We are still in the hospital. Cael threw up his medicine 3 times last night. That along with the wonky levels of cyclosporin are keeping him in here at least until tomorrow. They stopped the cyclosporin for a day and his level got too low, so they started again today with a slightly lower dose. They want to check that again tomorrow to make sure it is under control before letting him leave.
I think they also want him to not be throwing up his meds. He did okay this morning, not throwing anything up, but tonight he threw up once. He gets so many oral meds! He has 4 that are every 12 hours, 2 that are every 8 hours, 1 that is 4 times a day, and 1 that is every morning. So every morning there are 8 meds for him to take! They are all liquid and are given by a syringe. We tried adding some cherry flavoring tonight. I don't know if it helped or not. Some of the meds are absolutely disgusting (I've tasted most of them, just so I know) and some are ok. I'm half tempted to mix all the meds together, add some water to thin it out, add some flavoring and give it to him in a bottle. I'm just concerned he won't like the taste, and he won't drink it all. Then we will have wasted all of the meds.
So with the timing of the meds, we have to get up at midnight to give the 8 hour meds. Tonight, though, we also have to get up at 2:00 AM to give another med that is off on the timing. Once we leave here, we will be able to get the timing back to how we want it. He also gets some inhaled medicine morning and evening. Right now, of course, those aren't coinciding with his sleeping schedule, so when we leave here, we will have to fix that as well!
We are learning, though. We are figuring out our own little tricks that seems to help, like spreading out the meds so there is 15-20 minutes between each one, so if he does throw up, we only have to re-dose one medication, instead of them all.
I'm not sure if we will get to leave tomorrow. The doctors are very vague about all of it. They aren't in a rush to send him out of here. They will just keep pushing it one more day every day they don't like how things are going.
Monday, November 26, 2012
Sunday, November 25, 2012
Argh! Maybe NOT going home tomorrow
Well, it looks like we might not be leaving tomorrow after all. Cael started taking the cyclosporin by mouth on Friday. A normal level of cyclosporin is around 250. This morning, before he took his oral dose, it was 425 (they didn't get that number back until way after he took the oral dose). They retested, thinking the blood was taken from the wrong line (the line that the put the cyclosporin in gets a coating of the medicine on it, so they have to take it from the other line). That test came back at 950!!! There is a level that causes concern for the liver and kidneys, but he hasn't gotten up to that just yet. I think that number is around 1200. It seems like he just isn't absorbing it like he should be. So, I don't think they will be sending us home. They haven't actually said one way or another. I don't know when they will.
He also has pretty much lost his voice. When he cries or tries to talk, just a little whisper comes out. They put a scope up his nose and into his throat to look at his vocal cords. The doctor said he has swollen vocal cords, probably caused by reflux. He never had reflux before, but she said it could have just started. So now we just have to make sure he stays sitting up after eating for awhile. He is already on protonics (like Zantac) to help, but he has been on that for several weeks now.
So....yeah....kind of bummed. We were so set on leaving tomorrow! Who knows, though, the doctors may let us leave and just have us come back every day in order to check on his cyclosporin levels. We will find out tomorrow!
He also has pretty much lost his voice. When he cries or tries to talk, just a little whisper comes out. They put a scope up his nose and into his throat to look at his vocal cords. The doctor said he has swollen vocal cords, probably caused by reflux. He never had reflux before, but she said it could have just started. So now we just have to make sure he stays sitting up after eating for awhile. He is already on protonics (like Zantac) to help, but he has been on that for several weeks now.
So....yeah....kind of bummed. We were so set on leaving tomorrow! Who knows, though, the doctors may let us leave and just have us come back every day in order to check on his cyclosporin levels. We will find out tomorrow!
Friday, November 23, 2012
Oral Meds Suck
White Blood Count - 3320 cells/microliter
Absolute Neutrophil Count - 1380 cells/microliter
Segmented neutrophils - 27.5%
Band Neutrophils - 14.2%
Lymphocytes - 16.6%
Monocytes - 38.3%
Eosinophils - 1.7%
Basophils - 1.7%
Metaphils - 0%
Myeloblast - 0%
Today was the last day of the ribavirin breathing treatments! Yay! We no longer have to put Cael in the box for 2 hours at a time, or wake him up when it finishes at 11:00 PM and starts at 5:00 AM. And we don't have to worry about him waking up in the middle of it and crying, and not be able to pick him up. We are so happy it is done!
They have also started to switch his medications from IV to oral. That isn't going very well. They only switched 2 medications so far, and Cael HATES it. We gave him the first one (which was less than 1mL) and he immediately threw it up. Then we gave the second, which he kept down. They reordered the first one, and when we gave it again, he threw it up again in less than 5 minutes. Now they are going to try giving him Ativan first to help with the nausea. He is also asleep now, so I don't really know what to expect. If he does keep it down, we won't know if it is because he got the Ativan or if it is because we gave it to him while he was sleeping.
Tomorrow, they plan to switch over more medications to oral. However, if he is throwing these up, I don't know what they will do. I also don't know what this will affect the plan for us to leave on Monday. The nurse just said if he still won't keep down this medicine after getting the Ativan, then he probably isn't ready for oral meds. If that is the case, I'm sure we won't be leaving Monday.
He also didn't want to swallow the meds. He just holds them in his mouth. Giving him his pacifier sometimes helps, but I'm not sure that will continue to work later. Anyone know any good tricks to getting their babies to take oral medicines? Mixing with formula won't work since he doesn't consistently drink that. So we don't want to take the chance that he won't drink and therefore not get his meds. In the past, I have tried putting the medicine at the way back of his mouth, but that sometimes makes him gag and throw up anyway.
