Ian's Blog

Listing

2011-10-30T18:41:00.000-07:00

We made the trip to Atlanta to list Ian for liver transplant 6 years ago this week in October. We've come a long way since that Halloween in 2005 from my little monster so jaundiced with your liver disease

to my strong brave knight in 2011.

Thank you donor family for your selflessness!

Camp

2011-09-19T07:11:00.001-07:00

This weekend we went to Camp Twin Lakes for the annual Camp Second Chance Family Weekend. It is a camp for transplant kids and their families. The place is amazing and has everything from mini golf, paddle boats, a zip line, rock wall, etc. AND can fit the medicial needs of transplant kids.

This was Ian's second year going and the theme was Beach Party. Ian's favorite part of the weekend was fishing part probably because he caught a fish!!!

First Grade

2011-08-16T17:01:00.000-07:00

Ian was ready for first grade with his new spiky hair and backpack. He had a great first day and we think his teacher is wonderful. We expect great things this year!

Pirates

2011-07-03T17:41:00.001-07:00

These are some pictures of Ian's pirate themed birthday party this past Saturday. Argggh!

Six

2011-06-29T17:55:00.000-07:00

Can't believe my sweet little boy isn't so little anymore as he turned 6 on Monday!!! Happy Birthday Ian and I hope there are many many more to come.

A good deal on yellow

2011-05-19T18:00:00.000-07:00

Whose are mellow fellow all dressed in yellow?

Ian's class had yellow field day t-shirts. Here Ian is getting ready to do the batton race.
And his T-ball team, the Pirates, have yellow shirts too.

We are hoping that the summer reading program shirt will be blue or orange!

Great Clinic Visit

2011-04-18T18:37:00.000-07:00

Ian had a great clinic visit at CHOA this last week. We don't have to go back to clinic for one year and have labs only every four weeks instead of the every two weeks. We are thrilled and feel very blessed. Doctor Romero was even the clinic doctor this last time which made Ian's day.
We also went to the Transplant Night at the Braves on Thursday while we were "in town". Ian ate the chick-fil-A this time and I got him cotton candy even. We only made it to the third inning but it was enough for Ian to still be talking about the game constantly.
Great trip to Atlanta and one we won't be repeating (hopefully) for a year!

Next Week

2011-04-06T20:07:00.000-07:00

Next week we journey to Atlanta for a regular clinic visit as well as the "Night out with the Braves" game. We'll do labs there in Atlanta. We just had a prograf level change and so far no sleep interruption problems and I am hopeful that we will avoid those this time. I am also hopeful that we are very close to Ian switching over to a prograf pill instead of a suspension. I'll post pictures of our trip next week.

I'm great

2011-01-31T18:44:00.000-08:00

I can't really complain that I haven't had much to update Ian's blog about. He had a round of flu but we managed to avoid going to the hospital thankfully. He is doing well in school (had a great first report card) and is learning to ride his bike quite well. Today we did a box tops page for his school as they are having a contest right now. He does a great job counting out the box tops for each sheet and then we tape them together.

We continue to work on swallowing the tic tacs so he can transition to a pill form of prograf. He is close but not quite there yet.

New Bike

2011-01-04T18:06:00.000-08:00

Ian wanted a new bike, complete with a bell, for Christmas and that is what Santa brought! He had his first spin on it on Christmas day and since then we have been doing daily "rides" (aka up and down our sidewalk). He doesn't like going over manhole covers and has fallen off a couple of times but I am proud that he gets back up each time.

Second Liver Day

2010-12-17T06:22:00.000-08:00

It's Ian's liver day today and we'll celebrate with cake tomorrow when Grandma and Grandpa (one set) can come. Ian is doing well as a 5 year old in Kindergarten. He likes reading, using his imagination and eating lots of snacks. This is him bundled up for school in the morning.

We've hit some important milestones in two years:

Labs only once a month

One med twice daily

Clinic every six months

Thank you to all who have helped us get to this point and especially the donor family who made this all possible.

The countdown

2010-11-30T17:47:00.000-08:00

Ian is doing great. I purchased a new type of mederma for him that is purple in the tube and then rubs on clear which Ian thinks is pretty cool stuff. I think this may be the last tube we buy. He will always have the scar but I was hoping it would fade a lot more like his first surgery scar has.

At just under 5 1/2, Ian lost his first tooth on Thanksgiving day. He was visited by the tooth fairy and was most excited to find some money under his pillow the next morning. Suprisingly not too much drama with the tooth removal which was all Brett's department.

The countdown is on for Ian's second Liver Day (December 17th). We have so much to be grateful for these last two years and couldn't possibly name them all but please know that if you are reading this, you are a blessing to us.

Add to my list of things never to be without

2010-10-31T18:06:00.000-07:00

So I'd like to add this

to my list of things to never be without as a transplant parent. It is called unisolve and it takes off adhesive painlessly. We used countless of these pads in the hosptial when Ian had his transplant because of all the tape on him from IV's and other tubes. The staff gave us lots when we were discharged and I have slowly been working through our supply (treating them like gold) getting off the tape goo from labs. I just broke down and used the last one this past time for labs. Ian came home with a different type of tape (I call it paper tape) and it is awful stuff to get off. I managed to get it off without an adhesive pad using water and an ice cube but then for days (about 4) goo was left on his arm attracting all sorts of fuzz build up. Which is when I decided to use the last pad and hope that the lab place would let us bring in our own bandaids....which brings me to the some great news that.....

Ian is now on an every month schedule for labs! This is great. We haven't been this far stretched for labs since pre-transplant. We are greatly excited to meet this milestone. So even though I used my last unisolve pad, hopefully I won't be needing them as often any how.

Clinic Visit News

2010-10-06T18:12:00.000-07:00

Ian had a fabulous clinic visit complete with getting his flu shot. (This is an extra bonus for me as I won't have to take him and wait in the ped's office here for an hour occupying both kiddos!)

He is growing and doing well on all accounts. The staff I think are all smitten by him but who wouldn't be right? He managed to get a special Thomas the Train engine from one of the doctors there. We are touched she remembers Ian so well to know that he adores Thomas.

The big news is that we are cleared for 6 months before needing to head back for clinic visit. This is exciting stuff! He would have been cleared for a year but because the doctors just changed his prograf level and are still keeping an eye on his EBV (viral that is still showing up in low level of his labs) so the team feels safer at having him come back in 6 months. Again, I am thrilled.

And for a bit of history, the end of this month (October 2005) five years ago marks our first ever visit with the CHOA team to get Ian evaluated and listed for transplant.

Grounded

2010-10-05T04:56:00.000-07:00

Ian and Brett were going to fly today to his clinic appointment but if you can believe it there are NO RENTAL CARS available at the ATL airport for today or tomorrow. So they are now driving instead of flying and I am yet again stocking the DVD wallet with lots of movies for the drive. Thankfully I checked a new Thomas the Train out from the library and have a few other suprises for Ian on the journey. I am hopeful this clinic will be a good visit and our next one won't be four at least 4 months but am really wanting it to be 6 months. I'll post an update on his clinic visit after the return journey.

Great Catch at Camp

2010-09-13T17:12:00.000-07:00

This past weekend Ian had the opportunity to go to Camp Second Chance which is set up just for transplant kids and their families. It is through CHOA and located in Rutledge, GA at Twin Lakes. The theme this year was Under the Big Top with all sorts of circus/carnival type events. Just Ian and Brett went this year as our first experience but based on the rave reviews they gave it, I think our whole family will go next year.

Ian had great time doing arts and crafts, learning some drumming skills and participating in the carnival where the jump castle was a big hit. But the biggest highlight and thing that Ian wanted to do while at camp was FISH!!! He chose to fish over paddle boats, swimming, rock wall, etc. It was worth it as he caught a 2lb catchfish on his first cast.

We are so grateful to the many people who make experiences like Camp Second Chance possible and hope that we can pay it forward one day.

School Days

2010-09-07T10:11:00.001-07:00

Ian is doing well in school thus far. He is enjoying the computer center, science center and rice table. He is suprisingly only one of two kids (by his account) that have lunchboxes and don't purchase lunch. When I asked him if he wanted to purchase, he emphatically said no. He enjoys riding the bus, sweat box that it is and all. Here he is at his desk in school--he is put on the end to have less kids around him and touching his "spot". I LOVE that his teacher thought of that!

He has already missed one day for a cold and there has already been a case of strep in his classroom so we are being vigilant.

He'll have labs again this Monday which means he goes in late. His next clinic visit is in October and we are hopeful that we won't have to go back for six months. His liver numbers are holding solid even with the weaning off of the prednisone so that is good.

I'm a Kindergartener

2010-08-17T20:29:00.000-07:00

Ian started Kindergarten today and had a great day. His teacher, Mrs. Slusser, is aware of Ian's medical needs and seems like she will be proactive about things. She has dealt with some servere allergy kids previously and so has some background about wiping things down, precautions, etc.

Ian will be dropped off in the morning because of his prograf medication. His bus would come to get him at 6:42AM which is crazy! His prograf time is 8am so to keep it as close to that time as possible (without having it given at school which is not our first choice) we're driving him in and squirting the med in his mouth has he gets out of the car.

Ian just had labs yesterday but will be missing school for labs, clinic, illness (his own or classmates) etc. He can only miss 10 days of school even with an excuse so we are working with school administrators to make sure that Ian isn't penalized for his liver transplant.

He liked the different centers in the class room giving high kudos for the computer center, rice table and reading area (although he hasn't found a Thomas the Train book yet). I look forward to good things this school year and know that Ian will be a great Kindergarten Boy!

Clinic Visit

2010-07-29T17:25:00.001-07:00

Ian had a great clinic visit last week. He has been having a few of his liver enzyme numbers creep up a bit so some other tests have been ordered. We are currently waiting for those results and they should be back any day.

I met with the school principal about Ian's medical needs. It was a very good meeting and I feel better about sending him off. I really appreciate the time that the principal took to meet with me. We'll meet his school teacher in about two weeks. I am excited about his first day of school. Right now we are role playing different things that he may encounter for school and his favorite so far has been the lunch sack. He is thrilled with opening it and finding what is inside. It has been a great teaching moment about nutrition for us.

We ordered a new ID band a something special to start the school year. He has a red and blue truck band, space themed band and he choose this time a......

football band. I guess all those Virginia Tech football games that Brett and I watch are making an impact.

I'm 5 today

2010-06-27T17:33:00.001-07:00

Ian turned 5 today and was all smiles! He got a set of golf clubs (kid size) and he is practicing putting in our family room. Our little man is growing up so fast--where has the time gone?

Tubes

2010-06-16T18:49:00.000-07:00

Ian had tubes put in his ears about 2 weeks ago. He is doing great with them and has even gone swimming a couple of times. He couldn't eat breakfast that morning so we woke him up around 11pm to give him some food and he chose the very healthy option of a hotdog. The only part of the procedure that was a bit hairy was when he was waking up from the anasthetic. They told him to come in PJs and comfy shoes so we complied. Here he is waiting to go back.

The new lab place that CHOA recommended continues to be great. I just have to remember to bring lab orders each time as standing orders aren't possible right now. I have a huge stack of them on my desk. Last time I left without htem and got down to the end of hte street before having to turn around and come back for them. We go for labs again this next week and I'll avoid Friday as that seemed to be much busier than Monday.

