I have started a Facebook page for Cael and his fight against SCID. It will be a place that I will give quick updates, along with links to this blog. I will be adding lots of pictures to it, too. It is just another way for me to keep in touch with everyone who wants to know about Cael and what he is going through.
If you don't have Facebook, don't worry. I will still be using this blog to write my (almost) daily posts, especially when the transplant process is under way.
Please "like" the new Facebook page: www.facebook.com/CaelsLife
Friday, August 31, 2012
Waiting on a transplant date
Apparently the cord blood donor options are the results of the high resolution HLA typing. We were under the assumption that those were from the low resolution, and they needed the high resolution to narrow it down. Instead, those were the narrowed down choices. The doctors keep telling us how fortunate it is to have so many options. So now, since they have so many, they are doing an even more refined comparison of his blood to the donor cords. They have the luxury of being lucky about which one they ultimately choose for his transplant.
Some great news: all transplants that have been done at Texas Children's that used cord blood engrafted well, and all are still engrafted. That means that those who had cord blood used for their transplant have never gone on to have graft vs host disease later in life. That isn't to say that they didn't have any issues at first. I don't know if they did or not, but the doctor specifically said that all cord blood transplants are still engrafted now.
Now we are just waiting on Dr. Krance to decide which cord blood is going to be used, then give us a date for the transplant. Once that is set, they will be able to determine when his chemotherapy will start. Dr. Hanson is asking him every day when he will have more information. I think she is starting to annoy him at this point. But it's nice to know she is trying to get it all moving as quickly as possible for us. I like having proactive doctors working on Cael.
Some great news: all transplants that have been done at Texas Children's that used cord blood engrafted well, and all are still engrafted. That means that those who had cord blood used for their transplant have never gone on to have graft vs host disease later in life. That isn't to say that they didn't have any issues at first. I don't know if they did or not, but the doctor specifically said that all cord blood transplants are still engrafted now.
Now we are just waiting on Dr. Krance to decide which cord blood is going to be used, then give us a date for the transplant. Once that is set, they will be able to determine when his chemotherapy will start. Dr. Hanson is asking him every day when he will have more information. I think she is starting to annoy him at this point. But it's nice to know she is trying to get it all moving as quickly as possible for us. I like having proactive doctors working on Cael.
Wednesday, August 29, 2012
Busy day and a new illness
Today was my third day working at the Houston office. I'm surprised by how fast the time goes by at work. I'm only working 7 hours or so, but it seems to just fly by. I guess it's because I had something that needed to be done and only a set amount of time to do it. Whatever the reason, I really like when the time goes by quickly. I felt quite productive today.
Adam had a very busy day at the hospital, too. They did an EKG, an echocardiogram, and a nuclear kidney test. The neurologist was supposed to come by today, too, but decided not to since it was so busy in here. They were supposed to spread all of ese ings out over the next several days, but someone thought they would be helpful and get it all done at once. Well that caused quite a bit of craziness.
For the nuclear kidney test, they injected Cael with some sort of solution, then drew blood every hour for 3 hours. They will test the blood to make sure his kidneys are filtering his blood correctly. While that was going on, the echo was being done. The echo took an hour, and Adam had to try and hold Cael still the whole time. And the nurses were trying to draw blood during that time too. Oh, and then Cael needed a diaper change in the middle of all that. Then the phone rang, and the neurologist was asking if it was a good time to come see Cael. Whew! A whole lot was happening at once.
Luckily all of Adam's hair was still on his head when I returned. He hadn't pulled it all out.
We haven't heard any results from any of the tests yet. I imagine we will find out tomorrow about a few of them.
Today was a rough day for Cael, even aside from all the tests. He has been having really loose stools all day. 8 times, in fact. (sorry...too much information. I know) It is caused by something called clostridium difficile (c diff). Because he has been on antibiotics for awhile, those antibiotics have killed a lot of the good bacteria that was in his body. This left room for the c diff to spread and cause problems.
The doctors make it sound like it isn't too big of a deal, but when I looked it up on mayo clinic, it sounds serious. It can cause symptoms ranging from diarrhea to life threatening inflammation of the colon. It is another one of those illnesses that is much worse for someone who has an immune deficiency like Cael does.
They started him on flagyl a couple days ago, but it hasn't helped. In fact he has had more poos today than the past few. If he hasn't gotten better in the next day or so, they are going to switch him over to another medicine called vancomycin. That drug, however, requires a special permission from the pharmacist to use. I guess there is a shortage of that particular drug or something.
Because of the diarrhea, he hasn't been eating particularly well today either. Also, they have started m on IV fluids to ensure he doesn't become dehydrated.