I tried to give him mashed potatoes today. He took a tiny bite, then just held it in his mouth. So instead I just let him play with it. He had a great time making a big mess of it. But then he threw up......I swear it was the tiniest of bites! This does not make me feel good about trying to give him solids again. Any time I try to give him applesauce or baby food, he just holds it in his mouth and cries. And today, with the choking, I am so nervous about giving him anything other than formula or water. The occupational therapist thinks we should just skip all the stage 1 and 2 baby foods and go right to the 3. I definitely think that is a bad idea now. And we can forget the cake on his birthday! There is no way I am going to risk that.
I don't know what will happen tomorrow with the meds, but I'm hoping it is better than tonight.
Absolute Neutrophil Count - 1380 cells/microliter
Segmented neutrophils - 27.5%
Band Neutrophils - 14.2%
Lymphocytes - 16.6%
Monocytes - 38.3%
Eosinophils - 1.7%
Basophils - 1.7%
Metaphils - 0%
Myeloblast - 0%
Today was the last day of the ribavirin breathing treatments! Yay! We no longer have to put Cael in the box for 2 hours at a time, or wake him up when it finishes at 11:00 PM and starts at 5:00 AM. And we don't have to worry about him waking up in the middle of it and crying, and not be able to pick him up. We are so happy it is done!
They have also started to switch his medications from IV to oral. That isn't going very well. They only switched 2 medications so far, and Cael HATES it. We gave him the first one (which was less than 1mL) and he immediately threw it up. Then we gave the second, which he kept down. They reordered the first one, and when we gave it again, he threw it up again in less than 5 minutes. Now they are going to try giving him Ativan first to help with the nausea. He is also asleep now, so I don't really know what to expect. If he does keep it down, we won't know if it is because he got the Ativan or if it is because we gave it to him while he was sleeping.
Tomorrow, they plan to switch over more medications to oral. However, if he is throwing these up, I don't know what they will do. I also don't know what this will affect the plan for us to leave on Monday. The nurse just said if he still won't keep down this medicine after getting the Ativan, then he probably isn't ready for oral meds. If that is the case, I'm sure we won't be leaving Monday.
He also didn't want to swallow the meds. He just holds them in his mouth. Giving him his pacifier sometimes helps, but I'm not sure that will continue to work later. Anyone know any good tricks to getting their babies to take oral medicines? Mixing with formula won't work since he doesn't consistently drink that. So we don't want to take the chance that he won't drink and therefore not get his meds. In the past, I have tried putting the medicine at the way back of his mouth, but that sometimes makes him gag and throw up anyway.
I tried to give him mashed potatoes today. He took a tiny bite, then just held it in his mouth. So instead I just let him play with it. He had a great time making a big mess of it. But then he threw up......I swear it was the tiniest of bites! This does not make me feel good about trying to give him solids again. Any time I try to give him applesauce or baby food, he just holds it in his mouth and cries. And today, with the choking, I am so nervous about giving him anything other than formula or water. The occupational therapist thinks we should just skip all the stage 1 and 2 baby foods and go right to the 3. I definitely think that is a bad idea now. And we can forget the cake on his birthday! There is no way I am going to risk that.
I don't know what will happen tomorrow with the meds, but I'm hoping it is better than tonight.
Thursday, November 22, 2012
Happy Thanksgiving!
White Blood Count - 2910 cells/microliterAbsolute Neutrophil Count - 1180 cells/microliter
Segmented neutrophils - 33.9%
Band Neutrophils - 6.8%
Lymphocytes - 13.6%
Monocytes - 37.3%
Eosinophils - 1.7%
Basophils - 0%
Metaphils - 0%
Myeloblast - 0%
What a great Thanksgiving! Cael's cell count has rocketed up and we got some great news today. We will be able to leave the hospital on Monday, as long as nothing drastically changes for the worse. We will be required to stay in the Houston area for another 2 months or so while we go to clinic. I think tomorrow we will be talking with the nurses about what to expect when we leave. I guess we will get a lot of literature on things to do and not do, and we will go over all the "rules".
Tomorrow we will start switching over his medications from IV to oral. They want to make sure he will take and keep down his oral meds before he leaves the hospital. They will also stop the GCSF (a med that helps the cells multiply) on Saturday and make sure his ANC stays up. Then the ribavirin breathing treatment will be stopped on Thursday. Yay! As long as everything stays good, we will be packing up and leaving on Monday. I am beyond excited to get out of the hospital. We are certainly counting down the minutes at this point.We had several visitors today, and they all brought food! We are going to be eating turkey until we leave on Monday. Adam's aunt and uncle came in the morning, during which time Cael was very calm and quiet. He just wanted to be held most of the time. But by the time they left, he was being pretty playful. Before they came he was a bundle of energy. I got a few cute pics before he decided to be too un-smiley. My boss, Ross, from Austin also came by in the evening. Cael was pretty good for him. Even though he hasn't seen him much, he was very playful and unshy around him. I'm glad to see him like that.
I have been working on a few little projects while Cael naps and after he goes to bed. Adam's aunt got me some yarn, knitting needles, crochet hooks, and a book of how to knit. Between the book and You Tube, I figured out how to knit a scarf and crochet a hat for Cael. Here are my final products. They took me WAY too long to finish, but that is because I am a bit of a perfectionist. I think I redid the scarf at least 4 times before I was happy with the width and the way it was looking. I would make about 10"-12" then undo the whole thing and start over. The hat wasn't quite so bad. I think I only had to undo that to change the size 2 or 3 times. lol. I think the scarf and hat turned out very nicely. Cael doesn't seem too sure about them though. He just likes to pull the hat off and yank on the scarf. :)Wednesday, November 21, 2012
November 21
White Blood Count - 2200 cells/microliter
Absolute Neutrophil Count - 430 cells/microliter
Segmented neutrophils - 17.1%
Band Neutrophils - 2.6%
Lymphocytes - 24.8%
Monocytes - 53.8%
Eosinophils - 0.8%
Basophils - 0.9%
Metaphils - 0%
Myeloblast - 0%
So Cael's neutrophil count isn't going up quite as quickly as I had expected, but that's ok. His level is still going up, and that is what matters. I think tomorrow he will definitely be over 500.
