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!
Monday, December 29, 2008
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.
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