New Labs and Last Day of School

2010-05-27T19:48:00.000-07:00

Ian has been busy this week. We went to our new lab location on Monday and it was wonderfully speedy. We were expecting lots of extra paperwork this time being new but nope, it was fairly simple. Ian was disappointed that he only got a cottonball and tape over his needle site instead of the usual bandaid. We celebrated by getting a donut afterwards.

He also had his year end preschool party on Tuesday which was inside due to the rain. This was Ian's first jump castle experience and he loved it. The blurry boy in front is him.

Today, Ian finished preschool and had his program. He did fabulously and I could hear him singing all the songs very nicely. He had several parts of the program. The paper he is holding is his certificate.

Next week is going to be busy too with tubes surgery.

Upstaged

2010-05-21T18:14:00.001-07:00

So I don't know if Ian' felt upstaged by Livia's need to go to the ENT for consult about getting tubes in her ears (we are waiting on the fall if we need to for her) or what but we went yesterday to the ENT to talk about Ian's ear infections, etc. He has had an ear infection in both ears since about March. We've been on antibiotics even stepping up in strength and getting shots (partially because of the prograf making him immunosuppressed). For someone Ian's age, it is kind of odd to be having this problem so the ENT thinks the transplant is factoring in to some level. As of yesterday, he still has lots of fluid in his ears. Thankfully at present it is not infected but will be at the slightest hint of bacteria. He is also having some minor hearing loss with lower tones. We were very glad to hear that he could still swim, bathe, etc. with the tubes in.

We scheduled the surgery (hardly seems like surgery given everything else that Ian has conquered) for June 2nd. We'll have to go through the no eating bit again prior to. My mom is looking to come and be here to watch Livia while I take Ian for the procedure (should be about 2 hours only). Brett has a work conference that week so we are grateful that Grandma M is willing to come.

So Ian, no more upstaging!

Sharp

2010-05-11T09:46:00.000-07:00

Ian has had a pretty fierce ear infection since about March. He has been off and on antibiotics since then and has increased in strength over that time. This last time we went in, it was antibiotic shots back to back days. We are also going to see an ENT. Part of the problem is that Ian is immunosuppressed so his body doesn't want to fight this infection.

The trauma with the shots is now number 3 on my list with:

1. PICC line dressing change
2. IV start
3. Antibiotic shots

The antibiotic is very thick and so it takes a long time to inject and it then burns after it is in. It was swell to have to hold Ian down for it both days. Here is the before

and the after
On other news with things that are sharp....we are switching where we get our routine labs drawn. MUSC has been slow to turn around results and are having some issues getting the EBV results/blood done how CHOA needs it. So CHOA found a new place that is

a) closer to our house so no City traffic to deal with
b) can test EBV directly
c) results can be retrieved by CHOA directly
d) no parking fees

It is a win win all around so we are switching. I just got word that Ian's prograf level is crazy so we'll be using this new lab sooner than we thought--next week.

Batter Up

2010-05-03T10:25:00.000-07:00

Outside time with the children includes games of chase, slides, hoola hoop, swings, and baseball which Ian is very good at helping Livy with. He is such a great big brother.

And when we come inside, Ian knows to scrub up to see who can make the biggest bubbles to clean our hands and get rid of those pesky germs.

Fishing

2010-04-28T10:05:00.000-07:00

Ian went to Kindergarten Open House night last night. We had great fun with the fish theme:

Making patterns out of goldfish crackers

Cutting playdough fish

Doing fish puzzles

Dry Erase boards

Songs about fish

Painting fish

And Ian's favorite....fishing for letter sounds!

Trend

2010-04-21T21:16:00.000-07:00

So anytime we visit or travel somewhere, Ian comes home sick. My theory is b/c he is around "non-family germs" and it just hits him (and naturally his sister too!) He spiked a fever at my parents home this past week and now has an awful cough. Our pediatrician had no open spots this afternoon so tomorrow, we have an appointment. I have used all my creative ways to occupy children in a doctors office of:

1. Bribe treats (food is no longer allowed at this office--GROWL!)
2. Bubbles
3. Balloons
4. Books
5. Magna doodles
6. Crayons on the exam table paper
7. Inflatible ball to kick in the room
8. Toys

Please, if you have other ideas, pass them my way!!!!

Ball Game

2010-04-10T18:31:00.000-07:00

Ian had the opportunity to go to "A Night at the Braves" this year with Brett (Livy and I stayed home as she doesn't do so great with the trip). This event is for transplant kids and their families to go and do something "normal" like see a baseball game thanks to the philanthropy of the The Braves. Ian had a great time eating a hotdog (yes he ate the whole footlong hotdog by himself!)

cotton candy

and walking around the stadium.

And because we like to try to be as efficient as possible, we piggybacked a clinic visit at CHOA on that day too. We found out that MUSC (our hospital here in SC) is not sending the EBV blood work to CHOA as they are supposed to and that means we'll be making a few phone calls/visits with the hospital administrators to figure out what needs to happen to make that happen. Brett and I played paper, rock, scissors on who got to deal with that one and I am thrilled to say that I am not it for once! :)

Registered

2010-04-03T05:38:00.000-07:00

Ian is registered for Kindergarten! The ladies at the office got huge eyes when looking over his paperwork and saw that he had a liver transplant which of course brought on all sorts of new questions. There is an open house later this month and we'll be meeting with some school administrators then to talk about Ian's medical history, etc. School is just a few months away starting on August 17th.....can't belive my baby will be going!

Sunshine

2010-03-27T10:22:00.000-07:00

Ian's prograf makes him pretty sensitive to the sun....in almost every picture we have of him outside he is squinting, covering his eyes, etc. We are looking at getting him a pair of nice sunglasses to help with this issue as the cheapie dollar store ones aren't cutting it.

We still had some fun outside and Ian is getting better at peddling his trike!

Kindergarten Registration

2010-03-23T18:48:00.000-07:00

Kindergarten Registration is fast approaching....next week in fact. I'm trying to gather all the necessary documents to take with us and just wrote a letter to our transplant team asking them to write a letter back with all the following stuff to help us get through the registration process.

1. Information as to why Ian has not had all of his vaccinations.
2. Information that Ian will be on daily medication.
3. A statement regarding necessity of school absences for Ian to have for labs, clinic visits, etc.
4. Any information the transplant team typically recommends school officals be aware of with a transplant patient.

We are now facing a new round of things like....
1. Does the school have a nurse?
2. What time does the school day start b/c this will in turn affect Ian's prograf time.
3. What do we do if Ian is out for long periods of time?

I am thrilled at the thought of Kindergarten and some what scared at all these new hurdles. Expect pictures of the actual registration process next week.

Lions, Ladybugs, and Penguins

2010-03-10T20:39:00.001-08:00

Each day I work with Ian doing occupational therapy things as well as school. Today we were drawing pictures of animals. I draw and show him how to do it while he follows my instructions. I am NOT an artist so drawing anything is challenging for me....

Here is our lion

our penguin

and our spotted beetle (Ian's is only 2 years old apparently)

Our frog didn't make it to the picture reel. I'm going to have to work figuring out how to do it. Later, when asking him about his snack at preschool Ian described this to me.

"We had frosted flakes and we ate it like dogs. No spoons or milk. We also had cookies. "

"What type of cookies?"

"They looked like the hair of the lion."

And I knew that I had reached a level of artistry that I could be proud of because I knew exactly the type of cookie.....they are butter cookies that have a hole in them. I confirmed this with Ian who then told me that he used them a sunglasses :) I wish I had a picture of that craftiness!

Tic Tacs

2010-03-05T17:45:00.000-08:00

We are working with Ian on being able to swallow a pill so he can take his prograf that way instead of via a compound. It will not only be cheaper but allow us to get the medication here in SC, and to keep some in our 72 hour kit, etc.

The transplant team encouraged us to try using Tic Tacs for Ian to practice with as his prograf pill will very close to that size. He is doing exceptionally and I think that maybe by the summer we will make the switch. He can swallow it usually on the first try but we are waiting until he can do that every time without any hesitation. Ian thinks it is great fun learning this--all because of the Tic Tacs. I got some that have both red and yellow in the package and he insists on swallowing one of each color at lunch and dinner. Bottom's up!

Gas Station

2010-02-22T18:17:00.000-08:00

Today was a lab day and I had to schlep both kids as Brett had a work meeting. We were in traffic for one hour because, bless them SC folks can't seem to really drive that well in rain. There were multiple accidents. Ian has to have labs before he has prograf as they are measuring the level in his body 12 hours after his last dose. We have an 8am/8pm prograf time. Today, we had a 13 hour trough time instead in the 12 hours thanks to the traffic. Argh!

Ian climbed up and into the chair by himself and was a champ. Not one tear.

The folks at MUSC were even ok with the new orders to send the EBV (a viral test) out to CHOA so that was awesome. I was prepared for much weeping and wailing and gnashing of teeth over that one.

As customary, we stopped to get a drink and special treat for Ian after labs because he did well. While at the gas station, Ian starts the potty dance so we go and use the facilities at the station. No sooner had a turned to lock the door do I look back and see Ian touching the toilet lid to raise it! AGGHHHH! We have talked endlessly about germs and public potty spots being very very gooey and gross with germs but alas! We used lots of germ-x because of course there was no soap in said gas station. Of course!

Weaning off Prednisone

2010-02-14T18:34:00.000-08:00

We got a call on Friday from CHOA that they are going to start weaning him off the prednisone. This is awesome. He is far enough out from his transplant and doing well enough that they are cutting him back to a M, W, F schedule. We are excited but also very cautious as this may trigger some rejection so he will keep his every other week lab schedule. Once he is off the prednisone, he will be on just one medicine, prograf, which he will be on for life. We are going to try to start teaching him to swallow a pill (about hte size of a tic tac) in yogurt or applesauce. We are hopeful it will be a quick learning curve so we don't have to continue to get the prograf compounded.

The call came the same day as our snow here in Charleston so in honor, I'll post pictures of Ian enjoying some playtime in the rare cold weather event here in the south. I am so glad that we were not admitted to CHOA last we so that Ian can be outside and enjoy this.

Back from CHOA

2010-02-12T06:59:00.000-08:00

Ian's EBV numbers are normal!!! That is the biggest news from our visit to CHOA where they run labs differently (and a bit more accurately) than here in SC. So we were not admitted to CHOA, no rejection, etc. etc. We feel exceptionally blessed on all accounts. Ian was great at CHOA. We met the new transplant coordinators and Ian quickly selected a new favorite as she gave him ice cream--chocolate nonetheless! It was a longer visit than normal because they were busy and all the doctors that needed to see him but he was so patient. We had a bit of some hoops to jump through to get his labs but even for labs he was good. At the end he wanted his name braclet off in the hospital and didn't even want to wait until we were in the car. Thanks to all who were praying for us! We appreciate it so much!

Energy

2010-02-05T19:13:00.000-08:00

We will head to Atlanta on Sunday and be ready for labs first thing on Monday so the results can be sent out in the 8:30 shipment. The labs take two days to turn around so we are going to stay put in Atlanta with my sister and wait until clinic on Wednesday for a chat with the transplant team and the results. That way if the results come back positive, we will already be there and not have to turn around and make the drive again in such a short time period.

All things point the lab tests, etc. being done at CHOA as a precaution. His EBV history hasn't been great so the transplant team is being detailed in their approach which we appreciate. We are optimistic.