I was a bit mistaken yesterday when I said he was definitely engrafted. Apparently he was definitely engraftING. They still need the ANC to be over 500 for 3 days in a row to consider him engrafted. Apparently that is enough for most patients to even go home. With Cael, though, they want his count to be over 2500 before sending him out of the hospital. I guess that could always change, but that is what we are working with at this point. I know that is because he has the paraflu still and they want to be very sure that he will be okay once he leaves here, and not need him to be readmitted to the hospital for that.
Last night was pretty bad again. He even was freaking out a bit when the night nurse first came in. He wanted nothing to do with her. And he woke up twice last night, which is less than the previous night, but he was awake from 12:00 AM - 12:45 AM and 3:30 AM - 5:00 AM. Again, he was fine as long as I was right next to him, touching him. As soon as I moved away he would cry. I don't think I am going to get used to that, but I know to expect it at this point. He also woke up at 7:00 AM and skipped his morning nap. Adam is the champ at sleeping through things, so I was up with him both times. We both got up at 7:00 though, as we do every morning. At least we won't be used to sleeping in too much when it is time to return to real life. However, I don't know what I am going to do when I can't take an hour nap in the afternoon!
Happy Thanksgiving tomorrow to my US readers. We will have some company tomorrow, which will be nice. Adam's aunt and uncle will be visiting in the morning, and my boss is stopping by in the evening. It is so nice to get visitors! Plus they are both bringing us some yummy food, so that makes it even better. We are going to be eating so good tomorrow! I can't wait to see them!
Absolute Neutrophil Count - 430 cells/microliter
Segmented neutrophils - 17.1%
Band Neutrophils - 2.6%
Lymphocytes - 24.8%
Monocytes - 53.8%
Eosinophils - 0.8%
Basophils - 0.9%
Metaphils - 0%
Myeloblast - 0%
So Cael's neutrophil count isn't going up quite as quickly as I had expected, but that's ok. His level is still going up, and that is what matters. I think tomorrow he will definitely be over 500.
I was a bit mistaken yesterday when I said he was definitely engrafted. Apparently he was definitely engraftING. They still need the ANC to be over 500 for 3 days in a row to consider him engrafted. Apparently that is enough for most patients to even go home. With Cael, though, they want his count to be over 2500 before sending him out of the hospital. I guess that could always change, but that is what we are working with at this point. I know that is because he has the paraflu still and they want to be very sure that he will be okay once he leaves here, and not need him to be readmitted to the hospital for that.
Last night was pretty bad again. He even was freaking out a bit when the night nurse first came in. He wanted nothing to do with her. And he woke up twice last night, which is less than the previous night, but he was awake from 12:00 AM - 12:45 AM and 3:30 AM - 5:00 AM. Again, he was fine as long as I was right next to him, touching him. As soon as I moved away he would cry. I don't think I am going to get used to that, but I know to expect it at this point. He also woke up at 7:00 AM and skipped his morning nap. Adam is the champ at sleeping through things, so I was up with him both times. We both got up at 7:00 though, as we do every morning. At least we won't be used to sleeping in too much when it is time to return to real life. However, I don't know what I am going to do when I can't take an hour nap in the afternoon!
Happy Thanksgiving tomorrow to my US readers. We will have some company tomorrow, which will be nice. Adam's aunt and uncle will be visiting in the morning, and my boss is stopping by in the evening. It is so nice to get visitors! Plus they are both bringing us some yummy food, so that makes it even better. We are going to be eating so good tomorrow! I can't wait to see them!
Tuesday, November 20, 2012
Engraftment!
White Blood Count - 1390 cells/microliter
Absolute Neutrophil Count - 330 cells/microliter
Segmented neutrophils - 15.3%
Band Neutrophils - 8.5%
Lymphocytes - 22%
Monocytes - 49.2%
Eosinophils - 3.4%
Basophils - 0.8%
Metaphils - 0%
Myeloblast - 0%
Dr. Krance, Cael's primary transplant doctor, just stopped by to let us know that the test they did last week, when he had about 1000 while blood cells/microliter, and 120 neutrophil cells/microliter, showed that he had about 85% donor white cells and his neutrophils were about 75% donor cells. Apparently that is good news. I don't really know how he could only have 85% donor cells. I thought the chemo was supposed to entirely wipe out his existing immune system. I guess some of his existing immune system wasn't wiped out, but seems to be existing with the new cells just fine. They will continue to do the same test several times as he comes back into clinic. However, Dr. Krance says that Cael is definitely engrafted!
We don't know about the T cell count, or their function just yet, and I'm not sure if we will find that out before we leave the hospital or not. The doctor was very brief in his visit. We will probably get more information tomorrow from the team of doctors we see every day.
Last night was pretty tough. Cael woke up at least 4 times just crying. I would stand up by his bed and put my hand on him and he was fine, but as soon as I sat down, less than 4 feet away, he would start crying again. And this evening, when the nurse came in, he took one look at her and started crying and squirming. I know this is the time for separation anxiety, but really? 4 feet away?? Geesh...he won't know what to do when he isn't the center of attention any more!
