I actually don't have a lot to say today, which is quite a change. Yesterday Cael got a dose of pamidronate to help with his calcium levels. It looks like it has helped. This morning his ionized calcium level was down to 1.28. 1.0 is normal, so he has a little way to go, but it is better than the 1.4 he was at yesterday morning. They will continue to monitor the level, and he will stay in the PCU until he is ready for the transplant process. The Allergy and Immunology doctors are going to talk with the transplant team about when they might be ready for him. A&I is hoping to send him back to the BMT unit for conditioning (chemo) on October 8, which would put the transplant about 2 weeks later. Hopefully transplant team is ready for him. We are really ready for him to get that.
Other good news is that he drank 4 times today and didn't throw up at all. We started with a mix of water and pedialite, then worked up to full pedialite. Yesterday he threw up the pedialite, so we went slow to work up to it. If he keeps down the pedialite tomorrow for a few drinks, we will work back up to formula. He was also in a better mood today. He was playful and smiling quite a bit more than the past few days.
Adam's grandma and grandpa Willis left this morning. I think they had a great time seeing Cael. It was unfortunate they had to see him on a few off days, but they still got to see some smiles. Grandpa Gene was so thrilled when Cael held out his arms for him to pick him up. And grandma Betty had fun tickling his knees and getting him to smile.
Adam's aunt Pam and uncle Joe also stopped by today. They were bouncing Cael all over the place. And, boy, did he enjoy that. He had so much more energy today. But then he kind of crashed while they were here. Several of his medications make him drowsy, so he was fighting sleep by the time they left.
It has been so nice to have people come visit us. I can't wait for Cael to be home again so we can have visitors at our house instead of at the hospital.
Saturday, September 29, 2012
Thursday, September 27, 2012
Lots of test
Today Cael got a CT of his head and chest. The head CT was to see if there was anything abnormal going on that might explain the vomiting. They said if there was swelling in his brain, that could cause headaches, which might cause vomiting. It came back normal. No tumors, and no excessive swelling that would explain the vomiting. There is talk of doing an MRI of his head as well to check his pituitary gland for hormonal issues.
They talked about a spinal tap to see if there are any infections in his brain. I don't know if they are still doing that after getting a normal CT back or not.
The vomiting has gotten worse. Now, instead of keeping food down for even 10 minutes, he throws up immediately after eating. He has also throw up a few times when he hadn't eaten anything at all. From all the vomiting, he now has some blood in it. So now there are concerns of some tearing in his esophagus. One doctor suggested doing an endoscopy to look at his esophagus for a fungal infection that might be impeding his eating and at his throat for tearing. They also talked about giving him a feeding tube in order to give him the fats that he should be getting from eating. They really don't want to put lipids in his TPN until he is about 2 weeks from transplant. There is just too much risk of a fungal infection. The GI doctor, however, doesn't want to do an endoscopy until they have exhausted all other medicinal options.
His calcium levels haven't changed much. Yesterday it was 1.41, this morning it was 1.39, and this evening 1.43. So tomorrow they will give him an injection of pamidronate. That is supposed to help reduce the calcium in his blood. But so were the other medicines he got which haven't done enough.
There is a little bit of good news. The chest CT is not any worse than before. This means they can move forward with the transplant process. Once he is through all of this calcium stuff, they will be able to set a date and start his conditioning.
Adam's grandmother and grandfather are visiting right now. While I'm sorry Cael is doing so poorly while they are visiting, I sitill think they are really enjoying seeing him. They think he is just so adorable. Gene even said he might take him home with him. :)
They talked about a spinal tap to see if there are any infections in his brain. I don't know if they are still doing that after getting a normal CT back or not.
The vomiting has gotten worse. Now, instead of keeping food down for even 10 minutes, he throws up immediately after eating. He has also throw up a few times when he hadn't eaten anything at all. From all the vomiting, he now has some blood in it. So now there are concerns of some tearing in his esophagus. One doctor suggested doing an endoscopy to look at his esophagus for a fungal infection that might be impeding his eating and at his throat for tearing. They also talked about giving him a feeding tube in order to give him the fats that he should be getting from eating. They really don't want to put lipids in his TPN until he is about 2 weeks from transplant. There is just too much risk of a fungal infection. The GI doctor, however, doesn't want to do an endoscopy until they have exhausted all other medicinal options.
His calcium levels haven't changed much. Yesterday it was 1.41, this morning it was 1.39, and this evening 1.43. So tomorrow they will give him an injection of pamidronate. That is supposed to help reduce the calcium in his blood. But so were the other medicines he got which haven't done enough.
