Clinic Visit

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"

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

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

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"

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!

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.....

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

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

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.