During the day he is just fine for the most part. He has a few instances where he is a little fussy, but for the most part he is very happy and playful. I have noticed that he is having some fatigue as well. Before the transplant, if we held him, he would be very alert and head up, but now after a little bit of being held, he puts his head on my shoulder as though he is tired, even if he just woke up from a nap. That seems to be a typical thing to happen. I've been trying to find some information about what to expect in the time after transplant, as far as when it is safe to take him in public, when he will be able to be around other children, and when we can stop being super worried about everything. It is surprisingly hard to find any information! Like I said yesterday, the doctors haven't told us much yet. I asked today, and they said we will talk about it when he is closer to being discharged.
I'm hoping for a better night tonight. I don't know how many more nights I can handle getting up every few hours with a crying baby!
Absolute Neutrophil Count - 330 cells/microliter
Segmented neutrophils - 15.3%
Band Neutrophils - 8.5%
Lymphocytes - 22%
Monocytes - 49.2%
Eosinophils - 3.4%
Basophils - 0.8%
Metaphils - 0%
Myeloblast - 0%
Dr. Krance, Cael's primary transplant doctor, just stopped by to let us know that the test they did last week, when he had about 1000 while blood cells/microliter, and 120 neutrophil cells/microliter, showed that he had about 85% donor white cells and his neutrophils were about 75% donor cells. Apparently that is good news. I don't really know how he could only have 85% donor cells. I thought the chemo was supposed to entirely wipe out his existing immune system. I guess some of his existing immune system wasn't wiped out, but seems to be existing with the new cells just fine. They will continue to do the same test several times as he comes back into clinic. However, Dr. Krance says that Cael is definitely engrafted!
We don't know about the T cell count, or their function just yet, and I'm not sure if we will find that out before we leave the hospital or not. The doctor was very brief in his visit. We will probably get more information tomorrow from the team of doctors we see every day.
Last night was pretty tough. Cael woke up at least 4 times just crying. I would stand up by his bed and put my hand on him and he was fine, but as soon as I sat down, less than 4 feet away, he would start crying again. And this evening, when the nurse came in, he took one look at her and started crying and squirming. I know this is the time for separation anxiety, but really? 4 feet away?? Geesh...he won't know what to do when he isn't the center of attention any more!
During the day he is just fine for the most part. He has a few instances where he is a little fussy, but for the most part he is very happy and playful. I have noticed that he is having some fatigue as well. Before the transplant, if we held him, he would be very alert and head up, but now after a little bit of being held, he puts his head on my shoulder as though he is tired, even if he just woke up from a nap. That seems to be a typical thing to happen. I've been trying to find some information about what to expect in the time after transplant, as far as when it is safe to take him in public, when he will be able to be around other children, and when we can stop being super worried about everything. It is surprisingly hard to find any information! Like I said yesterday, the doctors haven't told us much yet. I asked today, and they said we will talk about it when he is closer to being discharged.
I'm hoping for a better night tonight. I don't know how many more nights I can handle getting up every few hours with a crying baby!
Monday, November 19, 2012
Rambling of an *Almost* Sane Parent
White Blood Count - 1240 cells/microliter
Absolute Neutrophil Count - 250 cells/microliter
Segmented neutrophils - 18%
Band Neutrophils - 2%
Lymphocytes - 22%
Monocytes - 52%
Eosinophils - 6%
Basophils - 0%
Metaphils - 0%
Myeloblast - 0%
ANC is at 250! It is increasing exponentially at this point, so every day it is doubling. So tomorrow, Cael will probably be at 500, then 2500 by Friday. It has all started to move along very quickly now.
Today, they took him off the Ativan (anti nausea), and have made it available as needed. They also reduced the xopenex (used to open his airways in his lungs - used a lot by asthmatics) to every 8 hours, instead of every 4 hours. Soon, they will decrease the lasik (diuretic) from every 6 hours to every 8 hours. That will be taken away once he is taking most of his medicines by mouth. They want that to happen before he leaves the hospital. Then when we come back to the clinic, they will give him his other medications that he needs. They tell us he will start by coming into clinic about 3-4 times each week for about half a day each time. It seems we will still be pretty busy after we leave the hospital.
It's looking like it will be just a couple more weeks until he gets to leave. Maybe even less than that. Probably some time next week we will get to leave! (Assuming nothing drastically changes between now and then) I'm a little nervous about leaving. He won't have the constant monitoring to know if something isn't quite right, and we won't have the doctors and nurses around to help in those instances. It seems that things are going remarkably well, but his health is the absolute number one concern for us when we leave here. I'm going to be pretty cautious about everything for quite some time. I'm especially nervous about it being the winter time and the sick season. I just don't want to come into contact with someone who is sick, then bring it home and get Cael sick. I think the first 100 days after transplant are the most critical, which is why they want us to stay in Houston for the first 100 days. After that, I don't know how things will change. We haven't had that conversation with the doctors yet. From the few families with SCID children that I have spoken to, it sounds like it will be a long time before things are really normal again. At this point, I just plan to take everything one day at a time and deal with any new things as they arise. I have no set plans at this point.
**It took me a very long time to write this post. When I started writing, I really didn't think I was worried about leaving, but as I got going, I realized that we really will be leaving the hospital soon, and that things are going to be very different. Hospitals are so clean and precautions are taken by all the workers to make sure he is safe. When we leave, it will be completely up to us to keep him safe. I don't think anyone in our lives really understand the enormity of what is happening. We won't just be leaving, then waiting to go back to Austin, then our lives are just *bam*, back to normal. To this point, I have been VERY optimistic about everything. I think I have been so much so to a fault. Please do not mistake my optimism for thinking that everything is A-OK. Things are going well, yes, but that doesn't mean there aren't major concerns. Our lives are forever changed due to this. We will have to continue to be careful for quite a long time. We will have hospital visits very often, then slowly taper off. At the longest, we will still need to take Cael to the hospital every single year for check ups. Even then, there are going to be concerns about his cell counts forever. We don't know at this point if he will need continued IVIG, or if his immune system will be truly re-established.
