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!
Wednesday, December 31, 2008
Lost Dinner on Day 13
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!
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!
Monday, December 29, 2008
On the Transplant floor Day 12
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!
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!
Sunday, December 28, 2008
A fever - Day 11
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!
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!
Saturday, December 27, 2008
Month Day "27" - Day 10
Today is Ian's month day-27. His birthday is June 27 so every 27th of each month since his birth I take a picture on the 27th and scrapbook it to be sure we have a chronology of his growth, accomplishments, etc. (My oldest sister gave me the idea.)
So today's month picture will be pretty special. Usually in December the 27th picture is related to Christmas and this one will be too kind of. Trying to decide when to take it.
We may be moving out of PICU tomorrow and not Monday--it will all depend on Ian's daily ultrasound so we won't know until the day of.
Ian continues to have a very sore bottom from some side effects of an antibiotic that was recently added to his medicine list. He is using hte bathroom so frequently his little bottom is raw. We got some special cream for it this AM and I brought in some soft TP last night. He is even starting to go in his hospital diaper on purpose thinking that it will avoid the wiping of his bum. He doesn't understand that is making it worse...... He is on this antibiotic for five days and that means two more days.
We are watching bob the builder this morning and I am snuggling him on his bed. He got the dressing on his neck line changed last night which is good. The dressing on his arm IV needs changed as well but he is not wanting that now (after the tape trauma) and so we are appeasing him by waiting until tonight to do that.
Ian is taking all his meds much better now. Thank goodness for chocolate milk! He drinks about 4 cartons a day. The nurses are keeping some labled just for him in the fridge on the floor now. Instead of the usual pancakes for breakfast he had fruity cheerios (fruit loops to ian but a bit healthier). I think it was a great change of pace.
Today should be a great day in terms of getting up and out and playing some fun games!
So today's month picture will be pretty special. Usually in December the 27th picture is related to Christmas and this one will be too kind of. Trying to decide when to take it.
We may be moving out of PICU tomorrow and not Monday--it will all depend on Ian's daily ultrasound so we won't know until the day of.
Ian continues to have a very sore bottom from some side effects of an antibiotic that was recently added to his medicine list. He is using hte bathroom so frequently his little bottom is raw. We got some special cream for it this AM and I brought in some soft TP last night. He is even starting to go in his hospital diaper on purpose thinking that it will avoid the wiping of his bum. He doesn't understand that is making it worse...... He is on this antibiotic for five days and that means two more days.
We are watching bob the builder this morning and I am snuggling him on his bed. He got the dressing on his neck line changed last night which is good. The dressing on his arm IV needs changed as well but he is not wanting that now (after the tape trauma) and so we are appeasing him by waiting until tonight to do that.
Ian is taking all his meds much better now. Thank goodness for chocolate milk! He drinks about 4 cartons a day. The nurses are keeping some labled just for him in the fridge on the floor now. Instead of the usual pancakes for breakfast he had fruity cheerios (fruit loops to ian but a bit healthier). I think it was a great change of pace.
Today should be a great day in terms of getting up and out and playing some fun games!
Friday, December 26, 2008
Christmas Aftermath Day 9
Dr. Heffron, the surgeon, wants to keep Ian in PICU until Monday it looks like. He just wants to be sure that everything is going well before moving him--erring on the side of caution. We are OK with that. Hopefully by Monday Ian will just be down to one IV/central line for labs and things.
His main neck line got "clogged" I'm sure there is a medical term for this so it had to be changed but will be a whole new line, etc. in about two hours after an IV is done. He hates the nurse even looking at the line in his neck--I can't say I blame him.
Ian is enjoying playing Dont spill the beans, Go Fish and Snap games today. I've played multiple times and even Brett joined in a for a game of Go Fish. I was disappointed the Go fish cards didn't have fish on them (a classic set from my childhood did and I expected all sets to be like that of my youth). Ian already knows to check my cards to see what I have to ask for those :) What a clever fellow.