What amazes me most is that in spite of all this, he is still SO happy. He had a giggling fit that lasted about 20 minutes this evening. Everything we did made him laugh at us. He even snorted! It was so cute.
Nothing can bring Cael down. He's going to smile through all of it. :)
Adam had a very busy day at the hospital, too. They did an EKG, an echocardiogram, and a nuclear kidney test. The neurologist was supposed to come by today, too, but decided not to since it was so busy in here. They were supposed to spread all of ese ings out over the next several days, but someone thought they would be helpful and get it all done at once. Well that caused quite a bit of craziness.
For the nuclear kidney test, they injected Cael with some sort of solution, then drew blood every hour for 3 hours. They will test the blood to make sure his kidneys are filtering his blood correctly. While that was going on, the echo was being done. The echo took an hour, and Adam had to try and hold Cael still the whole time. And the nurses were trying to draw blood during that time too. Oh, and then Cael needed a diaper change in the middle of all that. Then the phone rang, and the neurologist was asking if it was a good time to come see Cael. Whew! A whole lot was happening at once.
Luckily all of Adam's hair was still on his head when I returned. He hadn't pulled it all out.
We haven't heard any results from any of the tests yet. I imagine we will find out tomorrow about a few of them.
Today was a rough day for Cael, even aside from all the tests. He has been having really loose stools all day. 8 times, in fact. (sorry...too much information. I know) It is caused by something called clostridium difficile (c diff). Because he has been on antibiotics for awhile, those antibiotics have killed a lot of the good bacteria that was in his body. This left room for the c diff to spread and cause problems.
The doctors make it sound like it isn't too big of a deal, but when I looked it up on mayo clinic, it sounds serious. It can cause symptoms ranging from diarrhea to life threatening inflammation of the colon. It is another one of those illnesses that is much worse for someone who has an immune deficiency like Cael does.
They started him on flagyl a couple days ago, but it hasn't helped. In fact he has had more poos today than the past few. If he hasn't gotten better in the next day or so, they are going to switch him over to another medicine called vancomycin. That drug, however, requires a special permission from the pharmacist to use. I guess there is a shortage of that particular drug or something.
Because of the diarrhea, he hasn't been eating particularly well today either. Also, they have started m on IV fluids to ensure he doesn't become dehydrated.
What amazes me most is that in spite of all this, he is still SO happy. He had a giggling fit that lasted about 20 minutes this evening. Everything we did made him laugh at us. He even snorted! It was so cute.
Nothing can bring Cael down. He's going to smile through all of it. :)
Monday, August 27, 2012
Back to work
Nothing new, medically, to report today.
A nurse who watched Cael last week just came by to see him. He is already asleep, though, so she asked us to tell him she stopped by and asked about him. How cute!
I went back to work today for the first time in a month! I immediately asked a really stupid question, and felt like an idiot. Luckily, my co-worker didn't give me a hard time, and let me slide. :)
It is hard to go back to work and try to concentrate on buildings and models when all I want to do is be with Cael. But right now he is doing very well, and there isn't much for me to do except play with him during the day. Once he starts the chemotherapy, I will very likely want to just stay here with him. I can't imagine leaving him when he is in that kind of fragile state. I know Adam is quite capable of taking care of him while I am at work, but I really want to be here with him. I guess that just comes with being a parent.
Sunday, August 26, 2012
August 26
I tend to think of myself as an optimistic person. Through all of this I have always been looking to the next good thing to happen. We have been fortunate to have things go well so far, which makes me hopeful that they will continue to do so.
I suppose because of my optimistic nature, I have never really thought of it in these terms: Cael has a life threatening condition. Several babies die of SCID because they are not diagnosed early, then they end up getting an infection that kills them. Any of the infections that Cael has could be one of those infections that kill a baby who is not diagnosed. The pneumonia he has, PCP, is a deadly pneumonia that only affects those who cannot fight it off. Everyone else in the world will encounter PCP, but their immune system will just fight it off. RSV only affects small children. An adult who encounters it would just get a cold, and most babies will be sick, but get over it in a few weeks to a month or so.
If there is family history of SCID, then a baby can be diagnosed at birth, have a bone marrow transplant before 3 1/2 months, before ever having an infection, and have a 96% survival rate. The older the patient, and the more infections the patient has had, the lesser the odds. The overall survival rate for bone marrow transplants in SCID patients is only 60%-70%.
Cael is not the typical SCID patient. A typical patient will be diagnosed only after being malnourished/having troubles gaining weight, has experienced several bad rashes, and is very sick from an infection that will not go away. Cael is not malnourished, he hasn't had lots of rashes, and he is still energetic and happy. However, Cael has several infections, so in that aspect, he isn't doing so well. Still, Cael has some thing in his favor (good nutrition, not malnourished, no rashes). I am hopeful that the things that are good are going to give him better odds.
