White Blood Count - 280 cells/microliter
Absolute Neutrophil Count - 80 cells/microliter
Segmented neutrophils - 27.3%
Band Neutrophils - 0%
Lymphocytes - 48.5%
Monocytes - 21.2%
Eosinophils - 3%
Basophils - 0%
Have I mentioned how much I HATE the breathing treatments Cael is getting 3 times a day? Let me say it again. I HATE them. This morning, his treatment was at 4 AM. The respiratory therapist was late (as usual), and Cael was awake. So he spent the entire 2 hours crying and crying. He got Adivant, an antinausea that he has every 8 hours, but that didn't help him to sleep like they thought it would. We also gave him a few pushes of morphine, which didn't help to calm him down at all. Absolutely nothing would help him calm down, except for taking him out of it when it was done. And to make things worse, I found out a few hours later that the respiratory therapist didn't hook up the machine correctly, so Cael didn't even get ANY of the medication. So we tortured him for 2 hours for absolutely no reason.
We have had so many problems with the respiratory therapists at this hospital. They don't seem to know what is going on. On several occasions, Adam or I would have to show them how to set up the machine and the box/tent for Cael to be in. The guy last night was the worst one yet. He didn't know how the machine worked, so Adam showed him. Then he still did it wrong for the 4 AM treatment, and Cael got none of the medication. He also gets a xopenex treatment (a nebulized medicine that he breathes in through a mask to help open up his bronchioles), which the respiratory therapist didn't do enough of. There was still at least 1 full dose of the medicine in the mask when we woke up. Sigh...
The doctors are very happy with the progress that Cael is making with his cell counts right now. One doctor, yesterday, said that they usually don't see ANC counts above 0 until day 16-18, but Cael started showing them at day 14. The counts will go up and down several times, but once they are really going, they will increase exponentially, I think. Every cell will divide, then each of those divide, so the counts should start going up faster and faster. They want the ANC above 500 cells/microliter for 3 days to consider him engrafted, but they need it above 2500 before they will let him leave the hospital.
I am so happy that he is in the engraftment process. However, it is making me really count down until we get to leave here. I still don't have a good idea of how long it will be before we get to leave, but the more his cells increase, the closer it is, and I think that is making me get a little more stir crazy! I want to leave the hospital so much. I just want to be in a normal bed, no more vital signs in the middle of the night, and get back to some sort of normalcy. Until then, I'll keep counting down...
Saturday, November 10, 2012
Friday, November 9, 2012
ANC and monocytes
Cael has been doing ok so far today. It is encouraging to see that he really wants to drink. When I give him a bottle of pedialyte, he guzzles the 2 ounces down in just a couple minutes. He kept down the first 2 ounces, but then threw up the 2nd bottle I gave him. We will keep trying. Sooner or later he is bound to keep it down. I don't want to give him something I know is going to make him throw up, but since he kept some down this morning, I am hoping that trend will continue.
The good new of the day is that Cael's ANC is up to 30 cells/ microliter! They are looking for 500 cells/microliter for 3 days in a row to know that he has truly engrafted and his cells are multiplying. He also has 25% monocytes again, too. His white blood cell count has increased a little, up to 190 cells/ microliter.
In case I haven't explained it before, neutraphils and monocytes are both types of white blood cells that are responsible for fighting infections. That is why they are looking so closely at these two types of cells and how many of them he has. There is another type of blood test they can do that determines whether he has T cells, and if they are functioning. I don't know when they will do that test, but I haven't heard anything about it yet.
He has started to get the shakes lately. We especially notice it after he gets his breathing treatments. When he gets done, and we pick him up, his whole body seems to be trembling a little bit. I only realized it was happening a day or two ago, and I think he might do it at other times as well. The doctor thinks it could be from a number of the medications he is getting, and doesn't think it is necessarily the ribavirin. However, I still hate that stupid breathing treatment. Every morning, Cael has been waking up an hour into it and just cries and kicks for another hour until it is over. There is nothing we can do about it either. I hold him the best I can with him being in the box, but it usually doesn't really solve the problem. And there are no other medications known to help treat RSV and parainfluenza 3. So this is what we have to deal with. I'm sure it could be worse though, right?
Thursday, November 8, 2012
November 8
The past few days have been all about the same. Cael is still quite uncomfortable most of the day, with little bits of playtime in between. We, obviously know he feels bad, but when every nurse comments about how he just isn't himself, you know something is up. He certainly has a reputation around here as being the cutest, best behaved, happy baby. They even call him the gerber baby. Everyone who comes in tries to get at least one smile before they leave. If they can't, they are quite bummed. lol.