We are trying to get him out for a walk but he isn't interested b/c we want him to wear something other than just his hospital diaper--sweat pants, the hospital gown, a bathrobe or something but nope. The nurse got us a wagon to pull him around on our floor so maybe that will help.
Ian took a nap today--didn't even want his cheetos which told me how tired he was. The Physical Therapist told us he would tire more easily and we are seeing that now. He liked playing with his engines this morning on the floor.
I'm heading back tonight with some soft TP for Ian.....apparently the hospital doesn't focus on the cushiness of their TP. So with that last thought I'll post more tomorrow....
His main neck line got "clogged" I'm sure there is a medical term for this so it had to be changed but will be a whole new line, etc. in about two hours after an IV is done. He hates the nurse even looking at the line in his neck--I can't say I blame him.
Ian is enjoying playing Dont spill the beans, Go Fish and Snap games today. I've played multiple times and even Brett joined in a for a game of Go Fish. I was disappointed the Go fish cards didn't have fish on them (a classic set from my childhood did and I expected all sets to be like that of my youth). Ian already knows to check my cards to see what I have to ask for those :) What a clever fellow.
We are trying to get him out for a walk but he isn't interested b/c we want him to wear something other than just his hospital diaper--sweat pants, the hospital gown, a bathrobe or something but nope. The nurse got us a wagon to pull him around on our floor so maybe that will help.
Ian took a nap today--didn't even want his cheetos which told me how tired he was. The Physical Therapist told us he would tire more easily and we are seeing that now. He liked playing with his engines this morning on the floor.
I'm heading back tonight with some soft TP for Ian.....apparently the hospital doesn't focus on the cushiness of their TP. So with that last thought I'll post more tomorrow....
Thursday, December 25, 2008
Merry Christmas day 8
Ian was visited by Santa this morning--he heard the bells all the way from down the hall. Ian got a special toy sack just for him filled with goodies like a Thomas the Train pillow, blanket, books, etc. We are so grateful!
Ian likes to take the oxygen monitor off his toe (it glows red so it is his Rudolph toe). He thinks he can get away with us or his nurse not knowing but alas the beeping of the monitor gives him away and he just giggles!
He got his NG tube out for Christmas. He at first didn't want it out because of the pain the tape removal causes him. I used a uni-solve pad and got it off as gently as possible but the actually pulling it up and out was just as traumatic. It is done and he is enjoying not having it as we knew he would. He has an IV in his arm that should be the next to go and then the one in his neck. He'll have his surgical drain and the staples for longer. We continue to mix his meds in milk or yogurt....and yes we have lied to him about it being meds.
Ian is currently on the floor (with a blanket) playing with his new engines. He knows them all and is a champ at recognizing them and telling you which ones he is still missing or wants. He lines up a huge train and gets frustrated when the cars in the middle topple. Ian has also discovered the joys of games thanks to a few new Christmas gifts. We played endless rounds of 'dont spill the beans' and he giggles every time it toppled. Clever game trying to teach the concepts of balance, etc.
Last night, Ian watched muppet christmas carol (my personal holiday favorite) and liked it. He took a long time to fall asleep as he was excited for Santa but alas did go to sleep so that Santa could leave his toys for him.
For Christmas dinner this year Ian had......chicken nuggets and chocolate milk and we let him. Cheetos are a new favorite as are donuts--we wonder if his new liver plays a role in this???
We've had a great day and Ian's says Merry Christmas everyone!
Ian likes to take the oxygen monitor off his toe (it glows red so it is his Rudolph toe). He thinks he can get away with us or his nurse not knowing but alas the beeping of the monitor gives him away and he just giggles!
He got his NG tube out for Christmas. He at first didn't want it out because of the pain the tape removal causes him. I used a uni-solve pad and got it off as gently as possible but the actually pulling it up and out was just as traumatic. It is done and he is enjoying not having it as we knew he would. He has an IV in his arm that should be the next to go and then the one in his neck. He'll have his surgical drain and the staples for longer. We continue to mix his meds in milk or yogurt....and yes we have lied to him about it being meds.