There is a little bit of good news. The chest CT is not any worse than before. This means they can move forward with the transplant process. Once he is through all of this calcium stuff, they will be able to set a date and start his conditioning.
Adam's grandmother and grandfather are visiting right now. While I'm sorry Cael is doing so poorly while they are visiting, I sitill think they are really enjoying seeing him. They think he is just so adorable. Gene even said he might take him home with him. :)
Wednesday, September 26, 2012
Adrenal suppression, calcium, high heart rate
We were told yesterday that Cael has adrenal suppression. Basically, his pituitary gland, which created adrenaline and steroids that the body needs is not producing any. This is probably due to the steroids he was on for so long for his lungs. When he was on those steroids, his pituitary gland basically turned off, since it wasn't needing to make any of its own. Now that he is off the steroids for his lungs, his gland hasn't kicked back in. So now he is on more steroids, just to bring him back up to the normal level he should be at.
His calcium levels were decreasing, but then today it went up a little bit again. They still don't know what could be causing it. I think they are going to try some new medicines to see if it will help. Right now he is getting a deep muscle shot every 12 hours, called calcitonin. This medicine is supposed to help absorb some of the calcium. He is also on lasiks (diuretics) to help him pee out the excess. And lots of fluids. Since he pees so much, they have to pump him full of fluids to keep up. However, it doesn't seem to be quite enough. He has dry lips and a really dry mouth. So it looks like they will be bumping up the amount of fluids he gets today.
His heart rate is still very high. He is sleeping now, and it is in the 160s. It should be down near 100. When he is awake, it is in the 180s-190s, and when he is upset, in the 210s. Those should be in the 140-150s and 170ish. There are a few reasons they think he could have high heart rate. One is dehydration, which is indicated by the dry mouth and lips. To address that, they are probably increasing the fluid intake. Another is his high respiratory rate. While asleep he is around 45 breaths per minute, and awake is 70-80. It should be much lower. For that, they put him on a high flow nasal cannula. He is getting 8 liters of air pushed into his little nose every hour. When he was on the oxygen, and we were weening him, he was down to 1/4 or less liters per hour. He hated it at first. He wouldn't even breathe through his nose - he would just open his mouth and breathe. Poor guy! The high calcium and the low adrenal stuff could also be causing it, but he has been on steroids for a day and it hasn't helped, yet.
Lastly, he is still throwing up a lot. But on the plus side, he actually seems to be hungry occasionally. He ate 2 times today, but threw up after each one. Even after throwing up, he was still reaching for the bottle though. They have gotten rid of the zantac and replaced it with pantoprazole. I think the new one is just a better medicine for indigestion that Zantac. They also have him on zofran and adavent as needed. I'm not sure it is helping, since he threw up twice already today. Those were both after food, and not just at random times though, so maybe it will get better.
Today he is gettin an ultrasound on his head to see if there is any swelling or extra fluid that might be causing the heart rate problems. If they can't find what they need there, they will do a CT. If they do the CT, I have asked that they get the chest also. They will need a chest CT soon to continue the transplant process, so I want as few CTs as possible. He's already been exposed to so much radiation already, I want to try and minimize it as much as possible.
As for the transplant, it looks like the next step is a CT. As long as his lungs don't look worse, the allergy and immunology doctors will talk with the transplant team about setting a date for transplant. Fingers crossed all this stuff gets taken care of soon so we can continue the transplant p
His calcium levels were decreasing, but then today it went up a little bit again. They still don't know what could be causing it. I think they are going to try some new medicines to see if it will help. Right now he is getting a deep muscle shot every 12 hours, called calcitonin. This medicine is supposed to help absorb some of the calcium. He is also on lasiks (diuretics) to help him pee out the excess. And lots of fluids. Since he pees so much, they have to pump him full of fluids to keep up. However, it doesn't seem to be quite enough. He has dry lips and a really dry mouth. So it looks like they will be bumping up the amount of fluids he gets today.
His heart rate is still very high. He is sleeping now, and it is in the 160s. It should be down near 100. When he is awake, it is in the 180s-190s, and when he is upset, in the 210s. Those should be in the 140-150s and 170ish. There are a few reasons they think he could have high heart rate. One is dehydration, which is indicated by the dry mouth and lips. To address that, they are probably increasing the fluid intake. Another is his high respiratory rate. While asleep he is around 45 breaths per minute, and awake is 70-80. It should be much lower. For that, they put him on a high flow nasal cannula. He is getting 8 liters of air pushed into his little nose every hour. When he was on the oxygen, and we were weening him, he was down to 1/4 or less liters per hour. He hated it at first. He wouldn't even breathe through his nose - he would just open his mouth and breathe. Poor guy! The high calcium and the low adrenal stuff could also be causing it, but he has been on steroids for a day and it hasn't helped, yet.