His white blood cell count is still going up, but all the monocytes are gone again, and all the WBC are back to lymphocytes. That's not unexpected. They told us the numbers would be a bit of a roller coaster, but they will keep a close eye on everything. The ANC is still at 0, too. I guess a cord blood transplant usually takes a bit longer than a typical bone marrow transplant for the neutraphils to appear. So he is also getting GCSF, which is a medication that helps the cells multiply.
The doctors put Cael on a lasik drip a few days ago in order to get his weight down. He was taking in so much fluid from all the medications, but not getting rid of enough, so his weight kept going up. So now, he is down too much! So they are reducing the amount of lasik to find the right balance. It's so strange that I can tell that he has lost some weight. He feels lighter, even though it is only about 1 pound difference.
He has an appetite again, but he doesn't seem to be able to keep anything down. He went about a week without drinking anything at all again, but yesterday he took some, but then threw up immediately. He's been throwing up anyway, regardless of eating or not, but milk and even pedialyte make it worse. We have dealt with the throwing up so much we have a system down. We have the suction real close so we can get everything out of his mouth real quick and keep things clean as possible. Cael even tries to help sometimes. lol. At least he isn't afraid of the mouth suction!
The doctors say that he is doing very well. I know they were expecting some issues with the RSV and para influenza 3 that he had before the transplant, but it appears he is handling those better than expected at this point. I know that those still might cause some problems once his cells start to appear more, but at least for now he seems to be doing okay with that stuff.
His white blood cell count is still going up, but all the monocytes are gone again, and all the WBC are back to lymphocytes. That's not unexpected. They told us the numbers would be a bit of a roller coaster, but they will keep a close eye on everything. The ANC is still at 0, too. I guess a cord blood transplant usually takes a bit longer than a typical bone marrow transplant for the neutraphils to appear. So he is also getting GCSF, which is a medication that helps the cells multiply.
The doctors put Cael on a lasik drip a few days ago in order to get his weight down. He was taking in so much fluid from all the medications, but not getting rid of enough, so his weight kept going up. So now, he is down too much! So they are reducing the amount of lasik to find the right balance. It's so strange that I can tell that he has lost some weight. He feels lighter, even though it is only about 1 pound difference.
He has an appetite again, but he doesn't seem to be able to keep anything down. He went about a week without drinking anything at all again, but yesterday he took some, but then threw up immediately. He's been throwing up anyway, regardless of eating or not, but milk and even pedialyte make it worse. We have dealt with the throwing up so much we have a system down. We have the suction real close so we can get everything out of his mouth real quick and keep things clean as possible. Cael even tries to help sometimes. lol. At least he isn't afraid of the mouth suction!The doctors say that he is doing very well. I know they were expecting some issues with the RSV and para influenza 3 that he had before the transplant, but it appears he is handling those better than expected at this point. I know that those still might cause some problems once his cells start to appear more, but at least for now he seems to be doing okay with that stuff.
Tuesday, November 6, 2012
Holidays Approaching
I am a little bummed that we will very likely be spending Thanksgiving in the hospital. It is Cael's first Thanksgiving and first Christmas, but we won't be able to be home for them. I'm not much of a cook, but I certainly plan to learn how to cook at least a good Thanksgiving turkey and Christmas ham, and of course, all the sides. There may only be 3 of us (and only 2 that really eat the food), but I want the pictures and the memories of the holidays.
We also won't be able to have the big first birthday party and first Christmas for him. We might be out of the hospital for both, but we probably won't be back at our own home. And as neither of us have been working for the past 3 1/2 months, we really won't be able to do the big bang that we would have liked to do. I'm not trying to throw a pity party for myself or anything...well maybe a little... I know a lot of all that is lost on a 1 year old, but that really doesn't matter, does it?
Ugh...I hate being down. Just not me. So! Let's change that. I absolutely LOVE going back and watching videos and looking at pictures of Cael when he was smaller. He has grown so much since we started in the hospital in July! He has also gotten a lot stronger. He sits up very well now, can reach for things without falling over, and can stand so well! He is nowhere near crawling or walking. I think he just doesn't have the need for those things yet. I was so worried about that stuff for a while, but have really calmed down about it. I really do think that once he gets out of here he will hit all those milestones just fine.
We also won't be able to have the big first birthday party and first Christmas for him. We might be out of the hospital for both, but we probably won't be back at our own home. And as neither of us have been working for the past 3 1/2 months, we really won't be able to do the big bang that we would have liked to do. I'm not trying to throw a pity party for myself or anything...well maybe a little... I know a lot of all that is lost on a 1 year old, but that really doesn't matter, does it?