Ian is currently on the floor (with a blanket) playing with his new engines. He knows them all and is a champ at recognizing them and telling you which ones he is still missing or wants. He lines up a huge train and gets frustrated when the cars in the middle topple. Ian has also discovered the joys of games thanks to a few new Christmas gifts. We played endless rounds of 'dont spill the beans' and he giggles every time it toppled. Clever game trying to teach the concepts of balance, etc.
Last night, Ian watched muppet christmas carol (my personal holiday favorite) and liked it. He took a long time to fall asleep as he was excited for Santa but alas did go to sleep so that Santa could leave his toys for him.
For Christmas dinner this year Ian had......chicken nuggets and chocolate milk and we let him. Cheetos are a new favorite as are donuts--we wonder if his new liver plays a role in this???
We've had a great day and Ian's says Merry Christmas everyone!
Wednesday, December 24, 2008
Christmas Eve Day 7
Ian got on the floor (with a blanket) today to play with a cool train set--not Thomas but still very cool. The track could probably go all the way around his bed but we set it up as to not be in the way as much as possible in the small PICU room. He got on his tummy to play with the engines even--I have a picture of this that I will post when I can download them. I am amazed at how well he is recovering. The physical therapist was with us and she said the best thing that we can do for Ian to "rebuild" is to just play really. He is up and walking to the bathroom now and he is in big boy undies. Clothes are still a bit of a problem just because of the wires and tubes but we are going to try special Christmas jammies tonight.
Ian knows tonight is Santa--still asks about the chimney. I've told him that Santa is so smart that he doesn't always need a chimney. We have his stocking, etc. We are going to leave his Santa presents at the nurses station until he is sleeping to bring them in.
He did OK today with meds by mouth--still a bit of a struggle. We've mixed a few in chocolate milk and yogurt to help them go down so Mary Poppins was right about a spoon full of sugar :) He doesn't seem too keen on the grape flavoring suprisingly and does better with chocolate milk dilution so we're sticking to that.
We'll be decorating a tiny tree I got at Target (which was a mad house today) and reading the Christmas story before I have to leave the PICU tonight. There is magic in the air even here in PICU.
Ian knows tonight is Santa--still asks about the chimney. I've told him that Santa is so smart that he doesn't always need a chimney. We have his stocking, etc. We are going to leave his Santa presents at the nurses station until he is sleeping to bring them in.
He did OK today with meds by mouth--still a bit of a struggle. We've mixed a few in chocolate milk and yogurt to help them go down so Mary Poppins was right about a spoon full of sugar :) He doesn't seem too keen on the grape flavoring suprisingly and does better with chocolate milk dilution so we're sticking to that.
We'll be decorating a tiny tree I got at Target (which was a mad house today) and reading the Christmas story before I have to leave the PICU tonight. There is magic in the air even here in PICU.
Tuesday, December 23, 2008
Is it Christmas yet?
Ian is doing very well so far. His bilirubin level keeps falling and he looks less yellow all the time. It could be a month for him to completely normalize.
I've ordered him lunch today and his favorites have returned to the top of the list so today he is having yogurt, string cheese, bread, chocolate milk, cheetos, and a rice crispie treat. He had 45g of protein yesterday and 1200 calories which is great. I have to write everything down that he eats--part of making sure his NG tube can come out.
Ian struggled a bit iwth the steroid this AM by mouth but we're going to try grape flavoring this afternoon to see if that helps.
He hasn't complained about pain really at all which is huge. The nurses comment that he is a tough and brave boy and we know it. They also say that he is super smart. I am sneaking in some "preschool" type things with him each day--looking for letters and numbers on things etc. We play I spy in his room and are starting to run out of things to see.
We're going to try to get him into undies and clothes of some sort today too.
Ian has asked if it is Christmas yet and if Santa will come down the chimney? So sweet and innocent. He doesn't know he already received the best gift ever just a bit early--a new liver! So yes Ian, it is Christmas.
