So I know I haven't written in Katlyn's blog for a couple of days, but I was taking a little break. Sometimes a girl just needs to sit around and do nothing. And I must say it has been pretty relaxing and fun trying to catch up on Heroes while the show is on a hold for a few weeks. Friends of ours burnt the episodes up till now, so we're trying to get on track, and I must say the show is awesome. Now I have to try to catch everyone up on what's going on.
Wednesday was a pretty stressful day and I expected it would be. IVIG days are always so stressful. The day started off really great. Katlyn got to play really hard for the whole morning and right before her nap the nurses from NICU came up to put her IV in. It was a textbook IV. One poke, no wiggling around and her IV was in place. I swear I must jinx the situation or something. I was saying that we never really have a problem with her IVIG. I went to get my prescription filled at the drug store and tanning and when I came back my girl was quite upset. She looked as though something was really wrong. At first glance I thought it might have been because she wanted me to come in the room. When she has IVIG she doesn't really have the freedom that she usually does. She's not able to just play. Instead she has to be watched 24/7 to make sure she doesn't pull her IV out. Well, when I came in the room John notified me that they had a hell of a time since I left. The vein that Katlyn had the IV in blew, so the NICU nurses had to come back up and put another one in. The did get it in, but it was secured well enough. John said that it was just flopping around. So she lost that one too and they had to come back up again. So the third one had to go in. Poor girl. Meanwhile, the IVIG was put on hold and it's only good for so long. Her nurse did the calculation and notified us that the IVIG would be expired before the infusion was done. Great. So he had to order another bottle, and luckily it was from the same lot. She finished her infusion around 10:30. I know we were pretty glad, but I bet Katlyn was even more (I could sense the relief).
Yesterday was a pretty good day also. Katlyn's neutrophils were 1300. I'm sure that we'll be going to do the gene therapy. I would almost go as far as saying I'm positive. The question really is just where are we going. I don't really have a preference. Maryland is closer than Italy, yes. I don't care so much. I just know that I want the gene therapy done and not a bone marrow transplant. So far her numbers have been perfect. She gets the PEG ADA again today. Our pooh girl is going through so much.
It's really funny how here at the IWK we see some of the most ill children. And the funny thing is that they are the happiest kids I have even seen. I have met a lot of families with children that are going through so much, and when you see them they have the biggest glowing smiles you'd ever see. They get picked at and poked so much that you'd think that they'd be miserable. But they're not. I'm telling you, if I could have just one ounce of courage that Katlyn has I would be an incredibly strong person. That little girl smiles so much. She really is such a blessing. it does make it a little easier to see that she isn't miserable. Despite everything that she goes through, she is really the happiest, most easy-going baby I have ever seen. What a strong girl.
Wednesday was a pretty stressful day and I expected it would be. IVIG days are always so stressful. The day started off really great. Katlyn got to play really hard for the whole morning and right before her nap the nurses from NICU came up to put her IV in. It was a textbook IV. One poke, no wiggling around and her IV was in place. I swear I must jinx the situation or something. I was saying that we never really have a problem with her IVIG. I went to get my prescription filled at the drug store and tanning and when I came back my girl was quite upset. She looked as though something was really wrong. At first glance I thought it might have been because she wanted me to come in the room. When she has IVIG she doesn't really have the freedom that she usually does. She's not able to just play. Instead she has to be watched 24/7 to make sure she doesn't pull her IV out. Well, when I came in the room John notified me that they had a hell of a time since I left. The vein that Katlyn had the IV in blew, so the NICU nurses had to come back up and put another one in. The did get it in, but it was secured well enough. John said that it was just flopping around. So she lost that one too and they had to come back up again. So the third one had to go in. Poor girl. Meanwhile, the IVIG was put on hold and it's only good for so long. Her nurse did the calculation and notified us that the IVIG would be expired before the infusion was done. Great. So he had to order another bottle, and luckily it was from the same lot. She finished her infusion around 10:30. I know we were pretty glad, but I bet Katlyn was even more (I could sense the relief).
Yesterday was a pretty good day also. Katlyn's neutrophils were 1300. I'm sure that we'll be going to do the gene therapy. I would almost go as far as saying I'm positive. The question really is just where are we going. I don't really have a preference. Maryland is closer than Italy, yes. I don't care so much. I just know that I want the gene therapy done and not a bone marrow transplant. So far her numbers have been perfect. She gets the PEG ADA again today. Our pooh girl is going through so much.
It's really funny how here at the IWK we see some of the most ill children. And the funny thing is that they are the happiest kids I have even seen. I have met a lot of families with children that are going through so much, and when you see them they have the biggest glowing smiles you'd ever see. They get picked at and poked so much that you'd think that they'd be miserable. But they're not. I'm telling you, if I could have just one ounce of courage that Katlyn has I would be an incredibly strong person. That little girl smiles so much. She really is such a blessing. it does make it a little easier to see that she isn't miserable. Despite everything that she goes through, she is really the happiest, most easy-going baby I have ever seen. What a strong girl.