We are very optimistic about his transplant. They have several possible matches, and some very experienced doctors working with us. We will continue to be positive and look forward to the next good thing that is happening.
I suppose because of my optimistic nature, I have never really thought of it in these terms: Cael has a life threatening condition. Several babies die of SCID because they are not diagnosed early, then they end up getting an infection that kills them. Any of the infections that Cael has could be one of those infections that kill a baby who is not diagnosed. The pneumonia he has, PCP, is a deadly pneumonia that only affects those who cannot fight it off. Everyone else in the world will encounter PCP, but their immune system will just fight it off. RSV only affects small children. An adult who encounters it would just get a cold, and most babies will be sick, but get over it in a few weeks to a month or so.
If there is family history of SCID, then a baby can be diagnosed at birth, have a bone marrow transplant before 3 1/2 months, before ever having an infection, and have a 96% survival rate. The older the patient, and the more infections the patient has had, the lesser the odds. The overall survival rate for bone marrow transplants in SCID patients is only 60%-70%.
Cael is not the typical SCID patient. A typical patient will be diagnosed only after being malnourished/having troubles gaining weight, has experienced several bad rashes, and is very sick from an infection that will not go away. Cael is not malnourished, he hasn't had lots of rashes, and he is still energetic and happy. However, Cael has several infections, so in that aspect, he isn't doing so well. Still, Cael has some thing in his favor (good nutrition, not malnourished, no rashes). I am hopeful that the things that are good are going to give him better odds.
We are very optimistic about his transplant. They have several possible matches, and some very experienced doctors working with us. We will continue to be positive and look forward to the next good thing that is happening.
Saturday, August 25, 2012
Donor Matches
We spoke with the transplant doctor, Dr. Krance today. He said they are working on the high resolution HLA testing now, and should have those results early this week. Based on the low resolution results, it looks like there are 5 possible cord blood donors in the United States, and another 9 worldwide. This is good news! Cord blood is the best option. It is already ready, requiring not much preparation. Also, it is a better chance of being accepted by Cael. We will find out more about it when they get the high resolution results.
It seems like he is going to be on the ribovirin breathing treatment until he gets the transplant. Same with the bactrim antibiotic. Since he won't be able to get rid of any of the viruses until he has new T cells, I think they want to keep everything at as best as possible until the transplant. They will do another CT scan next Monday. This week they are going to be doing checks on the rest of his organs (heart, kidney, liver). They want to make sure the rest of his body is ready for the transplant as well. They are trying to wean him off the oxygen, but said that may not happen until after the transplant.
So it sounds like they may start his conditioning (chemotherapy) in as soon as 2 weeks or so. Things seem to be finally moving along.
It seems like he is going to be on the ribovirin breathing treatment until he gets the transplant. Same with the bactrim antibiotic. Since he won't be able to get rid of any of the viruses until he has new T cells, I think they want to keep everything at as best as possible until the transplant. They will do another CT scan next Monday. This week they are going to be doing checks on the rest of his organs (heart, kidney, liver). They want to make sure the rest of his body is ready for the transplant as well. They are trying to wean him off the oxygen, but said that may not happen until after the transplant.
So it sounds like they may start his conditioning (chemotherapy) in as soon as 2 weeks or so. Things seem to be finally moving along.
Baby weight roller coaster
Taking Cael's weight every morning has its good side and bad. When we first got to the hospital 4 weeks ago, he was 7.0 kg (15.4 lb). After 2 weeks, his weight hadn't really gone anywhere - he was at 7.1 kg. Then we increased the calories in his formula and fortified the breastmilk to add calories, which helped him up to 7.3 kg by the end of week 3. When we transferred from Dell to Texas Children's, the new doctors wanted me to stop breastfeeding. They thought that maybe the antibodies that were transferred in the breast milk was maybe causing some problems for him. He kept increasing for the first several days. Now for the past 3 days he has been going down again. If I wasn't able to see his weight every single day, I wouldn't ever think his weight was changing at all. So to see it each day is giving me a bit of a complex!
We are trying very hard to keep his weight up. I hate to put so much stress of making him eat, and keeping him plump. Right now he is only in the 10th percentile for his length. Although, to look at him, I swear he looks very healthy and chubby. The nurses and doctors have told us that when the transplant process is happening, the kids usually will stop eating all together. They just feel really crummy and are very weak, so they just have no interest in eating. If that happens, they will have to give him a feeding tube to make sure he is getting his nutrients. I think they can do some through his IV as well.
We were having some troubles getting him to eat for the past few days, but today he seems to be doing much better. I'm hoping it was just a weird phase, or that his nose was plugged up, making it hard for him to eat.