I've ordered him lunch today and his favorites have returned to the top of the list so today he is having yogurt, string cheese, bread, chocolate milk, cheetos, and a rice crispie treat. He had 45g of protein yesterday and 1200 calories which is great. I have to write everything down that he eats--part of making sure his NG tube can come out.
Ian struggled a bit iwth the steroid this AM by mouth but we're going to try grape flavoring this afternoon to see if that helps.
He hasn't complained about pain really at all which is huge. The nurses comment that he is a tough and brave boy and we know it. They also say that he is super smart. I am sneaking in some "preschool" type things with him each day--looking for letters and numbers on things etc. We play I spy in his room and are starting to run out of things to see.
We're going to try to get him into undies and clothes of some sort today too.
Ian has asked if it is Christmas yet and if Santa will come down the chimney? So sweet and innocent. He doesn't know he already received the best gift ever just a bit early--a new liver! So yes Ian, it is Christmas.
Monday, December 22, 2008
Thomas the Train Day 5
Ian and I are watching Thomas the Train Holiday celebration for the second time this morning. The doctors came by for rounds and told Ian he had a new engine inside of him and Ian thought it was a new Thomas engine. Took some explaining to get that straight.
Ian had his central line tape changed today and that was not so swell. Even with the tape removal stuff it was still very unpleasant. I had to wear a little mask over my face when they did that. He also had some tape changed on an IV on his hand and that was actually better.
We've played Critter in the Candy again--a game I brought from home that I've had since my childhood. Ian loves it; especially when I find the Critter.
Ian's labs are still trending down. It may take over a month for him to not be yellow but we can see improvement even now. The doctors said that it usually takes for the bilirubin to get to 1 for them to notice the color change. The surgeon told me not to follow just one or two numbers or I'll go nuts.
Ian is now on a calorie count. If he can eat well enough on his own, he'll stop getting nutrition by IV. He had a pancake and a french toast stick this AM with a carton of chocolate milk. He can also get his NG tube out if he can take all of his meds orally. He hates that tube so we're using it as motivation that if he can do all meds by syringe then it can come out. We'll work on taking at least one med orally a day as he is on so many right now.
Many blessings have come our way and we are so thankful!
Ian had his central line tape changed today and that was not so swell. Even with the tape removal stuff it was still very unpleasant. I had to wear a little mask over my face when they did that. He also had some tape changed on an IV on his hand and that was actually better.
We've played Critter in the Candy again--a game I brought from home that I've had since my childhood. Ian loves it; especially when I find the Critter.
Ian's labs are still trending down. It may take over a month for him to not be yellow but we can see improvement even now. The doctors said that it usually takes for the bilirubin to get to 1 for them to notice the color change. The surgeon told me not to follow just one or two numbers or I'll go nuts.
Ian is now on a calorie count. If he can eat well enough on his own, he'll stop getting nutrition by IV. He had a pancake and a french toast stick this AM with a carton of chocolate milk. He can also get his NG tube out if he can take all of his meds orally. He hates that tube so we're using it as motivation that if he can do all meds by syringe then it can come out. We'll work on taking at least one med orally a day as he is on so many right now.
Many blessings have come our way and we are so thankful!
Sunday, December 21, 2008
Chocolate Milk on Day 4
Ian got chocolate milk today--he is cleared to eat anything he wants! Chicken nuggets were also requested but he didn't eat any once they arrived. Now that Ian can eat in his PICU room, Brett can as well which is huge in terms of brett eating.
I washed his special blanket today--it had gotten some blood on it earlier--and will be bringing it back to him tonight. I hope to trim his fingernails tonight too as they are ultra scratchy and snipping nails is a "mamma thing".
I opened up his special Thomas the Train holiday DVD to watch today and I must say it was nice to see some new episodes myself! We also went to the thomasandfriends.com website where he helped Harold the Helicopter catch the balloons (his favorite activity choice).