Lastly, he is still throwing up a lot. But on the plus side, he actually seems to be hungry occasionally. He ate 2 times today, but threw up after each one. Even after throwing up, he was still reaching for the bottle though. They have gotten rid of the zantac and replaced it with pantoprazole. I think the new one is just a better medicine for indigestion that Zantac. They also have him on zofran and adavent as needed. I'm not sure it is helping, since he threw up twice already today. Those were both after food, and not just at random times though, so maybe it will get better.
Today he is gettin an ultrasound on his head to see if there is any swelling or extra fluid that might be causing the heart rate problems. If they can't find what they need there, they will do a CT. If they do the CT, I have asked that they get the chest also. They will need a chest CT soon to continue the transplant process, so I want as few CTs as possible. He's already been exposed to so much radiation already, I want to try and minimize it as much as possible.
As for the transplant, it looks like the next step is a CT. As long as his lungs don't look worse, the allergy and immunology doctors will talk with the transplant team about setting a date for transplant. Fingers crossed all this stuff gets taken care of soon so we can continue the transplant p
Tuesday, September 25, 2012
Transferred to PCU
Cael was transferred to the PCU (intermediate care) last night. His calcium levels are on a steady declining trend. If that stays the same today, he will be able to go back up to the bone marrow transplant unit today or tomorrow.
Yesterday was his worst day with throwing up. Everything that went into his mouth came back up, including all medicines and formula. He threw up 6 times yesterday, and twice already this morning. He only took 6 ounces of formula all day yesterday, and he threw it all up anyway. Today, he hasn't even eaten and he is still trying to throw up. Heis just getting mucous out right now when he throws up. He has been put on TPN around the clock now, so at least we know he is getting all of the nutrition he needs. The one thing that isn't in the TPN is fats, which he was supposed to get from the formula. They didn't want that in the TPN because it can cause a fungal infection. I don't know if they will add it now that he isn't drinking enough formula.
All of this moving around is pretty stressful. We have to deal with new nurses and doctors who don't know his history, and don't always do things the way we are used to. I'm hoping to get back up to the BMT unit soon so we have the people back who know him best.
Luckily this room in the PCU has a bed again, so at least we were able to sleep a little better last night.
Yesterday was his worst day with throwing up. Everything that went into his mouth came back up, including all medicines and formula. He threw up 6 times yesterday, and twice already this morning. He only took 6 ounces of formula all day yesterday, and he threw it all up anyway. Today, he hasn't even eaten and he is still trying to throw up. Heis just getting mucous out right now when he throws up. He has been put on TPN around the clock now, so at least we know he is getting all of the nutrition he needs. The one thing that isn't in the TPN is fats, which he was supposed to get from the formula. They didn't want that in the TPN because it can cause a fungal infection. I don't know if they will add it now that he isn't drinking enough formula.
All of this moving around is pretty stressful. We have to deal with new nurses and doctors who don't know his history, and don't always do things the way we are used to. I'm hoping to get back up to the BMT unit soon so we have the people back who know him best.
Luckily this room in the PCU has a bed again, so at least we were able to sleep a little better last night.
Sunday, September 23, 2012
Crazy day part 2
The last post was interrupted by the doctor coming in to tell us that Cael was being transferred to the PICU. His calcium levels went up, even after having the diuretic. So now he is in the PICU, and they gave him a calcitonin shot, which is supposed to help lower his calcium level. He will be down here until the calcium level is under control.
The main concern with the calcium was the rate at which it was increasing. It should be between 8 and 10.7. His was at 13.6 this morning, then 13.8 this afternoon, and 13.85 after getting the diuretic. I'm not sure how long it has been high, but it sounds like it jumped in just the past few days.
He has been throwing up again today ans the past 2 days. Today was quite a few times. Luckily, he had a good nurse today who came as soon as she heard his cry. He has a very distinct cry when he throws up, and she heard it from about 4 rooms down the hall.
He also has high heart rate and blood pressure. They did another EKG today and found that his rhythms were a little strange. So to follow that up, they did a chest x-ray. It looks like the sac around his heart is inflamed. It is called para carditis. It can be caused by stress. They said they see it in older healthy kids too, but more often in kids in the hospital. Tomorrow he will get an echo to make sure there isn't any fluid in the sac. He will also get another EKG.
They also did an ultrasound on his kidney and stomach to see if there were any kidney stones or anything wrong. They didn't see anything worth noting, so I guess that's good.