On a similar note, Cael has 2 teeth now! The second one just came in a week or 2 ago. He is chewing on EVERYTHING!
We are trying very hard to keep his weight up. I hate to put so much stress of making him eat, and keeping him plump. Right now he is only in the 10th percentile for his length. Although, to look at him, I swear he looks very healthy and chubby. The nurses and doctors have told us that when the transplant process is happening, the kids usually will stop eating all together. They just feel really crummy and are very weak, so they just have no interest in eating. If that happens, they will have to give him a feeding tube to make sure he is getting his nutrients. I think they can do some through his IV as well.
We were having some troubles getting him to eat for the past few days, but today he seems to be doing much better. I'm hoping it was just a weird phase, or that his nose was plugged up, making it hard for him to eat.
On a similar note, Cael has 2 teeth now! The second one just came in a week or 2 ago. He is chewing on EVERYTHING!
Friday, August 24, 2012
Technology
Kids being born now obviously have so many more technologies to grow up with than ever before. It amazes me how quickly Cael is learning about these things. For instance, when I raise the camera or my phone to take a picture, he smiles so big. Or when I grab my iPad, he immediately lunges for it, and when he gets to it, he starts smacking the screen. We have a few games on the iPad that are geared toward very young kids. There are a couple that have big keyed pianos, with characters that giggle or sing. Those are his favorite. He hasn't figured out the ones that require touching parts of the face or body, but he sure knows when that piano is in front of him that he can smack away and get sound out of it. He has even figured out that our phones do the same thing.
He was sitting in my lap when I grabbed the iPad to put on a little baby Einstein show for him. When he saw it, he dropped his blocks and started leaning every which way so he could see it fully. Lol. He is such a smart little thing!
He was sitting in my lap when I grabbed the iPad to put on a little baby Einstein show for him. When he saw it, he dropped his blocks and started leaning every which way so he could see it fully. Lol. He is such a smart little thing!
This is from the other day. He is so interested in the iPad. (We were watching Winnie the Pooh)
Thursday, August 23, 2012
August 23
I've never been to Houston before this, and I've never been to a city this big, except Chicago. I've certainly never been on a highway that had 7 lanes in each direction! I was trying to drive to work, which is 15 miles away, and it took me 40 minutes, without much traffic. There is no good way to get there without going on a toll road, for which I have no Tex Tag. So I hit every red light, it seems! The guys in the Houston office are being super helpful, just like my Austin guys. I can come and go as I please, make my own hours, work whatever days I want. I'm going to try to help out the Austin office, since they have gotten very busy. This happened when I left for maternity leave as well. That just be the trick, have Sarah leave, then the work will come pouring in. Does that make me lucky, or unlucky?
Doctors are hoping to have some information about the HLA typing this week. That is the tissue typing test they do to check if a donor is a suitable match. They are checking the antigens in the donor blood to see if it is compatible with Cael's. The closer the match, the less likely Graft vs Host disease will be. They are currently checking the blood cord bank for matches. I think they will know by the end of the week (wait, that is tomorrow...) or maybe next week if they found a full match, or if they will be using Adam or me. If they are using Adam or me, they will start e process with us to get our blood ready for donation. Again more on that when we find out which they are using.
I would like to take a minute to acknowledge our amazing babysitter, Kendra. She started taking care of Cael when he was just 6 weeks old, and helped us as needed until we went to Dell at the end of July. When we told her we were at the hospital, she brought us dinner in the first week. Then, while being 7 months pregnant, she went around our neighborhood with flyers to ask for donations for a garage sale to benefit us. She did all of this in just a few days and then gave us all the money they raised. Keep in mind that she is 7 months pregnant, and it was 100 degrees in Texas. She is incredibly sweet to do that for us!
Also, a big thanks to our neighbors, Brian, and Misty and Rema. They have been taking care if our dogs since we went to the hospital nearly a month ago. They do this all around their jobs and trying to have their own lives. I can't believe how lucky we are to live in the neighborhood we do, with next door neighbors who are so understanding and helpful. Hopefully they dogs will be picked up by some family soon and taken back to Indiana to be watched by our families until we can go home again. We were thinking about flying them back to Indiana, but airlines won't transport pets if the temp is over 85. So that isn't an option right now. The cats though...we are going to have to find a new permanent home for them. The immunology doctor in Austin said they are not good to have with an immune deficient person. Concerns about toxoplasmosis. Adam is not happy at all about this. Those are his cats! (I'm not really a cat person, so I'm not quite as torn up about giving them up) but we need to find a good home, hopefully in Austin where they can go. I'm not sure what it will take for Adam to give them up, but we both understand that this is what is best for Cael, and that is what matters most.