Ian's labs continue to be positive so that is good. He had labs drawn again recently and we are awaiting results. He started prograf yesterday and the doctors are watching for dosage information, etc.
We are so thankful for all those who have been praying for Ian--thank you, thank you, thank you!
I washed his special blanket today--it had gotten some blood on it earlier--and will be bringing it back to him tonight. I hope to trim his fingernails tonight too as they are ultra scratchy and snipping nails is a "mamma thing".
I opened up his special Thomas the Train holiday DVD to watch today and I must say it was nice to see some new episodes myself! We also went to the thomasandfriends.com website where he helped Harold the Helicopter catch the balloons (his favorite activity choice).
Ian's labs continue to be positive so that is good. He had labs drawn again recently and we are awaiting results. He started prograf yesterday and the doctors are watching for dosage information, etc.
We are so thankful for all those who have been praying for Ian--thank you, thank you, thank you!
Saturday, December 20, 2008
Day 3 in PICU
Ian is resting now and he needs it after kind of a rough night last night. He tends to waken a lot and not really remember or know where he is. Of course all the beeping equipment, etc. and frequent nurse visits don't help much either.
The doctors round in the morning and afternoon and nurses shift change AM and PM as well. Ian's nurse right now's name is Thomas and with a Thomas the Train fan--that works.
The liver enzyme labs are still trying to come into normal range--about 20% of liver transplants respond this way and right now it looks like Ian is in this category. He will get his next lab draw around 4pm.
I brought some Christmas decorations for Ian's room--just a few small things. I also brought pictures of Ian and our family for him too and his nurses to "see" Ian as he is in normal life and not with all these tubes and lines, etc.
Please continue to pray for all of us. We all need it.
The doctors round in the morning and afternoon and nurses shift change AM and PM as well. Ian's nurse right now's name is Thomas and with a Thomas the Train fan--that works.
The liver enzyme labs are still trying to come into normal range--about 20% of liver transplants respond this way and right now it looks like Ian is in this category. He will get his next lab draw around 4pm.
I brought some Christmas decorations for Ian's room--just a few small things. I also brought pictures of Ian and our family for him too and his nurses to "see" Ian as he is in normal life and not with all these tubes and lines, etc.
Please continue to pray for all of us. We all need it.
Thursday, December 18, 2008
I have a new liver!!!
Ian got his special call for a new liver on December 16,2008. It is his "Liver Day". We are so grateful for the donor family, for doctors and nurses and medical staff and all who have prayed and helped us in any way.
Ian started surgery on December 17, 2008 at 11am and came out doing well at 8pm. Doctors are pleased with how things went and are progressing. His labs are showing good signs of improvement and he has them drawn about every 4 to 6 hours at this point. His is able to have sips of water. He is wearing "hospital pants" aka a diaper which we are pretty sure he is not going to like being in a diaper again.
One of the big hurdles for Ian to cross is to be able to come off medicine that is helping his blood to vessels to be nice and wide and big for blood flow. That will be key. He is already off his breathing tube which is a biggie in terms of being able to move him and him to move.
Brett is being the primary care giver right now as Livia needs to be close to me for feeding purposes and she is not allowed in the PICU room. We are shifting in and out so that the other can eat, etc. One of us will be with him at all times and he didn't even like it when brett closed the door to the bathroom that was in his tiny room.
Ian's TV is operating quite up to speed which isn't too big a deal right now as Ian is sleeping a lot but will be major when he is more with it and wants to see Thomas the Train--particularly the "gordon with the jelly" epsiode currently in the DVD player. (I thankfully kept his travel bag packed with Thomas DVDs and books to just grab when we got this call--phew!) We have told the nurses that Thomas the Train is the big thing for Ian so to use it to motivate him, etc. I was playing our made up guessing game of "I'm thinking of an engine" where I give clues to him about an engine that he has to guess this morning and Ian was aware enough to play. His nurse on duty today knows Thomas really well to play with him too so that was wonderful! I brought a few of his engines with us but am bring the rest the engines when I go back tomorrow.