Right now, they are working to get his calcium under control. I'm really hoping it happens very soon. There is nowhere in his room in the PICU to sleep. There are just 2 chairs to sit in. There is a waiting room with reclining chairs, but really, we both just want to be right by Cael. I know everyone will say we need to get our rest and go to the waiting room, but right now, we just don't want to do that. Maybe in a day or so we will feel different.
We also have no idea what we are going to do with all the stuff we have accumulated in his room. We have a lot of big toys, playmats, and food that we have nowhere to put here in the PICU room.
The main concern with the calcium was the rate at which it was increasing. It should be between 8 and 10.7. His was at 13.6 this morning, then 13.8 this afternoon, and 13.85 after getting the diuretic. I'm not sure how long it has been high, but it sounds like it jumped in just the past few days.
He has been throwing up again today ans the past 2 days. Today was quite a few times. Luckily, he had a good nurse today who came as soon as she heard his cry. He has a very distinct cry when he throws up, and she heard it from about 4 rooms down the hall.
He also has high heart rate and blood pressure. They did another EKG today and found that his rhythms were a little strange. So to follow that up, they did a chest x-ray. It looks like the sac around his heart is inflamed. It is called para carditis. It can be caused by stress. They said they see it in older healthy kids too, but more often in kids in the hospital. Tomorrow he will get an echo to make sure there isn't any fluid in the sac. He will also get another EKG.
They also did an ultrasound on his kidney and stomach to see if there were any kidney stones or anything wrong. They didn't see anything worth noting, so I guess that's good.
Right now, they are working to get his calcium under control. I'm really hoping it happens very soon. There is nowhere in his room in the PICU to sleep. There are just 2 chairs to sit in. There is a waiting room with reclining chairs, but really, we both just want to be right by Cael. I know everyone will say we need to get our rest and go to the waiting room, but right now, we just don't want to do that. Maybe in a day or so we will feel different.
We also have no idea what we are going to do with all the stuff we have accumulated in his room. We have a lot of big toys, playmats, and food that we have nowhere to put here in the PICU room.
Crazy day part 1
Today has been crazy. Yesterday and Friday were pretty uneventful. Just the usual stuff going on. Today, however...
Adam has been gone this weekend. He was back in Austin for Navy drill this weekend, so I was on my own. Yesterday the doctos told me that Cael's calcium levels were a little high and his potassium was a little low. The potassium can be fixed just by giving him some extra potassium in his TPN (IV nutrients). The calcium has been a bit more of a problem. They don't know, yet, why his calcium is high. There are a few possibilities. 1) The voriconizal he is on to prevent a fungal infection. Since he doesn have any fungal infection, they stopped that medication. 2) His vitamin D levels might be high, which is apparently related to calcium. They had him on supplemental vitamin D since he was low when he got here 5 weeks ago, so they have stopped that. They also took it out of his TPN. 3) A parathyroid problem. They cannot test the parathyroid or vitamin D levels until tomorrow.
High calcium can be a major problem. It affects the heart and the kidneys. They said that his nausea and lack of eating might be caused by the high calcium. He has also been pretty fussy the past few days, which may be caused by the high calcium. Right now they have given him something to help him pee a lot, which is supposed to help him get rid of the extra calcium. They are drawing blood and checking it every 6 hours to make sure the levels have not gone up at all. They just started the medicine at makes him pee about an hour ago. They drew blood about 30 minutes ago to check the calcium level. If it has not gone down, they are going to transfer him to the PICU until they can get it under control. The reason for that is the doctor wants him somewhere he can be under more supervision. In the PICU, there are less patients per nurse and an attending present at all times.
Adam has been gone this weekend. He was back in Austin for Navy drill this weekend, so I was on my own. Yesterday the doctos told me that Cael's calcium levels were a little high and his potassium was a little low. The potassium can be fixed just by giving him some extra potassium in his TPN (IV nutrients). The calcium has been a bit more of a problem. They don't know, yet, why his calcium is high. There are a few possibilities. 1) The voriconizal he is on to prevent a fungal infection. Since he doesn have any fungal infection, they stopped that medication. 2) His vitamin D levels might be high, which is apparently related to calcium. They had him on supplemental vitamin D since he was low when he got here 5 weeks ago, so they have stopped that. They also took it out of his TPN. 3) A parathyroid problem. They cannot test the parathyroid or vitamin D levels until tomorrow.
High calcium can be a major problem. It affects the heart and the kidneys. They said that his nausea and lack of eating might be caused by the high calcium. He has also been pretty fussy the past few days, which may be caused by the high calcium. Right now they have given him something to help him pee a lot, which is supposed to help him get rid of the extra calcium. They are drawing blood and checking it every 6 hours to make sure the levels have not gone up at all. They just started the medicine at makes him pee about an hour ago. They drew blood about 30 minutes ago to check the calcium level. If it has not gone down, they are going to transfer him to the PICU until they can get it under control. The reason for that is the doctor wants him somewhere he can be under more supervision. In the PICU, there are less patients per nurse and an attending present at all times.