Ugh...I hate being down. Just not me. So! Let's change that. I absolutely LOVE going back and watching videos and looking at pictures of Cael when he was smaller. He has grown so much since we started in the hospital in July! He has also gotten a lot stronger. He sits up very well now, can reach for things without falling over, and can stand so well! He is nowhere near crawling or walking. I think he just doesn't have the need for those things yet. I was so worried about that stuff for a while, but have really calmed down about it. I really do think that once he gets out of here he will hit all those milestones just fine.
Monday, November 5, 2012
Engraftment day 2
Today was pretty much like the last few. Cael had a bit of a fever today, which is likely due to the engraftment, and his rash has spread to most of his body. The doctors have added a lasik drip (diuretic) because his weight is increasing, probably due to an excess of fluid in his body, called hypervolemia. They want to make sure he doesn't have too much fluid and let it get into his lungs, so they want to make him pee a lot to get all the fluid out.
The doctors today don't think we will be leaving in 2 weeks. I figured it was a little ambitious of a timeline. But that is ok. They just want to make sure he is ready to leave. I'm hoping by the end of the month we will be ready to go. They want to make sure he has engrafted, which will be around 14-21 days from the transplant (so another week or 2), he needs to be off oxygen day and night (he needs it when sleeping right now), and he needs to be able to take all his meds orally (right now he is throwing up too much). The ribavirin (breathing treatment) can be given orally when we leave, if it is still needed. He can leave the hospital while still being positive for RSV or paraflu, but they want to be sure he has T cells that are functioning properly, to make sure he will be able to fight off the rest of the infections without medical intervention at the hospital.
He did have a little stretch of good time today. When the physical therapist came, he was very happy and playful. He did a few of the things she wanted him to do. He seems to do a lot more when no one is trying to convince him. I can't wait to get out of here and be able to plop him on the ground with all his toys and just let him try to move around. I think that is going to be the best way for him to start moving. I think the physical therapy is helping to show me some ways to help him, but he just doesn't seem to want to do the things she is trying to convince him of. I feel like I should record him doing things when we aren't pushing him, just to prove to the physical therapist that he does! lol. I know she believes me when I say he does, but still...
Cael is going to LOVE Christmas time. I was opening something with tissue paper in it the other day, and I gave all the paper to Cael. He just loved playing with it. I think for Christmas we will just wrap a bunch of empty boxes and let him have fun ripping everything open. That's all they care about anyway, right? :)
The doctors today don't think we will be leaving in 2 weeks. I figured it was a little ambitious of a timeline. But that is ok. They just want to make sure he is ready to leave. I'm hoping by the end of the month we will be ready to go. They want to make sure he has engrafted, which will be around 14-21 days from the transplant (so another week or 2), he needs to be off oxygen day and night (he needs it when sleeping right now), and he needs to be able to take all his meds orally (right now he is throwing up too much). The ribavirin (breathing treatment) can be given orally when we leave, if it is still needed. He can leave the hospital while still being positive for RSV or paraflu, but they want to be sure he has T cells that are functioning properly, to make sure he will be able to fight off the rest of the infections without medical intervention at the hospital.
He did have a little stretch of good time today. When the physical therapist came, he was very happy and playful. He did a few of the things she wanted him to do. He seems to do a lot more when no one is trying to convince him. I can't wait to get out of here and be able to plop him on the ground with all his toys and just let him try to move around. I think that is going to be the best way for him to start moving. I think the physical therapy is helping to show me some ways to help him, but he just doesn't seem to want to do the things she is trying to convince him of. I feel like I should record him doing things when we aren't pushing him, just to prove to the physical therapist that he does! lol. I know she believes me when I say he does, but still...
Cael is going to LOVE Christmas time. I was opening something with tissue paper in it the other day, and I gave all the paper to Cael. He just loved playing with it. I think for Christmas we will just wrap a bunch of empty boxes and let him have fun ripping everything open. That's all they care about anyway, right? :)
Sunday, November 4, 2012
Engraftment?
Today was another day like yesterday. Lots of discomfort. They gave him a morphine pump, which we can control. I try not to give it to too often. I don't want to rely on that all the time to help him feel better. However, tonight, he has been trying to fall asleep since 7:30, and it is now 11:00. I gave him 4 pumps of the morphine, but he still is very restless. There is a plus side to the fact that he seems to be aching all over. It seems that he might be engrafting.
There are a few signs of engraftment, including body aches, fever, and of course his blood make up. His white blood cell count is up to 0.10 and his white blood cell make up has started to change. As engraftment happens, the monocyte cells will start to appear. His cells are now 25% monocytes, which is a good sign. The ANC (Absolute Nuetrophil Count) is still at 0. They expect that number to be above 0.5 before he is able to leave the hospital.