Here are a few pictures of Ian's IV with his puppy (it is a sticker the nurses gave him) sleeping in his IV house. The puppy was named Fido. His IV pole was named George and we would talk to George when we would go out, etc. It was great. And Livy loved to try to climb on George! I did learn that for the next IV, we need to be sure to get it in his LEFT hand. I even told the nurse he was right handed but I think in all the hub bub to get it in that was lost. Ian had to have help eating, brushing teeth, going to the bathroom, etc. It was great to get that out for lots of reasons. And speaking of, his nurse let him to take out his IV for the most part. He thought that was pretty cool.

He is doing well clinically so he is excited to go to the Primary activity tomorrow. I think mostly because he can wear his pj's to it. Ian has had more energy today than all of hte last week and all I can say is "please share some of that with your tired mom!"

Home

2010-02-04T19:18:00.000-08:00

we are back home today discharged around noon. Ian fell asleep tonight so speedy in his own bed. We celebrated Brett's bday in style--at home sitting at a table to eat rather than hunched in a tiny hospital room eating take out food.

Ian is doing well. we will go to Atlanta (CHOA) for labs and a clinic visit with the transplant team this coming week.

I'll post pictures, etc. later. Thank you all for praying for us and the love and concern.

Another Day

2010-02-03T19:54:00.001-08:00

So we were hopefully going home today but no deal. Our doctor miscalcuated the time that we needed to stay.....so we (meaning Brett and Ian) are there again tonight. We should, dare I say it, be home tomorrow.

On that news, we will be headed to Atlanta this Sunday. Thankfully we won't be going there tomorrow (that was a very real possibility until about 8:30pm tonight). We will at least have the weekend at home to recoup and my Mom (thank you so much Mom) will be joining up with me to make the drive and stay in Atlanta.

A huge thanks to my friend who was so kind to watch Livia all day for me so that I could be with Ian and Brett could attend to some work related things.

We will be in Atlanta from Sunday to at least Wednesday and possibly longer based on test results. The CHOA transplant team wants to evaulate Ian and run some specialized tests that are best conducted there.

I have some pictures of Ian in the MUSC play area from today but am exhausted so I'll post them in a future update. He loved the painting, thomas the train table, and his new love.....the air hockey table!

Hospital Stay

2010-02-02T20:13:00.000-08:00

Ian has been spiking fevers for the last few days and last night he spiked a fever of 102.6 which anything over 102 our transplant team has told us to go to the ER. Brett and Ian headed to the local ER. The battery of tests began. The strep tests, and flu tests came back negative as did his chest x-ray so the doc there transferred him to MUSC the main hospital here in the area.

The doc at MUSC wants to keep him for at least 48 hour "rule out" period where they rule out certain things. CHOA team has been consulted and ordered an antibiotic that had to be given via an IV. The IV start wasn't pretty in terms of Ian's reaction (there was some major trauma with the three IV tries from the ER the night before). I was there solo with him for that....I guess that is "fair" as Brett was solo for the shots and IV tries the night before. Dealing with that level of trauma with your child is just torture of the worst type.

Ian is doing well clinically. His fever has since subsided as of early this AM and liver labs and ultrasound are good. He had labs drawn again tonight for viral screenings and we should have results tomorrow and are hoping they are of course negative.

We are all doing OK just tired from the lack of sleep and anxiousness of the ordeal. Thank you so very much to all who are thinking of us and praying for us.

Thomas PJs

2010-01-31T17:33:00.000-08:00

We're still battling a bit on the dreams. Things are better but not 100% yet. Ian will have labs again this Friday and I am hoping that he doesn't have another prograf change as that would add to the dream issue. He is in his special Thomas PJs to help.

He spiked a fever on Saturday night so we've been watching him closely. He didn't go to church today and actually napped which is rare for him. I am hopeful his EBV is not up.

Prograf Dreams

2010-01-19T11:03:00.000-08:00

Ian's prograf level changed (decreased this time) and with that has come the round of prograf dreams...bad dreams to be specific. I have spent a lot of time in his tiny bed trying to console him. It usually takes about 2 weeks for his body to adjust to the change so we should only have a few more days to go....hopefully. In the mean time, we are trying to deal with this side effect. I chase the bad dreams out each night and told them that they go to bad dreamland which brought on a whole round of questions I never anticipated. We are also going to make a dream catcher too. Any other ideas to help us with the dreams...send them on.

Museum

2010-01-10T12:05:00.000-08:00

We went to the Museum of Charleston recently and there was a gigantic polar bear there (Ian confirmed that it was not real many times). In honor of Ian's actigall from pre liver transplant here is a picture of Ian and Livy with the polar bear that is again, not real :)

EVB Levels

2010-01-04T09:44:00.000-08:00

So we are hoping that today's labs show a decline in the EVB levels... that is Epstein Barr Virus which causes mono and the like. Ian is routinely tested for it as this virus can be pretty nasty in someone who is immunosuppressed. His levels have been running high so the transplant team has taken him off his cellcept to help curb this and we are watching things pretty closely.

As for happier things, Ian will be in the next class for Primary, CTR 5 and he is pretty excited about that. He also restarts preschool tomorrow. He also go to open more presents last week for Christmas when Grandma and Grandpa came which was definitely a highlight of the Holiday season for him.

The Bridge

2009-12-22T07:18:00.001-08:00

We all went to Ian's lab appointment yesterday as one of our cars was in the shop. Ian was a champ sitting on Brett's lap. It was a new tech but she did great. We learned that his blood has to be collected in a specific order for the various tests. we are hopeful his EBV level is coming down.And after the labs, we went over the "big big bridge" (aka The Ravenel Bridge) to drop Brett at work. Ian loves this part of his lab experience and comments on this bridge all the time as the "bridge he goes over with Dad".

Happy First Liver Day

2009-12-18T05:25:00.000-08:00

Ian had his first liver day yesterday celebrating one year from his transplant. Here is Ian before hte transplant showing lots of jaudice:

and Ian a year after the transplant (all jaudice gone).....

We celebrated with pizza and cupcakes complete with a candle that he got to blow out. Way to go buddy on doing such a fantastic job this first year. We've come far in terms of attitude about medicine and the number of medcines (we are down to two in the morning and one at night now). I honestly am shocked we didn't have the trial of a rejection episode this first year. One could flare up at any time--20 years later after complete smooth sailing, but the fact he didn't have one this first year, wow!!!!

HAPPY LIVER DAY IAN!!!!!!!!

Dealing with Strep

2009-12-10T19:14:00.000-08:00

We went to the doctor today as Ian had a fever over the weekend and then developed a rash/blisters around his mouth earlier this week. It turns out he (and his sister and I now) all have strep. We thought the rash around his mouth was cold sores due to some exposure from one of his preschool mates. Alas, we were wrong. I tried to warn him as best as possible about the jumbo Q tip that would be rammed down his throat but didn't do that great of a job. His comment after that was " I didn't like it". Who does buddy?

One of the biggest bummers is that our ward Christmas party is tomorrow night and we won't be able to go now as we are still in the contagious phase. We'll be home all day tomorrow so it is good I have a holiday craft or two up my sleeve. Ian wasn't fully aware that the party was happening tomorrow which is good but I was looking forward to getting a picture of him with Santa, etc. I'm glad we got one with him at the Home Depot workshop last week although Ian would only stand next to him then and not sit on his lap.

Hopefully we'll be all good for his Liver Day next week and then Christmas!!!!

Champ Ian

2009-11-30T18:08:00.000-08:00

I took Ian to labs almost two weeks ago as Brett was out of town. Usually Brett takes him and I meet to do the pick up so Livy can still get her morning nap. So I don't normally know the routine but even still I knew that we had crossed a HUGE milestone when Ian climbed up in the chair and held out his arm and didn't want me to hold him or anything while he had labs done. He got an extra treat that day and a phone call to Daddy to tell him the news. I have pictures on my phone so I'll have to get them off to post one. I'm so proud of you Ian!!!

Doctor Visit

2009-11-15T07:35:00.000-08:00

Ian has another ear infection---growl! He is taking his antibiotics like a champ. Hopefully they will kick it on the first try this time. He has had a virus of some sort too so we have been doing some breathing treatments as well.

We were finally able to get the H1N1 vaccine for Ian. Our doctors office didn't have it for a long time. the transplant center had initally told us not to have any of us get it as they didn't feel comfortable with it yet and then about two weeks ago they called and said they had changed their position on it and to get it. Ian did really well with the shot--no tears even.

We are gearing up for Ian's first Liver Day in about a month :) We'll have a cake in celebration and I am trying to decide if I should make it in the shape of a liver????? Probably not; we'll just opt for green frosting in honor of liver awareness color.

Twinkie Time

2009-10-26T18:31:00.001-07:00

Ian had labs today and our customary meeting at the Kangaroo yielded a new twist on things.....a twinkie for great behavior during labs instead of the usual root beer and rice krispie. It was a first time for the twinkies and it was a hit. I never thought that I would be "one of those parents" bribing their kid with treats, but alas I have succumbed. Here's to the sugary goodness of a Twinkie making tears a non-issue in the all too frequent lab routine that is our life. Next time we will have to get some milk too!

All Fired Up...

2009-10-20T17:48:00.001-07:00

Ian is in preschool this year going three days a week. He loves it. Today the kids got to go on a "field trip". A fire engine came to the preschool and the kids got to climb all over it, etc. They got pretend firehats and everything. Ian was very excited as what little boy wouldn't be. He did tell me that he didn't get to pretend to drive it as "the wheel was very dirty". (I am guessing that his preschool teacher was looking out for him and not wanting him to touch it--Score one for the teacher!!!)

Ian is doing much better with speech therapy and for a reward when he is done he would like.....yep a pizza party and a thomas engine. He is facinated with the engine ID engines and is pulling for one of those or the express coaches.

We are back on an every two week lab schedule as his prograf dose had to change. They lowered it to help some of his viral levels come down. Hopefully that will help. He gets a root beer as a reward for labs and if he is exceptionally good a root beer and a rice krispie treat. And I thought I wouldn't bribe my children :) We really feel blessed at how well he handles things and how well he is doing post transplant.

He Did It!

2009-10-05T18:23:00.000-07:00

Ian has passed his Occupational Therapy. He hit all of his milestones about 2 months early as of last Thursday. I suspected we might be done early but not this early. Way to go Ian!!! We've worked really hard on cutting and drawing and writing and shapes, etc. We got pizza as a reward that night. I am so proud of him!!!!!

Cleared for Six Months

2009-09-28T17:40:00.000-07:00

Ian had a regular clinic visit this past week where we got some of the best news in a while...drumroll please.....he is doing so well that we are cleared for 6 months before we need to head back for our next clinic visit. This is huge. We were hoping to be cleared until December but now we won't have to go until March 2010. So exciting!

His therapy is coming along nicely and the OT thinks we may be discharged sooner than orginally anticipated which is wonderful. Ian has really come a long way. We work every day on something like cutting, drawing shapes, coloring, anything to build those hand mucles that atrophied b/c of his liver disease. He thinks it is great fun to do playdoh time and hasn't figured it out yet that it is actually OT time :)

Breathing Treatments

2009-09-11T17:28:00.000-07:00

Ian is getting breathing treatments every four hours round the clock to help get more air flowing. He is a doing a great job (probably b/c I let him watch an extra cartoon while he sits still to do it). He can even squeeze the med into the nebulizer himself and get it all strapped on. Go fighter pilot Ian. We should only need to do this for another day or two and then only as needed.