Thursday, September 20, 2012
TPN, RSV, and oxygen
The doctors finally started Cael on TPN (IV nutrients). He will be on the TPN over night, then we will try with the formula again tomorrow. We will continue with TPN at night time and formula in the day as long as necessary. We know that once conditioning starts he will stop eating all together, but we will keep trying with the formula as long as possible. We didn't want it to get to this, but I am happy he is now getting the extra nutrients he isn't getting due to his poor eating.
While he didn't really eat much (only 16 ounces today), I am happy to say that he didn't throw up at all today. Not sure if he is feeling a little better, or if it's just that he didn't have enough in his stomach to throw up. The only thing to doctors could come up with as a reason for him throwing up the past few days is the RSV. Before, he was only positive for RSV when they did the lung wash during the bronchoscope in July. They have checked every week, and this week was the first time it was positive when tested in a nasal wash. Because of that, he is having more mucous up in his throat and nose, which may have been what was making him throw up
They lowered his oxygen last night to 1/8 liter, and all of today his blood oxygen level was up at 95-97%. They also lowered his steroid to once a day a couple days ago, so the fact that his levels are so high is really good news.
They lowered his oxygen last night to 1/8 liter, and all of today his blood oxygen level was up at 95-97%. They also lowered his steroid to once a day a couple days ago, so the fact that his levels are so high is really good news.
The wife of one of the principals of my work stopped by today with lunch and lots of snacks for Adam and me. She brought us so many good things! I still can't thank my work people enough for how understanding they have been through all of this.
I was a little all over the place in this post. Just a lot of little things to report today.
Wednesday, September 19, 2012
September 19
It's been a rough couple of days. The throwing up has continued, with 4 times yesterday and twice today. And his appetite has come down even more than before. Today he only drank 15 ounces. We spoke to the dietician about trying to feed him more solid foods, like baby food or even very soft veggies. We were thinking that maybe he just is tired of drinking all his meals, and is ready for more solid stuff. Before we went into the hospital 2 months ago, he was eating very thick puréed fruits and vegetables. We were having some choking problems with more chunky things, but he did well with the purees. However, he now doesn't seem interested in solid foods either. Even his very favorite food of apples doesn't interest him.
For those who wonder why I am so hung up on his eating, this is why; he has already begun to lose weight. He has lost about 1/2 pound in the past week or so. That doesn't sound like much, but when he was only at 17 lb, it seems a little worse. Also, we know that once he starts the chemotherapy, he will stop eating completely. At that point he will be put on IV fluids to give him all the calories and nutrients he needs. But for right now, the doctors will not do that. They want him to take as much by mouth, for as long as possible. So it is left up to Adam and me to make sure he is getting as much as he needs. He has been put on fluids several times to rehydrate him, and he has bumped up from 20 calories/oz formula to 22 calories/oz formula, but nothing has been done for the lack of nutrients. I realize that most babies go through a little phase where they don't eat much because they are teething or growing through a growth spurt, but with Cael, it has been a constant battle for almost a month to get him to eat. He will take about 1-1.5 oz before he starts to push the bottle away. We then spend the next hour trying to get him to take about 6-7 ounces total. I don't mean to say the same things over and over when it comes to his eating, but that is one of the big problems he has that I feel I have just a little control over. And I may honestly be delusional to think I have any control over that. Today kind of proves that. He is only going to eat as much as he wants, not how much I tell him.
Aside from that, he got an echo yesterday evening, and then was out on a holter monitor for 24 hours to monitor his heart. That was all because of his high heart rate. We thought we were going to see a cardiologist yesterday, but didn't. Then we thought we would see one today, but again did not. I guess one might come tomorrow about the results of the EKG, echo and holter monitor. However, they put him on fluids last night, and his heart rate, again, is doing much better. He obviously isn't getting enough fluids since this is the second time that has worked to bring his heart rate down. Just another reason I'm so worried about his eating (drinking).
We had a day like this last week, where he didn't eat much, then the next day was back to normal, so I am hopeful that tomorrow he will eat much better than today.