We have spent so much time counting down until we get to leave and go home that we haven't put a whole lot of thought into what will happen once we get to go home. My parents have plans to come stay with us for a while in order to help me get back to work and keep Cael at home. But they can't stay forever, and I don't want them to. (No offense Mom and Dad). I spent a lot of time in my life preparing for a life on my own, with my family, and I don't know how well I will do going back to living with my parents. lol (Who would??) We are going to have to figure out some way to adjust our lives to our new circumstances and make the best of everything.
That was really ALL over the place. Sorry about that. I sometimes have a hard time collecting all my thoughts, and then I just end up rambling and repeating myself. It might also be that I am going just a little crazy after being in a small hospital room for the past 4 months.
Sunday, November 18, 2012
ANC is UP!
White Blood Count - 770 cells/microliter
Absolute Neutrophil Count - 140 cells/microliter
Segmented neutrophils - 12.8%
Band Neutrophils - 5.8%
Lymphocytes - 31.4%
Monocytes - 33.7%
Eosinophils - 12.8%
Basophils - 1.2%
Metaphils - 2.3%
Myeloblast - 0%
Cael's neutrophil counts went way up since yesterday! This is great news. The doctor we spoke to today thinks that the counts should start to really take off from here. Again, we aren't going to expect too much, but he thinks Cael's ANC should be at 2500 by the end of the week. I don't know what that means for his discharge, but it can only be a good thing!
Cael got to see his great grandmother and her friend today. He was such a charmer for them, as usual. He finally seems to be getting back to his normal self. The only thing that still is off is his eating. The doctor today said that once his counts come back he should start to eat better and better. It will be such a change to have him eating like a normal baby again. Since he has been either not eating or only taking formula for the past few months, we are going to have to start all over with the solids again. We used to make our own baby food, but I don't think we can do that for awhile after we leave here. Something about the bacteria on the fruits and veggies. So we are going to have to do jarred baby foods until he can work up to normal finger foods.
His day was really good again today. I don't really have much else to say. Each day is getting less eventful, which is good, but it makes it so I don't have much to say on here! I guess no news is good news though. So if I don't update every day, assume the best!
Absolute Neutrophil Count - 140 cells/microliter
Segmented neutrophils - 12.8%
Band Neutrophils - 5.8%
Lymphocytes - 31.4%
Monocytes - 33.7%
Eosinophils - 12.8%
Basophils - 1.2%
Metaphils - 2.3%
Myeloblast - 0%
Cael's neutrophil counts went way up since yesterday! This is great news. The doctor we spoke to today thinks that the counts should start to really take off from here. Again, we aren't going to expect too much, but he thinks Cael's ANC should be at 2500 by the end of the week. I don't know what that means for his discharge, but it can only be a good thing!
Cael got to see his great grandmother and her friend today. He was such a charmer for them, as usual. He finally seems to be getting back to his normal self. The only thing that still is off is his eating. The doctor today said that once his counts come back he should start to eat better and better. It will be such a change to have him eating like a normal baby again. Since he has been either not eating or only taking formula for the past few months, we are going to have to start all over with the solids again. We used to make our own baby food, but I don't think we can do that for awhile after we leave here. Something about the bacteria on the fruits and veggies. So we are going to have to do jarred baby foods until he can work up to normal finger foods.
His day was really good again today. I don't really have much else to say. Each day is getting less eventful, which is good, but it makes it so I don't have much to say on here! I guess no news is good news though. So if I don't update every day, assume the best!
Saturday, November 17, 2012
Good Day, but Low Cell Counts
White Blood Count - 750 cells/microliter
Absolute Neutrophil Count - 50 cells/microliter
Segmented neutrophils - 6.2%
Band Neutrophils - 0%
Lymphocytes - 39.5%
Monocytes - 48.2%
Eosinophils - 4.9%
Basophils - 1.2%
Metaphils - 0%
Myeloblast - 0%
Yesterday and today were both really good for Cael. He only threw up once yesterday and today, right after his first bottle of the day. Otherwise, he kept everything down. That is a definite improvement.
He also seems to be getting stronger. That might just be that he is feeling better, but he is much more active. Today he was working on pulling himself up to a stand. He is totally bypassing the crawling thing. He can't even get himself from a sit to a laying position without just flopping backward. But he CAN pull himself up to a stand from a sit with a little bit of help. I really can't wait to get him around furniture. I'm so sure he is going to be pulling himself up all the time.
Unfortunately, his neutrophil count went down some more today. The doctors don't seem too concerned just yet. They said with cord blood transplants, the cells take longer to come back, so that's what they think is happening. On the plus side, his white cell count and monocyte counts went up a lot, so he still has cells multiplying, but the neutrophils just aren't being as quick. I don't really know the difference in all the cell types, but I know the neutrophils are the really important ones that he needs before he has his immune system restored.
Two weeks ago, a doctor told me that she thought we might be out of here in 2 weeks. Obviously that was WAY wrong. I didn't expect us to be out by now, and it doesn't look like we will be leaving anytime soon. The doctors haven't said anything about when he might be able to leave, so we don't really know what to expect. At this point, I'm just hoping we will be out of here by Christmas!
Absolute Neutrophil Count - 50 cells/microliter
Segmented neutrophils - 6.2%
Band Neutrophils - 0%
Lymphocytes - 39.5%
Monocytes - 48.2%
Eosinophils - 4.9%
Basophils - 1.2%
Metaphils - 0%
Myeloblast - 0%
Yesterday and today were both really good for Cael. He only threw up once yesterday and today, right after his first bottle of the day. Otherwise, he kept everything down. That is a definite improvement.