ER

2009-09-08T14:19:00.000-07:00

Last night was a long night as we were at the ER. Yesterday Ian had been unable to keep anything down and that is one of the "flagged" symptoms that hte transplant team has told us to call them about. We called the team and were advised to take Ian to the ER based on his symptoms.

Brett went with Ian while I stayed with Livy. They had a battery of tests including a chest x-ray, blood work, flu swab, etc. Everything for his liver numbers in the labs came back normal which was a huge relief. That at least meant that we were not likely battling a rejection episode. Chest xray negative for pneumonia and flu swab negative as well meaning that what he has has been ruled a respiratory infection. Treatment is to use the neubulizer round the clock to help open his air ways so he isn't struggling to breathe.

Today has been much better for Ian in terms of less coughing, less labored breathing, and energy. Hopefully after a good night of rest he will be even better tomorrow. The doctor has OKed him to go back to preschool when he feels up to it so we'll see when that is.

We are so relieved that it isn't his liver directly although he likely contracted this as his immune system is weakened from the transplant and it will take a while for him to be fully back to himself for the same reason. I think Brett and I ran through a million scenarios of what it could be, etc. I have already raised an eyebrow at the suspicious timing of starting preschool and coming down ill--could be very very random but still. It just means I need to step up my guard even more.

Thank you to all who prayed for us. It helped immensely specifically that Brett and I could funciton on so little sleep.

Side Effect

2009-08-27T18:05:00.000-07:00

Ian is doing great with the occupational (OT) and speech therapy (ST). He likes to go and "play" with the different things with Miss Molli and Miss Cora which is great that the thinks of it as play. I am working with him at home as a big part of the OT is at home and almost all of the ST is at home. We have been using scissors and gluing things and we learned today that we should try gluing some different things like beans or noodles so we'll do that tomorrow. For our ST we use his Big Backyard Magazine from national geographic to talk about all the cool animals and animal facts. I'm learning lots myself like why earthworms come out when it rains.

One of the side effects of Ian's meds is hair growth--speedy speedy hair growth. He has always had lots of hair and now it grows even faster if that is possible so yesterday I busted out our usual routine for cutting his hair. It consists of:

Taking off shirt to avoid the scratchy factor
Putting on cape
Putting in requested favorite DVD (yesterday it was James and the Red Balloon {a thomas the train})
Loading up with lots of sugary bribe treats (yesterday it was mike and ikes)
Wetting down the hair (crying follows)
Snipping begins

I try really hard to go fast and make it look decent and think I do an OK job but that is just me. Here's the picture of Ian in the cape yesterday :)

He is doing great all things considered and appreciate the love, prayers, and support.

Therapy Begins

2009-08-08T05:00:00.000-07:00

We had Ian's evaluations for speech and occupational therapy on Wednesday. He is a bit behind due to transplant issues. We'll have to go for about 3 months every week and it is going to take some schedule wrangling as Ian's little sister really shouldn't be there so Brett is trying to be here to watch her.

Ian continues to do well and amaze me with how much energy he has. And I don't think that he could eat more string cheese...we go through 2 to 3 a day!

Future Doctor

2009-07-20T10:26:00.000-07:00

With all of Ian's trips to doctors, etc. I think we may have a future doctor in the works. He gives a pretty good check up if I do so say myself. That one of his "toys" of choice; complete with waiting on the couch to be called back to the exam area. He's giving a checkup to "baby elizabeth" who had a "good strong heartbeat" and "no fever". Her weight was "thirty fourteen".

On a different note, Ian's transplant coordinator is leaving CHOA as she is getting married and we are sad to say goodbye to Miss Jill. She has been great to work with. We don't know who is taking her role yet. But thank you miss jill for all you have done for us! We will miss you. The picture below is of Ian with Miss Jill at CHOA during the transplant.

Actigall is going, going, gone....

2009-07-06T18:30:00.001-07:00

We said goodbye to the last dose of Actigall last night and of course had to do a photo op for that one. Ian has been on this med since he was 3 months old so it is kind of like an old friend to us.

Ian is doing so well all things considered. We are needing to get some occupational therapy for his motor skills and that should start soon. His energy is ever growing as is his appetite. He turned four a couple of weeks ago and are thrilled at how awesome he is doing.

Six Months Ago 6/17/09

2009-06-17T17:50:00.000-07:00

It is six months to the day and date that Ian received his gift of life liver transplant. Hard to believe in many ways that we are at our half way mark to our year anniversary. All day yesterday and today I have been thinking about what we were doing six months ago and how very different our timeline is now.

Ian is down to three meds in the morning and two at night. That is going to be our routine for a long long time now. We are hoping to get him on pill/tablets at some point but for now we are fine with the compounds. The pharmacy we are using is fantastic and we love them! We are still facing some of the side effects from the medications but are managing. So far, the meds haven't produced anything physically to tackle such as large gum growth or cushnoid cheeks.

Ian still has labs drawn every other week and today at labs, he didn't shed even one tear. He is really such a champ! When he gives me a pretend check up, he does labs and even gets the details of srubbing my arm clean before he "gives me just a little poke".

I continue to put special T ointment on his surgery site every night. He reminds me if I forget somehow. He is also very well indoctrinated about Germ-X at this point which I am grateful for.

He has so much more energy now and his appetite is amazing. He finishes dinner often before we can which is a total turn of events from pre-transplant life where dinner would take 2+ hours to finish for him trying to get enough meat/protein into his diet.

We are so grateful for the team at CHOA, for the donor family, for those who helped us fundraise, and our family, friends and our communities that have loved us, prayed for us and supported us.

Infection.....

2009-05-28T18:16:00.000-07:00

Ian had his first round of life being immunocompromised with an infection. I took him to the pediatrican here last week. The doctor treated him pretty agressively with three forms of antibiotic to cover the areas affected (eye, ear, nose and under arm). I was pretty worried because if the antibiotics Ian was given didn't work that would almost certainly land us in the hospital at CHOA with the need for IV antibiotics.

Ian is doing great a week out from his start of antibiotics. We are so blessed! He learned how to handle the eye drops great! He even reminded me it was time for them at the end of the treatment cycle.

I continue to use germ-x everywhere we go and stock wipes...but somehow something slipped by my watchful eye. So to you germs out there....be afraid as I am stepping up my watch!

Stud Muffin - 5 Months Post Transplant

2009-05-18T19:11:00.000-07:00

Ian is full of energy, sassiness and string cheese. He eats about 3 string cheeses a day and could do more if I let him. One of his favorite lines is "what can Ian have?"....repeated throughout the day even after we have just had a meal, snack, or treat.

His prograf has been increased again so we are again dealing with some nighttime dream issues. Since we a) knew to expect them and b) know how to handle them, this time it doesn't seem nearly as bad.

At 5 months out from transplant date, I continue to wipe down shopping carts when we go out--especially the ones that have a steering wheel that kids "drive". I won't describe the amount of grime that comes off when I do wipe them down but lets just say...even if your kids are not immunosuppresed, you want to be wiping down the carts, etc.

Ian is registered for preschool this fall. He already knows all that is on the academic agenda from the paperwork and information I got but the whole point is for him to grow socially at this stage. I am a bit nervous about the germ aspect and will be meeting with his teachers (there are two) in depth in the fall. I met them at registration and they seem like they will be awesome.

Ian is now in a booster chair and loving it. And no suprise as to the color he choose--orange. He wanted us to put in the booster when we bought it but because it was going to take some juggling for his sister, brett maneuvering the stuff, etc. his first ride in it was to church on Sunday.

The last visit to the transplant center (last week) was good. He met with the surgeon and got a glowing report (I stayed home with Ian's sister). Ian is in fact doing so well that we are cleared for a two month interval before needing to go back which is huge for our family. He still needs labs every other week which is very managable for us.

Ian is nicknamed stud muffin and to wrap up this post, here is a picture of our aptly name guy!

Update

2009-05-04T18:28:00.000-07:00

Ian is doing very well all things considered post transplant. We are still having some trouble with bad dreams since his prograf level was increased. I keep pushing fluids on him and as the weather gets warmer here in Charleston I carry water with us wherever we go. Ian sweats a lot on top of needing extra water as a transplant kid. His special t scar is starting to look better espeically at the edges. I put mederma on it daily to help. We are hopeful that after his next visit to CHOA (next week) that he will be able to get on an every other month schedule for clinic visits. It would be huge!

Four Months Later....

2009-04-18T18:27:00.000-07:00

Four months post transplant and Ian is doing well--very very well. Doctors are all pleased and so are we. We are down considerably in meds, clinic visits, and labs which are all good things. I am still very much into germ-x and recently stocked up with 6 bottles of the stuff as I continue to have one stationed in every room.

We went to the Transplant Night at the Braves and it was wonderful! So grateful for the Braves for doing something like htat for the transplant kids. There was dinner, a meet hte player, parade around the field and then the game. It was super cold so Ian and Brett (Livy and I had already left) made it through the 6th inning.

Ian is slowly starting to gain weight again which is good. I would be suprised for him not to the way he eats....blame it on the steroids. He is still struggling a bit with dreams b/c of the prograf but those have become more managable. His energy level is through the roof--running everywhere!

Our transplant coordinator wants Ian to possibly be a poster child for CHOA and is putting us in touch with the necessary folks. She thinks Ian is so cute (so do we!) and has a great smile(so do we!) and a wonderful personality (so do we!) So ham it up Ian cuz we want you on some CHOA PR materials!!!

Growing by Leaps and Bounds

2009-03-30T11:35:00.000-07:00

Ian continues to grow stronger and have more engery (lots more) each day. We are slowly taking him out more and more as we have hit our three month mark. We went to the library for the first time this past week and he was thrilled. We checked out new books--we have lots of books but alas even I was growing weary of the "usuals". I did wipe all of the books down with lysol first.

We are working each day on strengthening his fine muscles in his hands and arms. Each day he practices writing an upper and lower case letter. Today was letter R. We also go over the sound each letter makes and things that start with that letter and he is grasping it very well. He continues to improve with the control of the pencil each day.

Labs last week were pretty good. He selected "this arm" and held it still for the lab tech. I took a picture of the bandaid that he wanted off and then didn't want off.

He can squirt each of the meds into his mouth by himself now and does it without squeaking and fussing. Compared to where we were even a month or three months ago, this is huge!

He is into Easter and hunting eggs which I hide for him 5 times a day--that is my personal limit. He is a joy to watch find them! We are thrilled by his progress and that he is indeed growing by leaps and bounds!

4 meds

2009-03-19T18:37:00.000-07:00

The team is pleased with Ian's progress. We are at our three month anniversary. Clinic visit yesterday was good. Dr. Vos saw us first and was pleased with Ian's progress. A review of Ian's meds uncovered the fact that we were no longer supposed to be taking one of them. No harm to Ian except it happens to be the one that he hates so there was much weeping wailing and gnashing of teeth that could have been avoided. Somehow we missed that communication from the transplant team.