I'm posting to my own blog and Brett is posting to his as well so check those sites for more info.
Thank you to all--nurses, doctors, donor family, family and friends, anyone who has helped in any way!!!! God bless each of you.
Monday, December 8, 2008
Clinic visit
We went to liver clinic last week and a parent support meeting. Ian is doing better now (PELD is an 8 but he is still listedas a 14) although his abodmen is getting bigger--to be expected. He loved the trees and other Christmas things at the center but of course the butterflies were still the best to him. We didn't get to see Dr. Romero this time so Ian was sad. We did find out that we are near the record for longest pediatric wait time at CHOA. Not really a record we were aiming for......we've been waiting for 3 years now which is truly amazing as most kids wait just 6 months. Ian is just really stable and we know it is Heavenly Father helping him and us. We've started to talk to Ian about his transplant and what to expect. We got 2 books from the center to help us with that.....and Ian is looking forward to his airplane ride or daddy driving superfast.
Saturday, November 8, 2008
Insurance woes
So I am calling the insurance company again about Ian's meds being covered or rather not being covered. I'm getting experienced at the menu prompts and think I can do it in my sleep. Oh for the red tape!
Ian is doing well otherwise. He will have labs in about a week so I'll have more to update then. He got his flu shot recently as did the rest of the family less his little sister.
We've had some comments about his skin tone recently that make my claws want to come out but I am trying to be civil about it. We worry about him being teased in school if he still hasn't had his transplant by that point. What is a parent to do?
We are especially mindful and express gratitude at this Thanksgiving Season to everyone who helped in anyway with Ian's fundraising campaign. It is a huge relief to us to know those funds are there to help our little boy. Thank you, all!
Ian is doing well otherwise. He will have labs in about a week so I'll have more to update then. He got his flu shot recently as did the rest of the family less his little sister.
We've had some comments about his skin tone recently that make my claws want to come out but I am trying to be civil about it. We worry about him being teased in school if he still hasn't had his transplant by that point. What is a parent to do?
We are especially mindful and express gratitude at this Thanksgiving Season to everyone who helped in anyway with Ian's fundraising campaign. It is a huge relief to us to know those funds are there to help our little boy. Thank you, all!
Monday, October 27, 2008
Waiting to swallow a pill.....
Ian had labs just after I came home from the hospital with our little girl, Livia Janene. He did a great job keeping the trend and went to get some french toast with Dad afterwards as a special treat. He loves French Toast and just to let everyone know...Waffle House does not have French Toast on their menu. Shocking we know and learned it the hard way.
Ian's lab values have fluctuated a bit, which is normal. His PELD is up just a bit but not too much. He'll need labs again at the beginning of November. He continues to be stable for which we are so grateful for.
We have a specialist visit in November at MUSC and then head to the CHOA transplant center for a clinic visit in December getting so see the beloved Dr. Romero.
While I've been somewhat out of commission healing from my c-section, Brett has taken on the medication dosing, etc. and has done a great job. He even reordered meds that were running low. I've been the one to do almost all the dosing, ordering, mixing, etc. and it was interesting trying to teach my mom how to use hte syringes, etc. as our backup medication person. I never realized that syringe technique is an art almost. I've just started on the medication tasks again for Ian and it has been nice to have a break. Oh for the days when Ian can swallow a pill!
Ian's lab values have fluctuated a bit, which is normal. His PELD is up just a bit but not too much. He'll need labs again at the beginning of November. He continues to be stable for which we are so grateful for.
We have a specialist visit in November at MUSC and then head to the CHOA transplant center for a clinic visit in December getting so see the beloved Dr. Romero.
While I've been somewhat out of commission healing from my c-section, Brett has taken on the medication dosing, etc. and has done a great job. He even reordered meds that were running low. I've been the one to do almost all the dosing, ordering, mixing, etc. and it was interesting trying to teach my mom how to use hte syringes, etc. as our backup medication person. I never realized that syringe technique is an art almost. I've just started on the medication tasks again for Ian and it has been nice to have a break. Oh for the days when Ian can swallow a pill!