It's a good/bad thing we have quite some time to deal with all this. At this point I am thinking we have a good 3 months before we are back in our own home. I am already missing it! Especially our bed. Sharing a twin bed is not very fun, or comfortable. It will be a very happy day when we get to go home. For so many reasons. I can't wait.
Here is a cute pic, just for fun. He is just like me - anytime he sees a camera, the grin shows up. He is such a ham. :)
Doctors are hoping to have some information about the HLA typing this week. That is the tissue typing test they do to check if a donor is a suitable match. They are checking the antigens in the donor blood to see if it is compatible with Cael's. The closer the match, the less likely Graft vs Host disease will be. They are currently checking the blood cord bank for matches. I think they will know by the end of the week (wait, that is tomorrow...) or maybe next week if they found a full match, or if they will be using Adam or me. If they are using Adam or me, they will start e process with us to get our blood ready for donation. Again more on that when we find out which they are using.
I would like to take a minute to acknowledge our amazing babysitter, Kendra. She started taking care of Cael when he was just 6 weeks old, and helped us as needed until we went to Dell at the end of July. When we told her we were at the hospital, she brought us dinner in the first week. Then, while being 7 months pregnant, she went around our neighborhood with flyers to ask for donations for a garage sale to benefit us. She did all of this in just a few days and then gave us all the money they raised. Keep in mind that she is 7 months pregnant, and it was 100 degrees in Texas. She is incredibly sweet to do that for us!
Also, a big thanks to our neighbors, Brian, and Misty and Rema. They have been taking care if our dogs since we went to the hospital nearly a month ago. They do this all around their jobs and trying to have their own lives. I can't believe how lucky we are to live in the neighborhood we do, with next door neighbors who are so understanding and helpful. Hopefully they dogs will be picked up by some family soon and taken back to Indiana to be watched by our families until we can go home again. We were thinking about flying them back to Indiana, but airlines won't transport pets if the temp is over 85. So that isn't an option right now. The cats though...we are going to have to find a new permanent home for them. The immunology doctor in Austin said they are not good to have with an immune deficient person. Concerns about toxoplasmosis. Adam is not happy at all about this. Those are his cats! (I'm not really a cat person, so I'm not quite as torn up about giving them up) but we need to find a good home, hopefully in Austin where they can go. I'm not sure what it will take for Adam to give them up, but we both understand that this is what is best for Cael, and that is what matters most.
It's a good/bad thing we have quite some time to deal with all this. At this point I am thinking we have a good 3 months before we are back in our own home. I am already missing it! Especially our bed. Sharing a twin bed is not very fun, or comfortable. It will be a very happy day when we get to go home. For so many reasons. I can't wait.
Wednesday, August 22, 2012
August 22
Today was a nice, slow day. They drew some blood for labs this morning, but nothing else exciting as far as medical stuff goes.
They have sent off his blood to do a genetic testing to figure out exactly which form of SCID he has. They have it narrowed down to 2 or 3 types, including the X-related and IL7-R, and I think there is one more. It will take several weeks to get the results, but it will be helpful in planning our future family, as well as helpful for my siblings who would like families of their own. I am kind of hoping it isn't the X-related, that way my sisters won't have to be worried about passing this on to their sons. I don't know if one form is worse than another for Cael. I don't think so. If so, I guess I hope he has the least bad form of T depleted SCID.
Cael is at such a great age right now. And now that he is getting better and breathing easier, he has so much more energy! His new favorite things are eating his feet and standing. Before we got to Houston, he would never stand. As soon as his feet touched the ground, his knees would buckle. Now every time we go to pick him up, he wants to stand. He sticks his hands in his mouth, giggles and starts to squirm. It is so cute!
All the nurses have been saying how cute Cael is. I always knew he was cute, but I am a little biased. ;) But if all these nurses are saying he is so cute, it must just be the truth! He smiles for everyone who comes in, and hardly gives anyone a hard time. He got a shot today, which made him cry, but he was over it in less than 10 minutes. Then he was back to his happy self. We have gotten so lucky to have such a happy baby. It makes going through all of this a little easier. I just love seeing his happiness and hear his giggles every day.
I talked with my work today. Since we are in Houston, where we have another office, I am going to try working part time from the Houston office while we are here. I don't know if I'll be able to continue that for the entire time we are here, but I need to do it for now, at least, in order to make some money. All those pesky bills back at home aren't going to pay themselves. It will be nice (necessary, really) to have the income to help pay for that stuff. Now of anyone has a money tree, please let me know. I'd much rather use that!