For those who wonder why I am so hung up on his eating, this is why; he has already begun to lose weight. He has lost about 1/2 pound in the past week or so. That doesn't sound like much, but when he was only at 17 lb, it seems a little worse. Also, we know that once he starts the chemotherapy, he will stop eating completely. At that point he will be put on IV fluids to give him all the calories and nutrients he needs. But for right now, the doctors will not do that. They want him to take as much by mouth, for as long as possible. So it is left up to Adam and me to make sure he is getting as much as he needs. He has been put on fluids several times to rehydrate him, and he has bumped up from 20 calories/oz formula to 22 calories/oz formula, but nothing has been done for the lack of nutrients. I realize that most babies go through a little phase where they don't eat much because they are teething or growing through a growth spurt, but with Cael, it has been a constant battle for almost a month to get him to eat. He will take about 1-1.5 oz before he starts to push the bottle away. We then spend the next hour trying to get him to take about 6-7 ounces total. I don't mean to say the same things over and over when it comes to his eating, but that is one of the big problems he has that I feel I have just a little control over. And I may honestly be delusional to think I have any control over that. Today kind of proves that. He is only going to eat as much as he wants, not how much I tell him.
Aside from that, he got an echo yesterday evening, and then was out on a holter monitor for 24 hours to monitor his heart. That was all because of his high heart rate. We thought we were going to see a cardiologist yesterday, but didn't. Then we thought we would see one today, but again did not. I guess one might come tomorrow about the results of the EKG, echo and holter monitor. However, they put him on fluids last night, and his heart rate, again, is doing much better. He obviously isn't getting enough fluids since this is the second time that has worked to bring his heart rate down. Just another reason I'm so worried about his eating (drinking).
We had a day like this last week, where he didn't eat much, then the next day was back to normal, so I am hopeful that tomorrow he will eat much better than today.
Monday, September 17, 2012
EKG, Echo, and more eating stuff
Today was looking like a good day. Until the evening.
He was eating ok. Well, ok relative to how he has been eating. It wasn't worse at least. And at dinner, he actually took most of his milk from a soppy cup with a straw. Then after he ate, his heart rate suddenly jumped up to 205. It stayed up at 170-180 for half an hour, and he wasn't super excited or anything. Just long enough for the nurse to call the doctor and for them to schedule an EKG. Then it went back down to the somewhat normal range. So they did an EKG and have an echo scheduled for tomorrow morning. He also has a cardio consult tomorrow. I don't know if that is just the echo, or if there will be more to that.
Also, after he started drinking his bedtime meal, he took about 1 ounce, started coughing, then threw up. A lot. Much more than the 1ounce he had taken. So he must have thrown up some of what he ate earlier, too. He was able to take some more after all that, so at least he won't wake up hungry in the middle of the night.
The dietician is talking with the doctors about his eating. He has been eating so slowly. We keep getting told that it's just what SCID babies do; they just stop eating well. However, I don't like that explanation. I don't want to just deal with him eating poorly. I want to make sure he is eating how much he should be and keeping his weight up. We can tell that he has been getting thinner. Well, more like he has been growing longer, and the weight is just spreading out. He hasn't been losingweight, but he hasn't gained either. He is stuck right around 17 lb (7.6 kg).
I know he is old enough to be eating more solid foods, but the only option we have here is jarred baby food. The dietician and doctors want him taking as much formula as possible first because it has all the nutrients he needs. If he eats baby food, he won't be getting a balanced diet and all the nutrition he needs. So we are spending most of our time trying to get him to drink that. It concerns me a little that we won't be able to get him on solid foods until we are back home again. At which time he will be a year old.
And now I'm a little bummed. I hadn't really done the math before nowhere but it looks like we won't be back at our own home before some time in December. Which means we will very likely be away from home for his first birthday and for Christmas.
To end this blog on a happier note...happy 9 months to Cael! I can't believe he is already 9 months old. As always, I think he is just the sweetest, cutest baby there ever was. The nurses have nicknamed him the gerber baby. They all just think he is so cute and such a good baby. And
He was eating ok. Well, ok relative to how he has been eating. It wasn't worse at least. And at dinner, he actually took most of his milk from a soppy cup with a straw. Then after he ate, his heart rate suddenly jumped up to 205. It stayed up at 170-180 for half an hour, and he wasn't super excited or anything. Just long enough for the nurse to call the doctor and for them to schedule an EKG. Then it went back down to the somewhat normal range. So they did an EKG and have an echo scheduled for tomorrow morning. He also has a cardio consult tomorrow. I don't know if that is just the echo, or if there will be more to that.
Also, after he started drinking his bedtime meal, he took about 1 ounce, started coughing, then threw up. A lot. Much more than the 1ounce he had taken. So he must have thrown up some of what he ate earlier, too. He was able to take some more after all that, so at least he won't wake up hungry in the middle of the night.