Sunday, September 21, 2008
CHOA Visit
Ian was a champ at our CHOA clinic visit. He chose his arm for labs and didn't cry or wimper or anything. He had extra blood drawn this time as he needed vitamin levels tested. Dr. Romero again was Ian's hero and I think Ian would do anything he asked of him. He got more stickers than he needed as usual--I think we are growing quite the collection.
As usual we were not lucky enough to find a wagon to transport Ian from parking garage to 6th floor clinic area through the maze of cafeteria, etc. so we did our usual "race"to help him along. Brett and I joke that we will be able to get a wagon when Ian is 6 or so and doesn't need the help. We stopped for frozen yogurt (ice cream to Ian as we don't want him thinking that yogurt alaways is like ice cream since it is staple on his high protein diet) on the way after clinic as Ian's reward. It may become routine now. He loved it!
As usual we were not lucky enough to find a wagon to transport Ian from parking garage to 6th floor clinic area through the maze of cafeteria, etc. so we did our usual "race"to help him along. Brett and I joke that we will be able to get a wagon when Ian is 6 or so and doesn't need the help. We stopped for frozen yogurt (ice cream to Ian as we don't want him thinking that yogurt alaways is like ice cream since it is staple on his high protein diet) on the way after clinic as Ian's reward. It may become routine now. He loved it!
Sunday, September 7, 2008
New Specialist
Ian's new specialist was great. The visit was a success to everyone but Ian was thrilled because in the waiting room there was a TRAIN TABLE. Score one for Dr. Pillai immediately! Ian loved it and was a great patient that day. He had to wear a cute blue hospital gown for this first visit which was more comprehensive than future visits will be. He weighed almost 35 pounds and is 37 inches tall. Growing like a champ!
We head to Atlanta for a transplant clinic visit in 1.5 weeks and I'm sure talk of Dr. Romero and the butterfly hosptial will pick up.
We head to Atlanta for a transplant clinic visit in 1.5 weeks and I'm sure talk of Dr. Romero and the butterfly hosptial will pick up.
Sunday, August 31, 2008
PELD is a 12....
So Ian's PELD is a 12. It is labor day weekend. Holidays always make me nervous as they are big transplant times--more people travel=more accidents=more donor organs. I never thought of it that way until our coordinator told us.
This time of year (in about 2 days) will mark the three year anniversary of Ian's liver disease diagnosis. I will NEVER forget the phone call telling us to go to the ER immediately, etc. I will NEVER forget just breaking down and crying helplessly with Brett in the hospital bridge after the offical diagnosis and outlook was described to us. That day has been the absolute lowest of all my days and I hope I never have to relive anything like it and never would wish anything like that on anyone.
Ian continues to grow and develop wonderfully. He is into Thomas the Train right now and just earned Herold the Helicopter for making good choices for a week. He is working on earning another engine, likely Henry, for another week of good choices.
We meet with our new specialist on Tuesday and hope that he is as caring and concerned about Ian as our former specialist, Dr. Cordle in Roanoke. We have been really blessed with a great medical team that help Ian to be so stable.
This time of year (in about 2 days) will mark the three year anniversary of Ian's liver disease diagnosis. I will NEVER forget the phone call telling us to go to the ER immediately, etc. I will NEVER forget just breaking down and crying helplessly with Brett in the hospital bridge after the offical diagnosis and outlook was described to us. That day has been the absolute lowest of all my days and I hope I never have to relive anything like it and never would wish anything like that on anyone.
Ian continues to grow and develop wonderfully. He is into Thomas the Train right now and just earned Herold the Helicopter for making good choices for a week. He is working on earning another engine, likely Henry, for another week of good choices.
We meet with our new specialist on Tuesday and hope that he is as caring and concerned about Ian as our former specialist, Dr. Cordle in Roanoke. We have been really blessed with a great medical team that help Ian to be so stable.