In truth, though, I have the best job. Everyone has been so supportive at work, and done everything they can to help us out. I get calls occasionally from my boss, just to check on us and see how things are going. Plus they are giving me this option of working part time in Houston. I feel incredibly lucky to have such a great set of people to work with.
Cael is sleeping soundly. At least until 10 when they come in to do his ribovirin breathing treatment.
They have sent off his blood to do a genetic testing to figure out exactly which form of SCID he has. They have it narrowed down to 2 or 3 types, including the X-related and IL7-R, and I think there is one more. It will take several weeks to get the results, but it will be helpful in planning our future family, as well as helpful for my siblings who would like families of their own. I am kind of hoping it isn't the X-related, that way my sisters won't have to be worried about passing this on to their sons. I don't know if one form is worse than another for Cael. I don't think so. If so, I guess I hope he has the least bad form of T depleted SCID.
Cael is at such a great age right now. And now that he is getting better and breathing easier, he has so much more energy! His new favorite things are eating his feet and standing. Before we got to Houston, he would never stand. As soon as his feet touched the ground, his knees would buckle. Now every time we go to pick him up, he wants to stand. He sticks his hands in his mouth, giggles and starts to squirm. It is so cute!
All the nurses have been saying how cute Cael is. I always knew he was cute, but I am a little biased. ;) But if all these nurses are saying he is so cute, it must just be the truth! He smiles for everyone who comes in, and hardly gives anyone a hard time. He got a shot today, which made him cry, but he was over it in less than 10 minutes. Then he was back to his happy self. We have gotten so lucky to have such a happy baby. It makes going through all of this a little easier. I just love seeing his happiness and hear his giggles every day.
I talked with my work today. Since we are in Houston, where we have another office, I am going to try working part time from the Houston office while we are here. I don't know if I'll be able to continue that for the entire time we are here, but I need to do it for now, at least, in order to make some money. All those pesky bills back at home aren't going to pay themselves. It will be nice (necessary, really) to have the income to help pay for that stuff. Now of anyone has a money tree, please let me know. I'd much rather use that!
In truth, though, I have the best job. Everyone has been so supportive at work, and done everything they can to help us out. I get calls occasionally from my boss, just to check on us and see how things are going. Plus they are giving me this option of working part time in Houston. I feel incredibly lucky to have such a great set of people to work with.
Cael is sleeping soundly. At least until 10 when they come in to do his ribovirin breathing treatment.
Tuesday, August 21, 2012
First Post!
This is the first official post on the blog. I will be going back to fill in the time between pregnancy and now, but I wanted to get started with the new things that are happening. So you very likely see things repeated, but I'm sure you will understand. :)
To start off, here is a summary of what is going on. This is going to be pretty boring and fact intensive, so please bear with me.
Cael has been diagnosed with Severe Combined Immune Deficiency (SCID). It is a rare condition in which he was born without a part of his immune system. A normal immune system is made up several different types of cells. Within the white blood cells, there are several more subtypes. SCID affects the lymphocytes, which are about 30% of the white blood cells. Lymphocytes are broke into 4 types, T cells, B cells, NK cells, and immunoglobulins. Cael has very low counts of T cells, and his NK cells are also low. He has plen of B cells, but they aren't functioning because he hasn't got T cells to tell them to do work. He is also low on immunoglobulins. All of these cells are required to fight infections. Since he is missing parts, he is unable to fight infections. Because of that, he currently has 3 major viruses. He has RSV, parainfluenza, and pneumocystic pneumonia.
He is currently being treated for those viruses. For the pneumocystis, he is getting an injection 4 times a day of bactrim, an antibiotic as well as oral prednisone, a steroid. For the RSV and para influenza, he is getting a breathing treatment of ribovirin. For that, he is put into a croup box (a soft plastic enclosed box) where he breathes in a nebulized treatment for 2 hours at a time, three times a day. He is also getting voriconizal, an antifungal medicine to prevent any fungal infections.
Right now he is in a reverse isolation room at Texas Children's Hospital. Since he is in the bone marrow transplant unit there are several other children who are in the midst of a transplant. Therefore, they are concerned about transferring Cael's infections to the other kids. At the same time, they are worried about getting Cael sick with any other infections, so they have to make sure anyone who come in his room wears a gown, mask and gloves.