He also seems to be getting stronger. That might just be that he is feeling better, but he is much more active. Today he was working on pulling himself up to a stand. He is totally bypassing the crawling thing. He can't even get himself from a sit to a laying position without just flopping backward. But he CAN pull himself up to a stand from a sit with a little bit of help. I really can't wait to get him around furniture. I'm so sure he is going to be pulling himself up all the time.
Unfortunately, his neutrophil count went down some more today. The doctors don't seem too concerned just yet. They said with cord blood transplants, the cells take longer to come back, so that's what they think is happening. On the plus side, his white cell count and monocyte counts went up a lot, so he still has cells multiplying, but the neutrophils just aren't being as quick. I don't really know the difference in all the cell types, but I know the neutrophils are the really important ones that he needs before he has his immune system restored.
Two weeks ago, a doctor told me that she thought we might be out of here in 2 weeks. Obviously that was WAY wrong. I didn't expect us to be out by now, and it doesn't look like we will be leaving anytime soon. The doctors haven't said anything about when he might be able to leave, so we don't really know what to expect. At this point, I'm just hoping we will be out of here by Christmas!
Thursday, November 15, 2012
Good Day
White Blood Count - 410 cells/microliter
Absolute Neutrophil Count - 80 cells/microliter
Segmented neutrophils - 15.9%
Band Neutrophils - 3.3%
Lymphocytes - 41.7%
Monocytes - 34.2%
Eosinophils - 3.3%
Basophils - 0.8%
Metaphils - 0.8%
Myeloblast - 0%
Absolute Neutrophil Count - 80 cells/microliter
Segmented neutrophils - 15.9%
Band Neutrophils - 3.3%
Lymphocytes - 41.7%
Monocytes - 34.2%
Eosinophils - 3.3%
Basophils - 0.8%
Metaphils - 0.8%
Myeloblast - 0%
Today was another good day. Cael only threw up once, right after his first bottle of pedialyte. Then he took 3 more small bottles of formula through the day. He took about 2 oz (60 mL) for 2 bottles, but only 1 oz (30 mL) for the last. He just didn't seem interested in the bottle. It took some convincing for the first 2 bottles, then the last one, he just wouldn't take any more than 1 oz. I don't really know what to think of that right now. I know he needs to be taking at least half of his daily nutrition by mouth. That would be about 15-20 ounces (450-600 mL). Today he took about 7 ounces, but threw up 2. We still have some time though. Things could change drastically and time.
Physical therapy was pretty good today. He didn't do any rolling or crawling yet, but you could tell he was really trying hard. He kept getting his legs under him, but he wouldn't lift his chest up. Then he would lift his chest, but kept his legs down. But he did keep trying to get those legs under him. I just know that he will be crawling when he starts to feel really good and is out of here.
Cael LOVES the iPad. He knows that if he touches it, something will happen. We have a few apps especially for him, including a piano app by fisher price. He knows the beginning tune that plays when we open that app, and he gets so excited. Then he knows to smack the screen to get sounds out of the piano. What a smart little cookie! He even "dances" a little bit while he is playing it.
Wednesday, November 14, 2012
IV Pole
White Blood Count - 420 cells/microliter
Absolute Neutrophil Count - 110 cells/microliter
Segmented neutrophils - 24.8%
Band Neutrophils - 0.9%
Lymphocytes - 46.7%
Monocytes - 23.8%
Eosinophils - 2.9%
Basophils - 0%
Metaphils - 0.9%
Myeloblast - 0%
Today was a great day. Cael slept through his ribavirin breathing treatment this morning (Yay!), then was in a very pleasant mood all day. He didn't even need the oxygen last night while he slept, and tonight looks like he won't need it either. I don't know if that is an indication of his lungs doing better, but I know he isn't doing any worse.
He still is throwing up. He did it 3 times within 30 minutes after having some formula today. The doctors were hoping to stop the Ativan, which is for the nausea. However, I don't think he is quite ready to stop it. I'm not sure if it is helping a lot, but I can just imagine how much worse it might be if he wasn't getting the Ativan.
They did stop one medicine today. They stopped the Dopamine, which was being used to help his kidneys. I guess they think that he is doing well enough that they can stop that one. From here, it sounds like they will slowly be stopping or at least reducing the number of medications he will be receiving. Here is a picture of his IV stand. He usually has all 5 of the syringe pumps (2 at top and 3 at bottom) going with different medicines, and one of the bag pumps (3 in middle, side by side) going. Sometimes 2 of the bag pumps will be going if he is receiving platelets or blood. He also has a morphine pump at the very top of the stand. So at any given time, there were at least 7 lines going into his body. 7!! Today they turned off the very bottom syringe pump, so now he only has 6. Every pump has to be plugged in, or the battery will die, so we are kind of stuck with him in that one place. At least the bed is big enough now that we can sit up there any play with him. We can unplug everything for about 2-3 hours before the batteries die, but we aren't allowed to leave the room, so for the most part we either have him in the bed, or just on the floor in front of the pole (on mats, of course).
This evening, we enjoyed some books and some fun music and dancing. Usually, when Cael hears music he starts to bounce and sway. It takes him a minute, but almost every time he will "dance" to the music. Sometimes when we sing/say "dance and dance and dance and dance and dance", he will even start to bounce around. I think he really likes music, and is going to really enjoy dancing when he is a little bigger and able to stand and walk.