Friday, August 15, 2008
Ian's Update
So this blog is planned to be all about Ian and his health updates. Ian is currently awaiting liver transplant as he has biliary atresia. He is doing so well and continues to defy the odds. We have been waiting since November of 2005 at this point. The transplant team at CHOA have joked with us asking if he has had a secret transplant that they don't know about.
Ian had labs today and was an absolute champ! He held out his arm, didn't flinch or even cry during hte whole thing. It was the first time we had them done here in South Carolina and we went to MUSC at the pediatric laboratory. We will find out results soon.
He is still on seven medications which is down from previous numbers so we are thrilled. He is able to take a chewable multivitamin now. We recently changed the formulation of one of his meds and that is not going so well--I'm hiding it in his yogurt now and it is better. What would I do without yogurt. He now gets all but 2 meds in morning yogurt. Yogurt is loaded with protein and has good calories behind it. We go through about 3 jumbo tubs (with just ian eating it) a week.
Ian is potty trained now and likes to sport his Thomas the Train undies. He got a train table as his big potty training reward :) His favorite engine changes around but usuals in the listing are Thomas, Gordon, Toby and Percy. He likes to quote lines from the two Thomas DVDs that we have and is very excited if the library has a new one for us to check out.
Ian will be a big brother in about 8 weeks and is my helper getting hte nursery ready. He has discovered his old baby toys and books and is actually playing with them for extended periods of time while I sort clothes, etc. He is a great helper.
Someone today in Publix stopped me and asked if Ian was juandiced and I replied that he was and was awaiting a liver transplant. This was the first inquiry in South Carolina. I had lots of that in Virginia when he was just a small baby asking me if he wore make-up, why he was so yellow, etc. It always amazes me what people will ask or say and has really taught me to be much more aware of issues.
We head to CHOA in September to the wonderful land of "the butterfly hospital". Ian loves the butterfly decor in CHOA and is especially fond of Dr. Romero there, the head pediatric gastroenterologist. Dr. Romero is wonderful--caring and on top of Ian's health needs.
My goal is to try to update this page bi-weekly at least so check back often with the latest news on Ian.
Ian had labs today and was an absolute champ! He held out his arm, didn't flinch or even cry during hte whole thing. It was the first time we had them done here in South Carolina and we went to MUSC at the pediatric laboratory. We will find out results soon.
He is still on seven medications which is down from previous numbers so we are thrilled. He is able to take a chewable multivitamin now. We recently changed the formulation of one of his meds and that is not going so well--I'm hiding it in his yogurt now and it is better. What would I do without yogurt. He now gets all but 2 meds in morning yogurt. Yogurt is loaded with protein and has good calories behind it. We go through about 3 jumbo tubs (with just ian eating it) a week.
Ian is potty trained now and likes to sport his Thomas the Train undies. He got a train table as his big potty training reward :) His favorite engine changes around but usuals in the listing are Thomas, Gordon, Toby and Percy. He likes to quote lines from the two Thomas DVDs that we have and is very excited if the library has a new one for us to check out.
Ian will be a big brother in about 8 weeks and is my helper getting hte nursery ready. He has discovered his old baby toys and books and is actually playing with them for extended periods of time while I sort clothes, etc. He is a great helper.
Someone today in Publix stopped me and asked if Ian was juandiced and I replied that he was and was awaiting a liver transplant. This was the first inquiry in South Carolina. I had lots of that in Virginia when he was just a small baby asking me if he wore make-up, why he was so yellow, etc. It always amazes me what people will ask or say and has really taught me to be much more aware of issues.
We head to CHOA in September to the wonderful land of "the butterfly hospital". Ian loves the butterfly decor in CHOA and is especially fond of Dr. Romero there, the head pediatric gastroenterologist. Dr. Romero is wonderful--caring and on top of Ian's health needs.
My goal is to try to update this page bi-weekly at least so check back often with the latest news on Ian.
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