The immunoglobulin can be replaced with monthly injections, like a transfusion. A IV is hooked up and runs into his blood over a few hours. However, the lack of T and NK cells can only be fixed by getting a stem cell transplant. This is done with a bone marrow transplant (stem cell transplant). For the recipient, this is a fairly noninvasive procedure. For Cael, it will be like a blood transfusion, just hooking up to an IV for a few hours. There are a few ways to get a donor. The best option is to have a sibling who is a full match (related match). However, since we have no other kids, that isn't an option. Next option is an unrelated match. That would come form either a cord blood or from an adult donor. Cord blood is the better option since the blood is already in a bank, and they just go and get it. If an adult were to be a full match, they would either have to have the marrow taken directly from the pelvis bone, through several "shots" which each pull a little bit of marrow, or they would take a medicine that pulls the marrow from the bone into the blood stream, then donate their blood after several days of taking the medicine. If the marrow is pulled directly from the bone, for Cael's size, the donor would need to have around 10 "shots". Finally, they can use a related nonmatch (Adam or me). I'm not exactly sure how that works, or if is is more risky. More on that later, when we get more info.
For Cael, they are first looking for an unrelated match through the cord blood bank. If a match is not found, then they will use either Adam or me.
Before the transplant, Cael will have to have some sort of chemotherapy, or something similar, to kill off his entire immune system. They do this to reduce graft vs host disease (GvHD). That is where the donors stem cells attack Cael's cells and cause him to get very sick. This is not an uncommon occurrence, but is not a good scenario. I think that part is going to be the hardest. I can't imagine seeing him being super weak, losing hair, losing his color, and the loss of appetite. They told us that most times, the kids will stop eating all together. At that point, they will have to put a feeding tube in to make sure he is getting the appropriate nutrition and doesn't lose a lot of weight.
Assuming everything goes well, once he gets the transplant, he will have a brand new, working immune system. He will need check ups for the rest of his life, but will not require any kind of future injections or anything. The new stem cells will reproduce and create the T cells, B cells, NK cells, and immunoglobulins that are required for a functioning immune system.
There is a lot more information to come. I've already bored you enough for now, so check back for more updates. I promise it won't always be so long and boring!
Wednesday, August 1, 2012
Pregnancy and his birth
Adam and I found out I was pregnant in May of 2011. We found out just one week before he was to leave for Navy RTC (recruit training command). That is the Navy equivalent of boot camp. So off Adam went for 6 weeks to Great Lakes, Illinois. We were only able to converse through handwritten letters, and 2 phone calls, at times that were unknown to either of us. I was able to see him for a few days in July for his graduation from RTC. Then he was off to San Antonio for A School for another 8 weeks. At least then he was close enough that I could see him on the weekends he didn't have duty.
So for the first 16 weeks of knowing I was pregnant, I was off to doctors appointments and ultrasounds all on my own. I would send pictues to Adam during boot camp, including the 16 week ultrasound. During A School he would get to see me every few weeks and see how I was growing. He finally was home for good when I was about 6 months pregnant.
I started having Braxton hicks contractions at around 28 weeks or so. At 32 weeks, while we were at dinner, I noticed the contractions had become very regular. We ended up going to the hospital at 10:00 that night. I had to see a doctor who I was not familiar with. She pretty much told me I was being silly, there was nothing wrong and that I should just go home. I followed up with my doctor a few days later, who then told me that I was actually having preterm labor. I was already 2 cm dilated. He admitted me to the hospital to try and get the contractions to stop. They gave me a shot to help develop Cael's lungs, just in case I were to go into labor very early. I was in the hospital for 3 days, during which time they were able to get the contractions to slow down enough that they weren't concerned with early delivery.
They sent me home on bed rest to make sure I didn't deliver before 34 weeks. They were trying to get to 34 weeks since the hospital I was delivering at could only take care of babies over 34 weeks. After 2 weeks on bed rest (34 weeks pregnant), I returned to work. I continued to have contractions all day every day, but they were no longer regular. I was visiting the doctor every week just to make sure I wasn't progressing any more.
So for the first 16 weeks of knowing I was pregnant, I was off to doctors appointments and ultrasounds all on my own. I would send pictues to Adam during boot camp, including the 16 week ultrasound. During A School he would get to see me every few weeks and see how I was growing. He finally was home for good when I was about 6 months pregnant.
I started having Braxton hicks contractions at around 28 weeks or so. At 32 weeks, while we were at dinner, I noticed the contractions had become very regular. We ended up going to the hospital at 10:00 that night. I had to see a doctor who I was not familiar with. She pretty much told me I was being silly, there was nothing wrong and that I should just go home. I followed up with my doctor a few days later, who then told me that I was actually having preterm labor. I was already 2 cm dilated. He admitted me to the hospital to try and get the contractions to stop. They gave me a shot to help develop Cael's lungs, just in case I were to go into labor very early. I was in the hospital for 3 days, during which time they were able to get the contractions to slow down enough that they weren't concerned with early delivery.
They sent me home on bed rest to make sure I didn't deliver before 34 weeks. They were trying to get to 34 weeks since the hospital I was delivering at could only take care of babies over 34 weeks. After 2 weeks on bed rest (34 weeks pregnant), I returned to work. I continued to have contractions all day every day, but they were no longer regular. I was visiting the doctor every week just to make sure I wasn't progressing any more.