Ian is now on every other week labs and down to only four meds. It is likely that he will be down to three in the next two months and then slowly back off the remaining three over a long period of time. He has lot a bit of weight but nothing too concerning. Dr. Vos also commented on the muscles in his arms and hands that they had atrophied some but would come back/start to really develop. This is great as it will really help his handwriting and other motor skills and coordination. The visit with Dr. Pillan was good except he didn't give Ian the usual piece of gum and Ian piped up to remind him of that. And the visit with Dr. Mee with filled with Thomas banter. We were able to be on the road before the main rush hour. We stopped for an ice cream treat and....yes special chickens (aka chicken nuggets).

We head back in mid April as we are at monthly clinic visits at this point. The day before clinic is the Transplant Braves game where transplant kids get to go to a Braves game, etc. Ian and Brett are definitely going but Livy and I may need to make an early exit.

Ian is doing great and I am glad that we have only 4 meds to deal with now.

New Lab Schedule

2009-03-12T16:28:00.001-07:00

Labs this week were fairly good. A few tears but overall he is really a champ! We got a call today that his lab schedule has changed to every other week which is great news! His prograf level was also adjusted down. Very exciting progress.

Ian keeps running into things....like the chair or the wall. Part of it is the lack of attention paid to where he is going but part is he has a new center of balance with a smaller abdomen. He has yet another scrape on his face which called for ointment--"not special t ointment" aka mederma but just neosporin ointment.

He continues to have some pain going to the bathroom and requests me to take his temperature everytime afterward just to be sure. We bought a new thermometer that beeps when it is done to help expedite me knowing when it is done.

Fluids remain key for Ian and I am pushing them on him big time. I'll say things like "take a nice long drink of water before we play wii fit" or something. Speaking of Wii Fit, Ian is very much into it now, well the balance games part of it. The penguin or marble roll are his favorites and he does fairly well. I worry about his fluids with it getting warmer here in SC. I take a snack and water cup everywhere we go which isn't out that often but April is coming soon and I'm excited to be out more.

We travel to a clinic visit on Wednesday so there should be more to post after that point.

A Raisin to Boot!

2009-03-09T18:34:00.001-07:00

So we had a visit to the ER...nothing for his liver mind you but the classic childhood curiosity of sticking things in and up noses, and ears. All of hte sudden Ian has figured out his body has these neat little "hiding" places.

On Saturday night Ian shoved a raisin up his nose. We have asked him why and I don't know if we were expecting a full confession or for Ian to tell us this elaborate hypothesis about a scientific experiment he was conducting or what but we got "I don't know" which we should have guessed.

After all attempts to remove said raisin from his nose (blowing, blub syringe, etc.) we called his pediatrician who advised us to go to the ER as it was 7pm on a Saturday. After a snotty experience for Brett (I'll leave out the details) and some trauma for Ian, the raisin came out and we are the proud owners of a package of tissues that cost some unearthly amount for the ER visit. We can also tell anyone who needs to know how to get something out of ones nose out for a much smaller fee than the ER :) The docs sent us home with our souvenir of the experience complete in a sealed specimen jar.

Lab Draw

2009-03-04T18:51:00.000-08:00

Ian had to get labs done today (we're on the weekly schedule at this point). He did fairly well overall. A bit of squeaking and fussing but nothing like it was when we had to get his PICC line dressing changed. Later back at the house, he wanted his bandaid to stay on even though it was clearly falling off so he basically took it off himself. Ian is becoming addicted to root beer as he gets one each time after labs at the Kangaroo gas station.

Ian fell going up the stairs tonight so he has a bit of a scrape/bruise on his face. He also got the wind knocked out of him a bit. I think he was more scared than anything.

He still has the "snuffies" although we are done using cold meds at this point. He has mastered hte concept of blowing into a tissue (sorry if that is too much info). I "threatened" him with using a bulb syringe like I have to with Livia if he didn't do better with the tissue. He improved immediately.

I found one of his asprin pills by the couch this afternoon.....indeed it would be one of teh very same chewable pills Ian is supposed to take each morning. We had a talk about how if he drops it or it gets lost he needs to tell me so we can find it (Livia is going to start crawling before too long and he needs to take it).

Today in our "preschool time" I worked with Ian using scissors. He did pretty well and likes to just cut big lines right now although we did some shapes together. He is mastering right and left and can tell you all the planets in order. I have found that teaching Ian through music is huge. He is still struggling with writing in general and it may be related to some fine motor skill development from the lack of vitamin absorption from pre-transplant days. I'm going to follow up with the team next clinic visit.

We'll have labs next Wednesday and I'll plan for that to be my next post unless something else comes up.

Clinic Visit

2009-02-26T06:08:00.000-08:00

Ian and Brett had a successful trip to Atlanta for clinic complete with a stop at IHOP for french toast on the way back home.

Ian's PICC line is out now (there was much discussion with doctors about this and Brett called me several times to get my take). The isssue is if Ian becomes CMV postive (CMV is a virus that causes flu like symtoms. A large portion of the population becomes CMV positive just from general exposure.) Ian is not currently CMV positive but his donor was so there is an 80% chance that he could contract CMV and the timeframe for him to do so is usually within the first six months. If he becomes CMV positive it means needing meds via IV which is why the PICC line would be beneficial.....we wouldn't have to put another line in; they could just use that one. We talked with Ian (me via phone) about the situation and let Ian weigh in on what he wanted and he wanted the line out mainly I think because he HATES getting the dressing changed so much. So to make this explaination longer, if he contracts CMV we'll have to go to Atlanta to get a new PICC line and get meds via IV--the doctors do not want MUSC here in Charleston doing that (which was interesting to me).

Other news from the clinic visit is Ian now off two of his meds and is projected to come off 2 or 3 more the next time we go which is in mid March. Unforunately, the med he dislikes the most is still on the list to take for a while. The med I want him off as it makes him more agitated is still on the list as well so we both have to deal with med things for a while longer. Brett thankfully brought home a new stack of syringes and stoppers as we were running low. I am refilling three meds later today to make sure we don't run out.

The doctors were pleased with his progress and lab numbers. We'll go back to clinic a day after our three month mark. We'll have labs getting "stuck" on Wednesday or Thursday of next week so I'm planning for that to be my next post.

"Tooth Blue"

2009-02-22T13:48:00.000-08:00

Not really much to report medically for Ian. Because of the lack of transplant things, I'll post something "regular" about Ian today.

Brett recently purchased a blue tooth for his cell phone. He wanted to have it with all the projected travel to and from Atlanta that we'll be doing. Ian has become fascinated with this "thing" that is in daddy's ear which he calls a tooth blue.

So today, I give him some jelly beans as a good eater treat. He eats two of them and the third disappears. I hear him in his room talking....he is having a pretend phone call with Brett using...yes...you guessed it the jelly bean in his ear as his blue tooth. I don't think he even cared the jelly bean was red in his ear. I know, I know...the ENT here would die if he saw this. (And if you are wondering....I had to use mommy/magician trick #372b to switch out the icky jelly bean for a clean one prior to eating it). Here are pictures for some laughs. First one you can't see the jelly bean really well so I took a close up :)

Big Band Aid Changed

2009-02-19T18:10:00.000-08:00

Today was the day for the weekly labs and the last time (hopefully) for hte big jumbo band aid to be changed on Ian's arm. Brett was again the one to take him so I did't have to witness it but honestly I had enough of that in Atlanta to last me a while. There was a major wreck on I-26 here so they got to the lab appointment late and I got to the Kanagroo (our gas station meeting/transfer point) early as I ditched getting groceries for fear of getting caught in the gnarly traffic. We should have just enough supplies to keep flushing his line until Wednesday at which point the line will be pulled.

There was a lot of commotion two houses down from us today. A bobcat aka digger, was busy working all day in their backyard. We took a walk down to investigate and found out that our "neighbors" are building a pool. We hope to be invited when it is functional. We played with the ball outside but didn't do bubbles today because of the fierce wind gusts.

Ian squeaked a bit tonight about prograf which is unusual as he is normally a champ about that med. We did some Wii Fit together and he weighs in a just over 30 lbs and has a normal Body Mass Index. He does OK with the ski jump and with the soccer ball heading exercises although his true strength is in the Wii Sports bowling where he bowls over 100 regularly, beats me almost every time and has a high of 206 (way better than mine). He also enjoys the golf game and we are trying to teach him about hitting the ball soft vs. not so soft but not hard.

Dates

2009-02-17T18:36:00.000-08:00

So today is 2 months from the date (the 17th) from Ian's liver transplant and it is 9 weeks from the call for transplant. Amazing! I have copied all of the old posts into word to print and put in the scrapbook I am making for Ian and I marvel at where we were and where we are now in the two months.

Ian and I looked at the transplant pictures together today on the computer--no time to scrapbook them yet. He was pretty interested in them actually and I told them about various aspect of things.

We got our first real bill from the transplant today. I want to express my gratitude again to the New River Valley, to churches and organziations there, our ward and stake family, and our family and friends for helping us to fundraise for Ian's transplant. We are humbled by your love and service. I don't know how people pay for a transplant without help. Thank you for your help as it has helped reduce our stress for the financial load tremendously.

"Half Burn"

2009-02-14T18:23:00.000-08:00

So this morning started out OK until about 8:15 when I remembered that I hadn't given him his prograf yet. The usual time is 8 so I was a bit off but there is a "slush" hour timeframe allowed. Shortly after the prograf, Ian tells me that he has to go potty. OK.....just after we finish that he says he has to throw up. So I get him to the toilet and sure enough.....I am needless to say very proud of him that he recognized that he had to vomit and told me about it.

Just before the barfing incident, he was taking his aspirin which he thinks I am saying "half burn". I giggle every time he says it. He has all the other med names down...zovirax, predisone, fluconozol, but aspirin gives him a little trouble. Ian also tends to reverse the order of words like buckle seat instead of seat buckle or lion food for food lion. (He has become obsessed with food lion b/c it is one of our "landmarks" he knows when we are getting close to our house.)

We busted out one of his last PICC line mesh sleeves yesterday. It is a nice long one too. The shorter ones don't really cover the line and tubing and caps very well so it is constantly popping out and I have to tuck it back inside. I haven't tried to wash the sleeves because Brett thinks they will just fall apart. We only them for about 1.5 more weeks so it is a bit moot at this point. You can see the sleeve --it is white on his left hand in the pictures posted.

Ian got out of his bed in the wee hours of the morning for the first time ever. He usually just stays in his bed and calls for us. Never has he gotten off his bed for nap time or at night time without us telling him it is ok so it was really odd.

He played Wii with Brett last night. Guitar Hero is now operational and thanks to Brett's brainy idea of giving Ian a toy guitar to use along with the game, everyone is happy and jamming along. Ian was "rockin' out" (a quote from Ian). He was so cute and to prove it here is a picture so you don't have to take my word for it.

Friday the 13th---not here!

2009-02-13T19:03:00.001-08:00

Today we got a call from the transplant team informing us of two great pieces of news. The first is that Ian is now on a weekly lab schedule down from the twice a week current schedule. And second, our next clinic visit is Feb 25th in about a week and a half so we don't have to go next week. Enter boogie music and groovin' all of us :)

With the lab schedule down, we will likely have Ian's PICC line taken out when we are at clinic on the 25th. This means he will be "stuck" each time but at once a week, we feel he can handle it. He had his PICC line dressing (aka his big jumbo bandaid) changed yesterday at MUSC here. Brett was with him and said "It wasn't Ian's finest moment". I can only imagine......

With the clinic visit on the 25th, it is likely that we will drive again although Brett and I will have our weekly "pow wow" session on Sunday night and discuss that further to get details worked out.