He has the body aches, which are really pains in his bones from the cells. He has had a fever on and off the past couple days. Not too high. The highest it got was 100.8 today, and it quickly dropped to 99.6 degrees about 10 minutes later. So it seems that he is starting to engraft. We will see how quickly the process goes, but one of the doctors seems to think we could possibly be out of the hospital in 2 weeks or so. I am going to assume that is wishful thinking, and expect it to be longer, but be very happy if it is really 2 weeks.
Adam is back from his weekend in Austin. Cael seemed to miss him. As Adam walked passed me holding Cael, Cael reached up for Adam to pick him up. Now they are sitting on his bed waiting for Cael to fall asleep. He is being such a bedtime warrior tonight. He just doesn't want to sleep! On the plus side, this will probably help him sleep all the way through the breathing treatment in the morning.
There are a few signs of engraftment, including body aches, fever, and of course his blood make up. His white blood cell count is up to 0.10 and his white blood cell make up has started to change. As engraftment happens, the monocyte cells will start to appear. His cells are now 25% monocytes, which is a good sign. The ANC (Absolute Nuetrophil Count) is still at 0. They expect that number to be above 0.5 before he is able to leave the hospital.
He has the body aches, which are really pains in his bones from the cells. He has had a fever on and off the past couple days. Not too high. The highest it got was 100.8 today, and it quickly dropped to 99.6 degrees about 10 minutes later. So it seems that he is starting to engraft. We will see how quickly the process goes, but one of the doctors seems to think we could possibly be out of the hospital in 2 weeks or so. I am going to assume that is wishful thinking, and expect it to be longer, but be very happy if it is really 2 weeks.
Adam is back from his weekend in Austin. Cael seemed to miss him. As Adam walked passed me holding Cael, Cael reached up for Adam to pick him up. Now they are sitting on his bed waiting for Cael to fall asleep. He is being such a bedtime warrior tonight. He just doesn't want to sleep! On the plus side, this will probably help him sleep all the way through the breathing treatment in the morning.
Saturday, November 3, 2012
Not His Day
Today was just NOT Cael's day. He was miserable all day. He woke up and was a bit fussy and uncomfortable seeming. Then Adam's aunt and uncle stopped by. They seem to love cuddling Cael. However, Cael just wasn't happy while they were here either. It didn't help matters that I was trying to keep Cael awake until 11:00, for his breathing treatment, only to find out that it wasn't going to be until 1:00 pm. I was pretty ticked about that, but we finally have a new schedule for the breathing treatments - 5 am, 1 pm, and 7 pm. That was the best I could get in order to work with his napping schedule a bit. Tomorrow should be better with that.
Anyways, he finally started feeling better, right as he went into the tent for the breathing treatment. He stayed awake for about an hour of it, just playing and kicking. I think it was the fact that he had a dose of morphine to help with his discomfort. Once he woke up from the treatment, he was pretty miserable again. The nurse even made comment about how uncomfortable he seemed. The nurses know that he hardly cries, so when he was crying today, she knew something wasn't quite right.
So we got a lot more cuddling in today. With Adam being back in Austin for the weekend, it's all up to me to comfort him. Not that I mind, but I am exhausted tonight. The night nurse said it seemed like I didn't sleep well last night. I must have been tossing a lot. I know I woke up a few times when they were in and out. Tonight doesn't look very promising either. His respiratory rate is high, so the nurse is going to come check on him often tonight to make sure he is doing ok.
One bit of good news. Another doctor confirmed what the doc said yesterday about the CT looking better than the last one. Yay! I'm holding out hope that he is at his worst now, and things will just get better.
Anyways, he finally started feeling better, right as he went into the tent for the breathing treatment. He stayed awake for about an hour of it, just playing and kicking. I think it was the fact that he had a dose of morphine to help with his discomfort. Once he woke up from the treatment, he was pretty miserable again. The nurse even made comment about how uncomfortable he seemed. The nurses know that he hardly cries, so when he was crying today, she knew something wasn't quite right.
So we got a lot more cuddling in today. With Adam being back in Austin for the weekend, it's all up to me to comfort him. Not that I mind, but I am exhausted tonight. The night nurse said it seemed like I didn't sleep well last night. I must have been tossing a lot. I know I woke up a few times when they were in and out. Tonight doesn't look very promising either. His respiratory rate is high, so the nurse is going to come check on him often tonight to make sure he is doing ok.
One bit of good news. Another doctor confirmed what the doc said yesterday about the CT looking better than the last one. Yay! I'm holding out hope that he is at his worst now, and things will just get better.
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