Around 35 weeks, I suddenly gained 6 pounds in 1 week. I was retaining fluid like none other. My ankles had disappeared, and when you pressed on my shin, it took several seconds for the skin to return to flat, instead of showing a finger dent. The doctor thought I might be preeclamptic since my blood pressure was a little high and i had protein in my urine. The next week though, the pressure hadn't increased beyond the limits of preeclampsia and there was no protein in my urine, so they decided I wasn't.
At my 37 week checkup, everything still looked okay. The doctor told me he would induce me at 39 weeks, if I hadn't already delivered, to make sure I had Cael by the end of the year. (my due date was January 3. I was really hoping to have him in 2011 since I had already paid so much toward my insurance. I didn't want to pay my deductible again!)
Friday, December 16, as I left work, my boss said, "Bye, see you Monday", to which I replied, "I hope not!". I was so tired of being pregnant! My feet were swollen, I had no ankles, and my face was so swollen, it looked like I had gained 100 lb!
At 1:30 AM, on December 17, I woke up, thinking I had peed myself! I went to the bathroom. And realized my water had broken. I woke Adam up, who was supposed to have drill for the Navy that weekend. He was supposed to leave at 6:00 AM to get to base. I told him my water had broken. His reply was "are you sure?". I said, "either that or I peed my pants!". We called the hospital and told them my water broke. When you call the hospital after hours, you have to wait for the on call doctor to call back. It took about 30 minutes for her to call back and tell me to come in. By that time, I was having contractions every 2-3 minutes, but they weren't painful.
When I got to the hospital, I found out the doctor on call was the same doctor who had told me nothing was going on and to go home at 32 weeks. I just kept hoping that I would be able to wait to deliver until after 7:00, since my normal doctor was on call on Saturday. I really really wanted my doctor to deliver my baby!
When I got to the hospital, I was 3 cm dilated. I wanted to make it as far as possible before getting an epideral. I walked around for an hour or so, when they finally told me I had to stay in my room so they could keep the regular monitors on me. The mobile ones kept loosing the hertbeat. I made it to 5 cm before the epideral. That was around 5 AM. I kept progressing well and made it past the 7:00 mark. I was so happy my doctor was going to be the one to deliver Cael!
At about 9:00, it seemed I had stalled at about 8 cm. they were thinking about giving me pictin to help me progress the rest of the way, but at 11:00, they came back, and I was ready to push. I pushed for about an hour. The umbilical cord had gotten wrapped around Cael's head, and his heart rate was dipping with each contraction I had. So finally, the doctor decided it was time for him to come out. He had to use forceps pull him out. As soon as he was born, they cut the cord and swept him over the the side to make sure everything was ok.
I remember seeing Adam just standing there watching them. I had to remind him to grab the camera and take some pictures of our newborn son. He was just standing there awestruck at our little boy. he helped them give him his first bath while they finished up with me and took me off the epideral.
I honestly don't remember much that happened next until we were in the post partum room and I was able to hold Cael. It was so strange to hold such a tiny little baby. He was 7lb 6 oz and 20 inches of pure perfection. We spent the next 2 days just staring at him and holding him all day. I, of course was up several times trying to learn how to breastfeed, while Adam tried to ignore the crying baby who kept waking us up.
After 2 days, everything was fine and we were finally able to go home with our baby. For the next few weeks we would just be spending all out time admiring our amazing new addition to our little family.
At about 9:00, it seemed I had stalled at about 8 cm. they were thinking about giving me pictin to help me progress the rest of the way, but at 11:00, they came back, and I was ready to push. I pushed for about an hour. The umbilical cord had gotten wrapped around Cael's head, and his heart rate was dipping with each contraction I had. So finally, the doctor decided it was time for him to come out. He had to use forceps pull him out. As soon as he was born, they cut the cord and swept him over the the side to make sure everything was ok.
I remember seeing Adam just standing there watching them. I had to remind him to grab the camera and take some pictures of our newborn son. He was just standing there awestruck at our little boy. he helped them give him his first bath while they finished up with me and took me off the epideral.
I honestly don't remember much that happened next until we were in the post partum room and I was able to hold Cael. It was so strange to hold such a tiny little baby. He was 7lb 6 oz and 20 inches of pure perfection. We spent the next 2 days just staring at him and holding him all day. I, of course was up several times trying to learn how to breastfeed, while Adam tried to ignore the crying baby who kept waking us up.
After 2 days, everything was fine and we were finally able to go home with our baby. For the next few weeks we would just be spending all out time admiring our amazing new addition to our little family.
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