We got a letter in the mail yesterday that two of Ian's medications needed to start on a mail-order program per our plan because they were maintenance medications. Suprisingly, our plan does not cover prograf as a maintenance medication even though he will be on that med for the rest of his life and from our understanding he will eventually get to the point where that is the only med he will be on. So a few phone calls later, I have the information to get them on mail order if needed and have stopped the auto newal at the pharmacy we were using in Georgia which does not charge us for compounding the drugs. The compounding charges here are pretty steep and our insurance doesn't cover them despite the fact that Ian is only 3 1/2 and cannot swallow a pill yet. Doesn't make sense to me but that is a battle I have tried to fight with the insurance company and haven't made much headway yet.

I keep trying to push water on Ian to make sure he stays hydrated. Transplant recipients need more water than the average person and his labs show the fluctuation in how much I did or didn't remember to tell him to drink, etc. We have cups in almost all the rooms he plays in (kind of like the germ-x). I find myself saying to him "take a nice long drink from your cup and then we will...play hi ho cherry-o; engines; wii or something like it. My favorite cup location is one that has a handle and is hooked onto his bedside rail so he can drink from it during the night.

With the great news from the transplant team, it is definitely not a Friday the 13th at our house.

8 weeks ago.....

2009-02-11T05:52:00.000-08:00

8 weeks ago today, we got the call that a liver was a match for Ian. Amazing that it has been 8 weeks as time has gone slowly for some parts and flown by for others. We have truly been so blessed with Ian's transplant experience.

Ian is doing well over all. He has had his first round of the sniffles and fared ok. I have a bottle of germ-x in every room at this point I think and he is now to the point where he just uses it without much prompting. We are installing a wall mounted germ-x dispenser unit in our garage by the main door this weekend. I keep sani-wipes in the car and germ-x in the car and on my key ring too. We've eaten out twice (in a resturant) and both times it was quite the production to wipe down Ian's table area, chair, etc. I'm sure the waitresses think I'm a nut case--and they would be right to some degree.

I had to flush Ian's PICC line twice today. He did a lot of running and jumping outside today and then tonight with the Wii--so it needed it. He likes to scrub his line at the end with the alcohol pad. I am anxious to get it out so he can get a good soaking in the tub (It can't get wet and right now I'm using saran wrap and holding it to avoid getting wet).Ian continues to have some pretty intense dreams at night. We are wondering if it is a side effect of his meds and plan to talk to the doctors about it at next clinic.

We don't have to go tomorrow and may be cleared for another week if Ian's labs continue to show good stability. He took meds tonight in less than a minute I think as the Wii was "calling" to him. The Wii is proving to be a great investment for him in terms of meds motivator, etc. He has to have his PICC line dressing changed on Thursday and because it will be at MUSC Brett will be there to comfort him through it.

In honor of the 8 week milestone, I'll end with a numbers recap of the transplant...

*1 special boy

*2 loving parents

*3 year transplant wait

*4 people in our immediate family

*5 hour drive to CHOA completed in 4 hours

*6 meds to take each night

*7 days on the transplant unit floor

*8 hours in transplant surgery

*9 key people in the transplant team (Heffron, Romero, Pillan, dePaulo, Vos, Rochelle, Ginger, Denia, and Pat)

*10 new Thomas engines accquired b/c of transplant (daisy, toad, troublesome truck, fireworks car, chicken car, egg car, octopus car, lobster car, disel 10, and bertie)

*11 times into CHOA for lab draws since discharge

*12 days in PICU*19 days total in hospital

*23 days in Ronald McDonald House

*37 parking passes used

*40 staples for incision

*63 trips from CHOA to Mason Guest House

*238 pictures taken during transplant experience

*3,637 miles driven during transplant experience

*1,000,000+ reasons to be grateful

Labs on Friday and Monday

2009-02-08T13:12:00.000-08:00

Ian was really good for labs at MUSC on Friday. MUSC is getting better at being speedy too which is good. We found out that they can change Ian's PICC line dressing too which is excellent as we are hopeful not to need to go back to clinic for a while and his dressing has to be changed weekly. I continue to flush his line daily and got a new stock of syringes from clinic last week to do so. About 8:30 on Friday on my way to get Ian (Brett is taking him in and then we meet at a gas station near Brett's work to do the transfer) I get a call from the transplant team about Ian not needing to go to labs that day...too late. They could be a bit speedier in their communications some times. Ian is back to a M/Th lab schedule.

We have found an even better motivator for Ian to quickly take his meds and that is our new Wii that we got for Christmas. Ian loves to play it and we usually do it after dinner so he is quick to take them. I only need to threaten about Wii time in the AM for him to perk up and be a champ. We only have the Wii sports and Wii Fit (the real reason we bought is for exercise). He likes to bowl, golf and do baseball. He bowled over 100 last night and is really starting to get the hang of it.

He had a bit of a cold last week (despite my efforts to keep it from him by wearing a mask and germ-xing like mad). His labs were OK even with the sniffles. I put tissues next to him at night to avoid going in all the time. He has been having bad dreams recently which has made for some really long nights for Brett and me (also feeding Livia).

We hear tomorrow after labs if Ian will need to go back to Atlanta on Wednesday. Cross your fingers.

Cranky Crane for Christmas

2009-02-01T11:43:00.001-08:00

Ian is home now as of late Wednesday. He was so excited to see his train table and even though it was close to midnight we indulged him and let him play with it for a few before heading to bed.

We celebrated Christmas today (Feb 1st) and Ian got Cranky Crane from Santa. This was what Ian had been asking for for months leading up to Christmas. He also got bulstrode, salty, rescue train, murdoch, james, fearless freddie, quarry flatbed cars, and a new carrying case. Santa must have known that Ian would need it given all the new engines he has received.

Ian had labs done on Thursday here at MUSC for the first time. He was a champ through the ordeal but it was an ordeal needless to say. He is ready for the PICC line to be done I think and that wouldn't bother us a bit. We'll ask the transplant team about it on Wednesday. We recently found out that Ian couldn't play soccer as it is considered a contact sport so we are wondering about t-ball or baseball....that is another question for the team.

I have been putting mederma on Ian's "special t". He is great to remind me about it if I forget. I am hopeful that the scar will fade a lot over time to be like his previous surgery scar. My mom gave him a swim shirt to use for the summer which serves two purposes--sun protection as we need to be extra cautious b/c of some of the meds he is on and two hiding the scar to avoid lots of questions about things. Livia has one too and I'm checking into one for Brett and for me as well so we can all match.

Ian continues to not like his diflucan. I've tried calling it fluconozol (the generic name) to fool him that it isn't the med but he is on to me. It worked for the zovirax calling it acylovir. The other meds he does well even the bactrim which at the beginning was the one he gagged on all the time.

We've started seeing insurance statements for Ian's surgery, hospital stay, medications, etc. I am so thankful that we fundraised and even more grateful to all those who made it possible to reach our goal. Bless each of you. We don't know how people pay for this without insurance and fundraising.

As labs are due tomorrow, I'm sure there will be an update early next week.

Day 41

2009-01-27T14:32:00.000-08:00

According to Ian, one of the first things that he wants to do when we get home is to play engines. This is interesting as he has all of his engines here except for two of them. He plays with them about 4 hours a day. He has such an imagination with them.

Ian has been taking meds like a champ recently again. I am keeping with the mini m&m reward and it seems to be serving us well so far. He does not care for the diflucan at all and it gives him the most trouble. From the start of the meds here at RMH, he has come far and for that I am grateful.

He had a bath last night and we got his hair washed. He didn't fight it too badly as he was able to play with his duckies.

He is still eating string cheese in mass quantities. String cheese, pretzels and chocolate chip cookies--those three things are his main stays right now. He hasn't had yogurt at all since his transplant like he used to which is odd considering he had it for every meal prior to.

We head to clinic tomorrow and Ian knows that his "big bandaid" is getting changed. He keeps asking me if it will hurt and I have tried to be honest about it. Hopefully it will go quickly and he will hold still and that we will have a nurse that he likes....miss jennifer, miss cynthia, or miss satrina are his favorites thus far. He is quite the champ at knowing what to do for triage....blood pressure, tempature, weight, height, pain scale, allergies, etc. We should have lots to report about tomorrow.....

meds day 34

2009-01-20T08:14:00.000-08:00

So meds were a bit of a challenge today. Ian can name each of the meds he has to take and even ID them by syringe. I've stopped doing stickers and moved to giving him a mini m&m after each one. This is working well as he likes to eat them to get the taste of the med out of his mouth. His"favorite" med is actigall and least is diflucan--he will be on this for another 2 months is all.

Baths continue to be a struggle--only since the transplant has this aversion to water. I had Brett bring some rubber ducks from home this weekend to help motivate Ian and it was a bust. I did manage to clip finger and toenails last night. I an didn't like holding still but did it. We used saran wrap for his PICCline again.

He'll get his PICC line dressing changed tomorrow which should be swell.

More Engines Day 32

2009-01-18T20:08:00.000-08:00

Grandpa Herbst and Grandma Jenn are here for the long weekend. Today when they came they had presents for Ian. Several new books--an alligator under my bed--should be a hit given the fact that about a block from our house in SC there is a pond with an alligator in it :) They also gave Ian 4 new Thomas the Train engines!!!!! What a lucky boy! He was so excited. He got Bertie the Bus, Farmer McColl's chicken and egg cars, the aquarium cars, and.....Disel 10. Ian knows that Disel 10 is naughty. You can see the joy in Ian's face in the picture. We also went to the Atlanta Temple and got a haircut documented by pictures. It was a busy day--especially since Ian played with his new engines a ton! Thank you Grandma and Grandpa!!!!

Brett got up with Ian this AM to do prograf and let me sleep a few extra minutes. We don't have to do labs tomorrow which is nice. Ian has asked about his PICC line dressing and we are prepping him for Wendesday and the dressing change that will take place. Should be loads of fun!

Tomorrow Brett will go home and I know Ian will be sad about that. Maybe I should have saved one of the engines for a special suprise tomorrow......hindsight now.

A month later Day 31

2009-01-17T15:01:00.000-08:00

Wow! I can't believe that we have made it a month out from transplant. The first month is a big milestone . The next milestone is 3 months, then a year. So in honor of the month, I thought I would do a brief summary recap.....

We got the call to come to Atlanta on December 16th. I drove with both kids to get here by 4pm leaving around 10am from Charleston. We made it! Ian didn't have his transplant until the 17th and hte surgery lasted about 9 hours. He received a full liver and was fully closed after the transplant with about 30 staples. Brett stayed with Ian the whole time he was in the hospital and I visited between Livia feedings. He was in PICU for 12 days, transplant floor for 7 days and at the Ronald McDonald House for 13 days thus far. He is currently on 9 medications which he takes the majority of them twice a day. He has a PICC line (like a semi-permanant IV site) that he has had for about 3 weeks for lab draws. He is currently on a T/Th lab schedule (but was MWF until this past Friday). We go to clinic (a big doctors visit at the hospital) every Wednesday afternoon. He has had his staples out for about a week now and all of the steri-strips are off now. He has said the best part of the hospital was coming to RMH.

We are so grateful for all those who have made Ian's transplant possible in any way--the doctors and medical staff, friends and family, etc. Ian loves the notes and gifts--thank you so much for the thoughtfulness and generosity in showering him with love. Thank you and may Heavenly Father bless each of you!