The dietician is talking with the doctors about his eating. He has been eating so slowly. We keep getting told that it's just what SCID babies do; they just stop eating well. However, I don't like that explanation. I don't want to just deal with him eating poorly. I want to make sure he is eating how much he should be and keeping his weight up. We can tell that he has been getting thinner. Well, more like he has been growing longer, and the weight is just spreading out. He hasn't been losingweight, but he hasn't gained either. He is stuck right around 17 lb (7.6 kg).
I know he is old enough to be eating more solid foods, but the only option we have here is jarred baby food. The dietician and doctors want him taking as much formula as possible first because it has all the nutrients he needs. If he eats baby food, he won't be getting a balanced diet and all the nutrition he needs. So we are spending most of our time trying to get him to drink that. It concerns me a little that we won't be able to get him on solid foods until we are back home again. At which time he will be a year old.
And now I'm a little bummed. I hadn't really done the math before nowhere but it looks like we won't be back at our own home before some time in December. Which means we will very likely be away from home for his first birthday and for Christmas.
To end this blog on a happier note...happy 9 months to Cael! I can't believe he is already 9 months old. As always, I think he is just the sweetest, cutest baby there ever was. The nurses have nicknamed him the gerber baby. They all just think he is so cute and such a good baby. And
Saturday, September 15, 2012
Test results, heart rate, oxygen and eating
The results of the urine test show that everything is normal. There were 2 of 8 liver enzymes that are high. The tests they did on those show that one of them stayed steady and the other went down. S at least they aren't getting worse.
His heart rate has been pretty high for the past few days. We told them about our concerns several days ago, but nothing was done about it. The doctor we saw today decided to put him on some fluids in case he was a little dehydrated (which they checked for, and determined he was a little bit). His blood pressure head also been high. They are hoping that by hydrating him, it will bring both down.
Also due to the higher heart rate, they did a chest x-ray. They were looking for any new infection that might be causing the high heart rate. But that didn't show anything new. The doctor said it didn't necessarily look any better than the ones before, but it didn't look like there was anything new either.
His oxygen need went up from 1/8 liter per hour to 1/4 liter per hour. They want his blood oxygen level to stay above 93%, and at 1/8 liter it was at about 92. Now he is at 95 while sleeping, which is usually lower than when he is awake.
He ate a little better today. He drank 27 ounces today. We still have to work on him to eat. It still is taking an hour for him to take each bottle, and we have to trick him by playing with a toy above his head while he eats, but still, it was better than yesterday
Friday, September 14, 2012
Ultrasound results
The results of the ultrasound came back today. They said that it looks like there is some blockage in his kidney. They collected a urine sample to do some test on today or tomorrow. Also, his liver enzymes are a little bit higher than they should be. The last thing they said is that everything is moving very slowly, in regards to digestion. The liver problems may be due to one of the medicines he is taking. That medicine is a preventative for fungal infections. He doesn't, and hasn't had any fungal infections, so they might take him off that medication. They have to check with the transplant doctor first. As he gets closer to transplant, they would probably want him on it anyway. I don't know what is causing the slow digestion, or the kidney blockage. They really didn't give us any more information about those things.
I find it very hard to make sure I ask all the questions to the doctors when they give us new information. Luckily, we see them every day, so we can ask new questions tomorrow. Such as, what is causing the slow digestion. Seems like something I should have asked when they were here earlier. And maybe I did, but just didn't get an answer. That seems to happen a lot. We ask a question, and they do everything except answer it. They tell us all kinds of information, but never really answer the question we asked. Tomorrow I will be sure to ask more about what they found on the CT.
There was no more throwing up today, and his appetite was a bit better. Yesterday he took 17 ounces, and today he took 24. It still isn't as much as he should be having, but it is a step in the right direction. And today was e first time in weeks that he actually cried because he was hungry. For several weeks, we have been feeding him every 3-4 hours, whether he indicated he was hungry or not. Today, he woke up from his night sleep at 7:00, crying for food, and again from his afternoon nap because he was hungry. Perhaps he was just having a very bad day yesterday with the eating.
He is cutting two new teeth on the top! He is chewing on everything and sucking on his lips a lot. I guess that could be another reason that he isn't eating well. Poor guy. On top of all this other stuff, he has to deal with teething! He is really being good though. He isn't particularly fussy or anything. He is SUCH a good baby.
Thursday, September 13, 2012
Still not eating well
Cael's eating is getting worse. Today he only drank 18 ounces of formula. Last week he was averaging about 30 ounces per day. A month ago, it was 40 ounces per day. I seem to be better at getting him to take the formula than Adam. When I got back today from work, I was able to get him to take 6.5 ounces, while Adam could only get him to take 11 ounces all day, in 2-3 ounce feedings.