Absolute Neutrophil Count - 110 cells/microliter
Segmented neutrophils - 24.8%
Band Neutrophils - 0.9%
Lymphocytes - 46.7%
Monocytes - 23.8%
Eosinophils - 2.9%
Basophils - 0%
Metaphils - 0.9%
Myeloblast - 0%
Today was a great day. Cael slept through his ribavirin breathing treatment this morning (Yay!), then was in a very pleasant mood all day. He didn't even need the oxygen last night while he slept, and tonight looks like he won't need it either. I don't know if that is an indication of his lungs doing better, but I know he isn't doing any worse.He still is throwing up. He did it 3 times within 30 minutes after having some formula today. The doctors were hoping to stop the Ativan, which is for the nausea. However, I don't think he is quite ready to stop it. I'm not sure if it is helping a lot, but I can just imagine how much worse it might be if he wasn't getting the Ativan.
They did stop one medicine today. They stopped the Dopamine, which was being used to help his kidneys. I guess they think that he is doing well enough that they can stop that one. From here, it sounds like they will slowly be stopping or at least reducing the number of medications he will be receiving. Here is a picture of his IV stand. He usually has all 5 of the syringe pumps (2 at top and 3 at bottom) going with different medicines, and one of the bag pumps (3 in middle, side by side) going. Sometimes 2 of the bag pumps will be going if he is receiving platelets or blood. He also has a morphine pump at the very top of the stand. So at any given time, there were at least 7 lines going into his body. 7!! Today they turned off the very bottom syringe pump, so now he only has 6. Every pump has to be plugged in, or the battery will die, so we are kind of stuck with him in that one place. At least the bed is big enough now that we can sit up there any play with him. We can unplug everything for about 2-3 hours before the batteries die, but we aren't allowed to leave the room, so for the most part we either have him in the bed, or just on the floor in front of the pole (on mats, of course).
This evening, we enjoyed some books and some fun music and dancing. Usually, when Cael hears music he starts to bounce and sway. It takes him a minute, but almost every time he will "dance" to the music. Sometimes when we sing/say "dance and dance and dance and dance and dance", he will even start to bounce around. I think he really likes music, and is going to really enjoy dancing when he is a little bigger and able to stand and walk.
Tuesday, November 13, 2012
Pretty Good Day, Overall
Absolute Neutrophil Count - 70 cells/microliter
Segmented neutrophils - 30.1%
Band Neutrophils - 1.4%
Lymphocytes - 35.6%
Monocytes - 20.5%
Eosinophils - 4.1%
Basophils - 1.4%
Metaphils - 1.4%
Myeloblast - 1.4%
Cael actually had a descent day today. That is, if you don't count the very beginning and the very end. He cried the entire time in the breathing treatment this morning, and he just fell back asleep in his treatment. I have given up hope that he will get used to these treatments and sleep through them all. We will just have to deal with it all until he gets to stop them. They want him to engraft before they even think about stopping the treatments. One doctor was thinking that he might be considered engrafted sometime next week.
The rest of the day was pretty good. He was so happy, like our normal baby. At one point, he was about to fall asleep, but suddenly got a second wind of energy, and just sat there smiling and having fun. He would raise his shoulders up and get a huge grin on his face and just tense up his whole body. It was so stinkin' cute! He also had fun playing with Adam for awhile. As you can see, he was having a lot of fun. You can even see his top two teeth! He has 2 on top and 2 on bottom, now. I think there might even be 2 more coming in on the bottom. Of course that doesn't help his discomfort right now. The schedule is working very well for his afternoon nap. He sleeps so well through that one. Then he gets his bath (more of a wipe down with wash cloths...I guess a sponge bath?) and falls asleep around 7:00 - 7:15. It seems kind of early to me, but that is just when he wants to sleep. They are supposed to weigh at bed time, and he is always asleep at 8:00 when they come in. They always say they can wait until he wakes up again, and are surprised when I say that he won't wake up again until morning. Is 7:00 really early for bedtime? If he didn't have the breathing treatments, he would probably sleep from 7:00 pm - 7:00 am. I don't know if he is just a really good sleeper, or if he sleeps too much. Oh well...I'm just going to be happy that he sleeps through the night still. Especially with them coming in every 4 hours to take his temp and blood pressure. I think he still hasn't gotten used to the daylight savings. So 7:00 pm probably still seems later to him. I can't imagine many babies who deal well with the time change.
Hoping for tomorrow to be another day like today. I missed my happy baby, and I loved seeing him again today.
Monday, November 12, 2012
We just keep changing his schedule.
I don't have the new numbers for today. They never got the labs to me. I think the lab was slow today and didn't get back some of the numbers. I'm not even sure if they have them now.
We have changed up Cael's schedule one more time. We put his breathing treatments back to the original schedule. This is happening because they were 2 1/2 hours late with his afternoon breathing treatment. 2 1/2 hours! Really?! How does that even happen? Argh...so frustrating. Anyways, we are now back on the original schedule that worked out so well for us before. Hopefully now his napping schedule will even out again. We were having such a hard time trying to tell him when to nap, and having to wake him up from naps. I hated doing that. Now, he will hopefully go back to his normal schedule, which was so much more natural for him.
He seemed to be doing pretty well this afternoon. In the morning he was very irritable, as he is most mornings as of late, but by the time his ribavirin was done at 5:00, he was pretty happy. He was working on pulling himself up to a standing position from sitting. He grabs my fingers and pulls himself up pretty well. Once he is able to use furniture, I think he will get to standing on his own pretty well. Now if he would just get himself from laying down up to a sitting position...He still needs some help on that one.
I know it is so trivial at this point, but I am so bummed not to be home to play Call of Duty tomorrow! We pre-ordered the game way back in July, before going to the hospital, and it comes out tonight at midnight. Not that I would have gone to get it at midnight (I do usually work for a living), but I so would have gotten it tomorrow so Adam and I could play in at night. My favorite game is Call of Duty Black Ops 1, so I was so excited for Black Ops 2 to come out. Guess I have one more thing to look forward to once we leave the hospital. :)
We have changed up Cael's schedule one more time. We put his breathing treatments back to the original schedule. This is happening because they were 2 1/2 hours late with his afternoon breathing treatment. 2 1/2 hours! Really?! How does that even happen? Argh...so frustrating. Anyways, we are now back on the original schedule that worked out so well for us before. Hopefully now his napping schedule will even out again. We were having such a hard time trying to tell him when to nap, and having to wake him up from naps. I hated doing that. Now, he will hopefully go back to his normal schedule, which was so much more natural for him.