Aunt Bean's House Day 30

2009-01-17T14:44:00.000-08:00

Ian had labs done by Miss Cynthia today and he was a champ for her. It was our fastest time yet dispite Ian walking extra slow from the parking area to the butterfly floor. On the way back, we got a wagon to expedite things as a trip to Aunt Bean's was pending.

He took meds pretty good as he wanted to hustle to get to Aunt Beans. The first thing he did at Aunt Beans was take off his shoes and socks and walk around barefoot on some carpet. He liked their foosball table and the toys in general. Bathtub paints were a highlight.

He helped me to get his line flushed and nighttime meds were also taken fairly well as he knew that Daddy was coming and wanted to take them like a champ! Right now, we watch Wheel of Fortune "The Letter Show" and Jeopardy as part of our nightly routine after dinner thanks to Grandma Meldrum. His prograf time is 8pm so that helps to pass the time.

Ian went to bed late trying to stay up for Brett but went to sleep before his arrival (at 11pm). He knows that Daddy will be here for breakfast tomorrow which should be a great day......

Day 29 So Cold....

2009-01-15T18:18:00.000-08:00

Today was really cold so we didn't go anywhere today...not even to Brusters for a half price banana split.

Ian took his meds relatively well today both morning and night. He has more meds to take in the morning than the evening. It seems to be working for me to leave or Grandma to leave the room for him to suprise us with empty syringes. We'll do whatever it takes. The three month post transplant mark will mean less meds for Ian which will be much rejoicing on my part.

Today was also bath day and Ian fussed about that. Somehow he does not like baths now and I'm not sure why. I managed to get him scrubbed as best as possible and even got his hair washed. I used a plastic grocery bag to cover his PICC line this time as it cannot get wet. Last time I used saran wrap.

Ian continues to have a healthy appetite--the steroids are in part the reason behind this. He loves pretzels and string cheese right now eating about 3 string cheeses a day. I have to go to the store tomorrow to buy some more. He is eating about 5 smaller meals a day rather than 3 bigger ones. I continue to push fluid on him.

I did some preschool activities with him today. I need to refresh him on some of the letters. He gets C and G confused sometiemes as well as Y and K and N and M. I'd like to see him be able to ID all the lower case letters by the end of the year without the capital letter next to it. We worked on writing his name as well by "connecting dot one to dot two".

We head into labs tomorrow morning and are hopeful that we don't hear from the transplant team. It shouldn't be much trauma as it is just labs from his PICC line. We're also looking forward to Brett's arrival tomorrow night. On to day 30.....

Four Weeks Later Day 28

2009-01-14T19:59:00.000-08:00

Four weeks ago, Ian had his transplant. December 17th will be his liver day and we will celebrate it each year with a cake, doing something special, and giving back to transplants/CHOA in some way. We are so grateful!

Today we had labs in the morning. Ian did well getting "triaged" (which is being weighed, blood pressure, and other vitals taken). Then the nurses asked me when Ian's PICC line dressing had last been changed and I told them that it hadn't. Here is where the trouble ensued.....it needed to be changed weekly to avoid infection and his had been on for two weeks already. EEEK! For those following the blog, you will know that the tape removal process for Ian has not been pleasant. This was particularly bad because 1) I was solo and 2) I had not prepared Ian for this at all not knowing myself htat it would happen. What to do...what could I do but help hold my squirming, screaming, crying, hysterical son and try to calm him and talk to him and help him not focus on this big huge band-aid that was coming off his arm. The nurse was awesome and she did use a uni-solve pad but it was still trauma. He made it through it though. I dread next Wednesday already though.

Clinic was good and super short--always a plus. He was seen by Dr. Pillan, Dr. Romero, Dr. Mee, and Miss Jill (whom he thinks gave him his new liver). He hasn't and won't at this point--need IV fluid as he is taking enough in orally. I keep buying pedilyte and other liquids to keep pushing on his. Transplant kids need extra amounts of fluids and they are definitely being pushed on Ian. His labs are wonderful and his prograf level has not changed at all for almost a week. That is good as it needs to remain under control for us to get the green light to go home evenutally. I am hopeful that we will be able to go home at the end of january but am prepared for longer if needed.

His current lab schedule is on a M-W-F shedule for labs (about 8am each of those days--in his PJs). Based on this Friday's labs, we may or may not get switched to a T/Th schedule next week. After the two day a week schedule it is down to once a week....which then we would start thinking about removal of his PICC line. All the docs from clinic today think he is doing well and that his color is great.

When we get home we may or may not be set up with home health care in terms of future labs and flushing his line--I am flushing and doing the hep lock on it now twice a day. He is improving with his medicine taking with tonight being the BEST ever! He has lost almost all the steri-strips on his incisions now. I have been finding them at random places at our suite at the RMH. Brett will be coming this weekend and staying until Monday afternoon (it is MLK holiday for his work). Having mom has been a huge blessing and help--thank you Grandma (and Grandpa for sharing her!!!)

We plan to go to Brusters ice cream parlor tomorrow for a banana split as a little treat! Should be a nice day tomorrow after today's morning lab experience.

A trip to PDK Airport Day 26

2009-01-13T11:42:00.000-08:00

Ian did pretty well at taking meds today--mainly because a trip to the PDK airport to see planes and helicopters was on the line. We saw several small planes land and take off and even 2 helicopters. We couldn't get to the part where the helicopters were really coming and going but we managed to see two which was the highlight for Ian. "Just like Harold" was his quote. He played a little on the playground area. I had gloves on him for the cold and germ barrier purposes. We were planning to eat lunch there too but ended up sitting in the car while Ian ate pretzels as we watched the planes come and go. PDK is a special airport to us as it is where we would have landed four weeks ago today had our angel flight worked out--it was too foggy in Charleston when we got the call so I had to drive. I posted a picture of the outing on my blog.

We had a great outing overall. Something to break up the monotony of staying inside all the time. I am grateful that it is not summer in many ways as it would be hard not to be out and about more. We may try to go to Target tomorrow--complete with gloves again, inside the cart rules, and a breathing mask (it has mickey mouse and other characters on it so I am hopeful it will not be a struggle).

I flushed Ian's line this AM. I'm doing it twice a day and usually it is in the AM and PM unless it is a lab day and then I personally only flush it once. I had Ian help me open the syringes and hand me his the end of his line, etc. which he seems to like being part of the process.

Labs are tomorrow and Grandma and Livia will be coming with us for clinic. I anticipate having some good updates tomorrow--hopefully :)

Labs Day 25

2009-01-12T16:53:00.000-08:00

Ian and I made the trip in for labs today. I made instant oatmeal for him to eat in teh waiting area. It was a long wait this AM so I'm glad we had some food to pass the time. I had to wake him up to leave this AM and just let him wear his PJ's instead of fighting on getting dressed. The nurse that took his blood has done it the past couple of times and was really good letting Ian open up the syringes to flush his line, etc. Ian loved that part and I will use it tonight when I need to flush his line again. We are needing to flush it twice a day and I have been trained to do it. I also got new supplies for it today at the hospital as we were running low but I anticipate being "put" on home health for delivery of such supplies for his PICC line. I'm also looking into becoming a CNA to hopefully be able to draw his labs directly instead of trekking to the lab--we'll see if that can actually happen though.

I tried this AM to hide Ian's meds in yogurt and that was NOT a success at all. The yogurt wasn't hte usual creamy goodness of Yoplait but a Lite Kroger brand which I think heavily played into the failure. I ate some too and must admit it was not great stuff. I tasted Ian's and he was right--it was yucky. He said that it burned. So my idea of yogurt wasn't that great. Ian ended up taking a re-dosed round and earned more thomas stickers. The prograf isn't a problem which is nice as that is the one he'll have to take forever.

Some of Ian's steri-strips or special bandaids have come off and I've saved one--why I'm not sure but I did. More will come off tomorrow at bath I'm sure.

We didn't get a call from "Miss Jill" to come back to the hospital for IV fluid or to adjust his prograf level which is huge. Yeah Ian. The pedilyte must be working a bit.

On to day 26.....

Stickers Day 25

2009-01-11T05:59:00.000-08:00

Ian is in love with fruity cheerios. We had several self serve containers saved up from the hospital and they are almost gone. Ian thinks they are fruit loops---which I am fine with letting him belive that.

Ian played with Grandma yesterday kicking and throwing a ball. Excellent physical therapy for him.

The sticker chart for meds is so far a moderate success. We'll see if it can offically be called a success in a few days. I may move to mixing meds in yogurt if there isn't big improvement.

Ian had noodles last night at the community dinner here at RMH. He tried to twist them up on his fork and get them in his mouth which was most hilarious. He didn't really eat a lot so he had a string cheese when we came back upstairs. We tried a bath last nigth with his PICC sleeve but the sleeve as too big so I ended up tying a target bag around his arm with the PICC line and holding it the whole time. I got his hair washed last night and nails trimmed too which were huge feats.

His prograf level has changed again so we'll see what his new lab levels are tomorrow. I bought pedilyte yesterday to try to rehyrate Ian so that hopefully we won't have to go in to the hospital for IV fluid.

Moon Sand Day 24

2009-01-10T09:35:00.001-08:00

Today Ian and Grandma Meldrum played with some Moon Sand here at Ronald's House. It is our first exposure to moon sand and I must say it is pretty neat stuff. Ian said it was like crumbs and I must agree with him.

Ian had to go back to the hosptial on Day 23, Friday for IV fluids. Brett took him while I stayed at the RMH with Livia. The rooms are small for all of us so we did the divide and conquer motif again. Ian's lab values overall are back to where they need to be except for showing some dehydration--hence the need for IV fluid.

Brett is back in Charleston and so I'll be the person to take Ian to labs next week. I am setting my alarm each day as his prograf time cannot be missed--I didn't sleep well last night thinking that I had overslept and missed it. He takes his prograf really well which is nice. He can swallow a tic tac and that is the size of a prograf pill. We are going to continue to work on it to be sure but we are thrilled at his wonderful progress on that side of things.

His PICC line sleeve arrived yesterday and we'll be using it tonight to give him a real bath--hopefully. He needs it badly. The shower head is a movable one here so we've been able to at least "hose him off" while he stands in the tub.

On to day

Day 22 Still Ill

2009-01-08T11:01:00.000-08:00

So Ian isn't himself 100% yet but he is definitely doing better. He was almost readmitted to the hospital yesterday due to low fluids and his liver numbers being off. He had to have labs again today and so far no call to come in for fluids or to be admitted and it is 2pm.

Germs are our enemy now--not like they weren't before but even more so now. In telling Ian about not touching things that are germy, etc I described that germs make us sick and sick can me coughing, a runny nose, spots, a rash, etc. Ian stopped me right there and piped up saying htat "Mr. Puppy has spots". Oh dear! What had I gotten myself into? I had to explain that Mr. Puppy's spots were not because he was sick or germy, etc. Very clever and it made me chuckle at how clever Ian was. We're at half a bottle of germ-x since monday--we use it lots!

The staple removal was trauma as I expected. Having staples removed from my c-section just 2 months ago I knew it wans't entirely pleasant. Ian got a relaxation med to help. He now has steri-stripes or special band-aides on his "letter T".

