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!
Tuesday, January 6, 2009
Sunday, January 4, 2009
I'm a sunbeam Day 18
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 :)
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 :)
Saturday, January 3, 2009
Medicine Change DAy 17
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.
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
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....
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....
Friday, January 2, 2009
Day 15 New Years Day
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!
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!
Wednesday, December 31, 2008
New Years Eve Day 14
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!
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
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!
Subscribe to:
Posts (Atom)