He seemed to be doing pretty well this afternoon. In the morning he was very irritable, as he is most mornings as of late, but by the time his ribavirin was done at 5:00, he was pretty happy. He was working on pulling himself up to a standing position from sitting. He grabs my fingers and pulls himself up pretty well. Once he is able to use furniture, I think he will get to standing on his own pretty well. Now if he would just get himself from laying down up to a sitting position...He still needs some help on that one.
I know it is so trivial at this point, but I am so bummed not to be home to play Call of Duty tomorrow! We pre-ordered the game way back in July, before going to the hospital, and it comes out tonight at midnight. Not that I would have gone to get it at midnight (I do usually work for a living), but I so would have gotten it tomorrow so Adam and I could play in at night. My favorite game is Call of Duty Black Ops 1, so I was so excited for Black Ops 2 to come out. Guess I have one more thing to look forward to once we leave the hospital. :)
Sunday, November 11, 2012
Books!
White Blood Count - 270 cells/microliter
Absolute Neutrophil Count - 80 cells/microliter
Segmented neutrophils - 23.8%
Band Neutrophils - 7.1%
Lymphocytes - 45.2%
Monocytes - 19.1%
Eosinophils - 2.4%
Basophils - 0%
Cael really loves his books! He was about to fall asleep for his nap today, but I was trying to keep him up for just a little longer until his breathing treatment, so I decided to read him a book. While I was reading to him, he started kicking his legs out of excitement and woke up way more than I expected. Then, of course, he didn't want to sleep when I really wanted him to. Isn't that how it always works?
Cael's drinking is about 3 steps forward, 2 steps back. He still really wants to drink, but he is still throwing up about 2/3 of what he is drinking. But he didn't throw up too many times other than after he drank, so I think that is a step in the right direction. I was told today that they will definitely not send us home if he is still throwing up what he is taking in. I kind of figured as much, but hadn't heard anyone say it until now.
Not much else to say about today.
Saturday, November 10, 2012
More cells and terrible breathing treatments
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...
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...
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.
Friday, November 2, 2012
Breathing and Breathing Treatment
We had an eventful night last night, and day today. He ended up back on the oxygen last night due to his oxygen level being down around 91-92. He woke up several times acting very uncomfortable, too. He was kind of whining and moaning a bit, and kicking and flinging his head back and forth. He was off the oxygen once he woke up, though, and was off it all day. I think he was pretty worn out after waking up so much last night because today he napped so well, and he fell asleep very early tonight, at 7:15! He seemed to be breathing much better through the day today, and tonight his oxygen levels are still up pretty high at 97 right now.
He has a bit of a rash on his tummy and his back. One doctor said it might be from him engrafting, but another said it probably wasn't that, but didn't have any better explanation. So I really don't know what it is caused by. It is just some redness and splotchyness. It seems to itch a bit, too. They are getting some topical cream to put on it to see if it helps out at all.
He had a chest X-ray last night and a CT today. The doctor said he thinks it looks a little better than the last one, but will wait until the radiologist analyzes it before he knows for sure.
The doctor is rearranging his breathing treatment schedule. Before it was at 6 AM, 2 PM, and 10 PM. Starting tomorrow it will be at 5 AM, 11 AM, and 5 PM. I have no idea how that is going to work since his napping schedule is currently a nap from 10 AM - 12 PM, then another from 2 PM - 4 PM during his ribavirin. Tomorrow I'm going to have to try and keep him up until 11 AM, which shouldn't be too bad, but the 5 PM - 7PM is going to be tough. I'll have to wake him up after the treatment and try to keep him awake for a couple hours, then let him go back to bed around 9:00 or so. I just don't think that is going to work. I'm not sure why exactly they are changing it, but I'm going to talk with them tomorrow about maybe making the evening one from 7 PM - 9PM so he can just stay asleep after the treatment.
I'm in for a rough day tomorrow with this new schedule, so I should probably go to bed early...not now, of course, it is only 8:45...but soon-ish, I think.
He has a bit of a rash on his tummy and his back. One doctor said it might be from him engrafting, but another said it probably wasn't that, but didn't have any better explanation. So I really don't know what it is caused by. It is just some redness and splotchyness. It seems to itch a bit, too. They are getting some topical cream to put on it to see if it helps out at all.
He had a chest X-ray last night and a CT today. The doctor said he thinks it looks a little better than the last one, but will wait until the radiologist analyzes it before he knows for sure.
The doctor is rearranging his breathing treatment schedule. Before it was at 6 AM, 2 PM, and 10 PM. Starting tomorrow it will be at 5 AM, 11 AM, and 5 PM. I have no idea how that is going to work since his napping schedule is currently a nap from 10 AM - 12 PM, then another from 2 PM - 4 PM during his ribavirin. Tomorrow I'm going to have to try and keep him up until 11 AM, which shouldn't be too bad, but the 5 PM - 7PM is going to be tough. I'll have to wake him up after the treatment and try to keep him awake for a couple hours, then let him go back to bed around 9:00 or so. I just don't think that is going to work. I'm not sure why exactly they are changing it, but I'm going to talk with them tomorrow about maybe making the evening one from 7 PM - 9PM so he can just stay asleep after the treatment.
I'm in for a rough day tomorrow with this new schedule, so I should probably go to bed early...not now, of course, it is only 8:45...but soon-ish, I think.
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