He continues to fight the meds unless we threaten a call to Santa. We're brainstorming how we can combat that one and ideas or suggestions would be helpful!

Ill Day 20 and 21

2009-01-07T07:57:00.000-08:00

Ian had a rough night last night in terms of vomitting and potty mishaps. He isn't well....saying his tummy hurts and he is cold. We go to clinic today to hopefully get some resolution.

Today is staple removal day....we'll see how that goes. More after our clinic visit at 1pm

Day 19 at the Ronald McDonald House

2009-01-06T06:15:00.000-08:00

We got the news that we were able to be discharged at Doctors rounds this morning (around 10:20am). Ian wasn't even in the room as he was out for a walk with Grandma to see the fish in the aquarium. Ian had physical therapy that morning--a treasure hunt walk to get all the pieces to a pirate Mr. Potato Head. Very clever. It helped him walk, bend, squat, etc. all things to help him strengthen his muscles again.

We made it the Ronald McDonald House or Ronald McDonald's House to Ian (as in the place where Ronald lives). It is brand new as of June 2008 and is wonderful.

Ian was a GREAT eater last night. We had chicken casserole and he ate a decent portion and then was still hungry. He ate chocolate pudding, a granola bar, and cheez-it crackers. Yeah, the steroids are kicking in for him.

It was our first day doing meds solo....and he took them like a champ overall as usual. There is no rail on Ian's bed in the RM house but it is a queen size bed. We placed him in the center hoping that he won't fall out after making a barrier of ever sturdy pillows :)

Ian will return to clinic here in Atlanta on Wednesday for labs and to get those staples out! Very exciting day!

I'm a sunbeam Day 18

2009-01-04T11:08:00.001-08:00

Today is Ian's first day of sunbeams--he of course couldn't go and won't for a while but nonetheless is a sunbeam. I created (with Grandma's help) a sunbeam "sticker" for him and took a picture. Our church time changed to 1pm today as well.

Ian did well with his IV bolus last night so he doesn't need another round today. His prograf level is back towards the normal level so it is looking more likely that tomorrow could be our day to leave the "butterfly hospital". (They have taken down all the Christmas decorations now).

Ian fought his meds a bit last night but overall is a champ at taking them. We are helping him to drink lots of water so we can avoid the NG tube needing to come back into the picture.

The steroids are definitely increasing Ian's appetite--he ate a string cheese, half a yogurt container, chocolate milk, 3 apple slices, two handfuls of trail mix, half a bag of cheetos, and half a rice crispie treat today for lunch. The doctors told us it would make him "eat like a horse". We are going to need to watch his weight gain as that could become a problem.

We are going to attempt to take off more tape goo today as well as get his hair washed in the tub--Brett will hold him while I spray him with a movable shower head. He cannot get wet still (cannot do so until the staples come out) and his PICC line sleeve cover isn't here yet so we want to be a bit more cautious of water.

I was silly and didn't pack any short sleeve shirts for Ian other than PJ shirts so I'll be going to none other htan Target to get one or two. The short sleeves will help getting labs drawn from the line easier than hiking up a long sleeve over the line. The line is covered iwth a stretchy gauze "sleeve" to help it from dangling everywhere and getting caught on things.

Right now, Ian's getting his vitals taken and it isn't his favorite thing. He squeaks a bit and I think it is for show more than anything else.

We'll try to work on helping him to make good sunbeam choices :)

Medicine Change DAy 17

2009-01-03T12:51:00.000-08:00

So today we aren't going to be discharged again. It looks like Monday at the earliest. The doctors are trying to get his prograf level to what it needs to be. They've cut it in half at this point.

Ian has a new mesh sleeve on his PICC line and it is longer than the last. It seems to be working better. I'm sure he could wear long sleeves but short sleeves are much less of a hassle with the tubes, etc.

Ian got some IV fluid today to boost his "moisture" content. He needs to drink more.....transplant patients in general need to have more water intake. We are trying to limit the amount of sugar, etc. so I bought a new cup for Ian at Target today--is a flip straw type to avoid spills, etc. We'll be pushing water on him as much as possible. He'll get another round of IV fluid later today. His prograf level is still not back from the lab--I'll ask about it after this post.

Ian has enjoyed holding his sister and likes to determine if she needs a diaper change. I took some cute pictures of the two of them earlier today but am having trouble getting them downloaded from the camera on to this laptop.

Aunt Bean is visiting today and Ian is thrilled. He hasn't seen her in about two weeks at this point. Her girls aren't going to be able to see Ian just because I am being hyper vigilant about germs, etc.

I am going to try to get more of the tape goo off of Ian today--yesterday wasn't fully successful in that endeavor. Ian likes to feel his bumpy staples and we have to tell him not to pick at them--it is ok to touch just not pick them. He should get those out on Wednesday--we hope.

Still here day 16

2009-01-03T07:31:00.000-08:00

Ian's prograf level hasn't normalized yet so we can't be discharged. His dose was cut in half today hoping it will make a difference. Honestly, I expect to be here over the weekend.

My mom and I were able to get some of the major tape goo off of Ian today but not without a fight from him. It is fierce stuff and he hates it. We need to do it somehow sneaky so if anyone has ideas about this, please pass them on.

We got our discharge meds today--a huge sack of them. He has 9 to take right now. I'm ok with the meds it's keeping Ian germ free that makes me a bit worried. He is a boy afterall who is only three. Brett thinks we should buy stock in purell and I agree with him. A dear friend made a sign for us in our old home that says "Please take off your shoes and stay awhile" I think I need a new one that says "please take off your shoes, use some germ-x and stay awhile". We plan to have germ-x available at all entry points to the house. I personally don't think it is a bad idea to hang holders for it on the walls but that is just me.

Ian has had cheese pizza for about the last 5 meals or so (less breakfast). He amazes me at how frequently he can eat the same thing. I would be sick of it. He had some sticky popcorn last night as well which was a real treat for Ian. Sticky popcorn is a grandpa meldrum speciality.

We are hopeful that tomorrow will be our discharge day....

Day 15 New Years Day

2009-01-02T11:24:00.000-08:00

Ian got his neck IV line out today. The biggest trauma was the tape removal--suprise suprise. It had to be done by a doctor as there were two stitches to remove with it. He did well with it all things considered. Dr. Vos did the removal and in some ways it was good it was not Dr. Romero so he still holds Dr. Romero as his favorite.

Doctors are thinking that Ian can be discharged tomorrow, Friday. We are very excited but know that any little thing can change that--fevers, meds, vomiting, etc. Ian got a bag of meds to prep us for our discharge. Our transplant coordinator told us we would have a training session on them tomorrow before discharge.

Ian got to play in the playroom here on the floor today. It is nice as it is only for the transplant kids so I feel safe in the level of germs, etc. He loved the magnetic sand table. I make him wear slippers to the room which he still fights me on a bit--I don't want him walking around a hospital without anything on his feet.

Ian is still eating well and is sleeping fairly well. He is doing better with some of the potty issues we were having as well. We all watched some football bowl games in his room and he seemed to like that.

So far, it is a great new year!

New Years Eve Day 14

2008-12-31T09:14:00.000-08:00

I'm not sure what type of celebration they do here for the kids on New Years Eve--perhaps some sparkling apple cider with dinner?? I don't think Ian even knows what New Years Eve means really.

He got a bath this morning which amongst the squirming and howling he did manage to get clean a little. He still has lots of tape "goo" on him and we'll need to do some serious scrubbing with removal pads and water to get it all off. Not too worried about the tape goo yet.

We are hopeful his neck IV and last arm IV can come out today and his PIC line put in. A special team needs to do that and they may already be off for the holidays. We'll see. He'll be sedated for that as it tends to be a bit painful.

Grandma and Grandpa are still here helping and they have been a great help! They have just returned from a walk so I'm going to wrap this up. More in the new year!

Lost Dinner on Day 13

2008-12-31T06:32:00.000-08:00

So it has been two weeks since we got the call for transplant. How exciting and the progress made in two weeks. Ian is my hero and is a strong fighter.

Ian had his surgical drain removed yesterday which was great. He slept through it due to a sedative they had given him.

He had an accident in the night which necessitated Mr. Puppy being washed. He is as I type this still drying--I didn't dare put him in the dryer. We are hoping for some improvement with the recent bathroom issues.

Ian should have his neck IV removed tomorrow (Wednesday) and his PIC line put in. We'll see.

He was given a new med today--bactrim which he has has multiple times before. He barfed it, all his other meds and dinner. It was swell! I wasn't overly impressed with the nursing staff and how they handled it. He had to retake his prograf immediately as that is his antirejection med that is key. He did that like a champ. I am to pick up some root beer to try to hide the med in for tomorrow.

Grandma and Grandpa went marching with IAn in his wing of the hospital. He did great. They also played Hi Ho cherry-o about 12 times I think :) I can't wait for what tomorrow brings!

On the Transplant floor Day 12

2008-12-29T17:45:00.000-08:00

So today Ian's rounds with the doctors were great news that he was able to move up to the transplant floor. We were told this news around 9am and waited until about 3:30pm for it to actually happen but it did happen and we are thrilled!

Ian ate a late lunch because we waited to order in case he was moved (per direction of his nurse). We loaded up a wagon and his bed and made the journey to a new tower of the hospital just for transplant patients. In celebration we got cheese pizza. Ian wanted checkerboard pizza but the closest Little Ceasers was over 30 minutes away so we went to Papa Johns. Grandma and Grandpa Meldrum and Livia were able to join in our feast in his new room which is smaller than PICU but has advantages of being able to eat, not be connected to so many monitors and visitors are not limited. It is quite noisy on the trx floor I must say.

Ian took a stroll down the hall with Grandma and Grandpa and was able to find where the tricylces are kept. He saw a little girl his age who just had liver trx two weeks ago (dubbed his "twin" b/c they are so close in age and she also has blonde hair and blue eyes and is from the HHI, SC area). I think they will be playmates.

Ian didn't want the tape off his leads but we convinced him to take them off with some jellybeans--a bribe treat.

Ian got to hold Livia which he loved and I got a few pictures of that "reunion".

Overall today was a great day!

A fever - Day 11

2008-12-28T14:31:00.000-08:00

Ian had a fever last night so we knew that our chances of leaving PICU today were slim. He is doing well overall and fevers, etc. are normal just after transplant. Nonetheless, new blood cultures, samples, etc. were taken and another antibiotic was added. The main medicine, PGE, that he is getting will stop tomorrow morning and if his daily am ultrasound is good then we can in all likelihood move to the transplant floor (aka home to the butterflies). The PGE medication must be given in PICU and that is why we are still in PICU.

We found out that Ian's new liver was a perfect match for size, blood type, vessels, etc. which we are so greatful for. The nurses have commented how lucky we are that Ian's abdomen is fully closed and we now know how lucky we are.

Ian got his arm IV cleaned and new dressing yesterday which he was truly a champ for. Yes, tears of course but given all teh tape trauma he has been through I can understand. We are expecting to find tape residue on him for weeks after we are discharged. Every day there seems to be a new spot. Our nurse yesterday told us to be sure to take some Uni-solve pads home with us so we snagged a few already.

Ian was a great dinner eater yesterday--sliced turkey. He didn't care for teh rice which is odd as he loves rice. He had a few bites of corn and then wanted his chocolate donut. Chocolate milk continues to be high on the favorites list as well.

It will be a great day tomorrow if he can move out of PICU!