I'm not getting to work as much as I thought I would. Since he has been having bad days, I haven't been going to work as much. It's just too much to try and work when I can only concentrate on Cael. Plus i dont want to leave Adam alone to deal with him throwing up a lot. It is quite stressful to deal with trying to clean him up, make sure he doesn't choke or aspirate, and get the nurse when you are all alone.
They did an ultrasound on Cael's belly today to see if anything looked strange, or if there was anything obstructing it. We haven't heard anything about it yet. Maybe tomorrow the doctor will tell us what they found out.
He also got IV-IG today. That is when they give him IgG, which is the immunoglobulin that his body doesn't produce enough of. I think he will continue to get that every few weeks until it has been determined that his immune system is re-established. Once his immune system is back up, he should be able to produce IgG.
Cael didn't throw up at all today. Although, that may be in part to due with him not eating much at all today. That's about the best news of today. Oh, actually there is one more bit. The doctor seems to think he will be getting his CT next week. After that, if it looks good, they will try to set a date for the transplant. I'm not holding my breathe for it though. They keep saying things like that, then it gets pushed back. I guess we will just have to wait and see. (which seems like all we are doing right now)
I'm not getting to work as much as I thought I would. Since he has been having bad days, I haven't been going to work as much. It's just too much to try and work when I can only concentrate on Cael. Plus i dont want to leave Adam alone to deal with him throwing up a lot. It is quite stressful to deal with trying to clean him up, make sure he doesn't choke or aspirate, and get the nurse when you are all alone.
They did an ultrasound on Cael's belly today to see if anything looked strange, or if there was anything obstructing it. We haven't heard anything about it yet. Maybe tomorrow the doctor will tell us what they found out.
He also got IV-IG today. That is when they give him IgG, which is the immunoglobulin that his body doesn't produce enough of. I think he will continue to get that every few weeks until it has been determined that his immune system is re-established. Once his immune system is back up, he should be able to produce IgG.
Cael didn't throw up at all today. Although, that may be in part to due with him not eating much at all today. That's about the best news of today. Oh, actually there is one more bit. The doctor seems to think he will be getting his CT next week. After that, if it looks good, they will try to set a date for the transplant. I'm not holding my breathe for it though. They keep saying things like that, then it gets pushed back. I guess we will just have to wait and see. (which seems like all we are doing right now)
Tuesday, September 11, 2012
Another sick day
Today was another not so good day. Cael threw up after 3 of his 5 meals. By his last one, I was almost scared to feed him, thinking he would throw up, which he did. After the second time, I had decided to talk with the doctors about it. When they came in, they confirmed what I had suspected - he has C Diff again. They tested him 3 times since last week to see if it was gone. The first two were negative, but the last was positive again. I'm not sure if it ever went away, or if it just went down enough to show as a negative when they tested.
The doctor thinks that the c diff might be the cause of his nausea. They have started him on vancomycin, which he will be on for about 2 weeks. It is supposed to be enter than the flagyl that he already took for c diff last week. That is assuming he can keep it down, and not throw up. He is also taking Zantac to try and ease his stomach.
The nurses told us that this would be very common once he starts the chemotherapy. Another great side effect to that. I feel bad for Cael. Not only is he sick with all these viruses, but he has to deal with feeling nauseous, too. The only good thing is that he is so young, he won't remember all of this.
There is one piece of good news that we got today. They have finally picked a cord blood to use for the transplant. They did an antigen testing first, then switched to an allele testing, which is supposed to be much better results. They found 3 cords with 5 out of 6 allele matches, which is very good. Then they picked the best one.
So now we just have to get him a little better, and they will be ready for transplant. That is much easier said than done. He needs to be completely off the oxygen, and then they will do another CT and the lung capacity test. They really can't give me a good answer as far as how much better he needs to be before they will do the transplant. They just keep saying that he needs to have his virus loads as low as possible, but they want to do the transplant as soon as possible. So they have to weigh those two things against each other to come up with the time they will do the transplant. At this point, we still have no idea when that will be.
The doctor thinks that the c diff might be the cause of his nausea. They have started him on vancomycin, which he will be on for about 2 weeks. It is supposed to be enter than the flagyl that he already took for c diff last week. That is assuming he can keep it down, and not throw up. He is also taking Zantac to try and ease his stomach.
The nurses told us that this would be very common once he starts the chemotherapy. Another great side effect to that. I feel bad for Cael. Not only is he sick with all these viruses, but he has to deal with feeling nauseous, too. The only good thing is that he is so young, he won't remember all of this.
There is one piece of good news that we got today. They have finally picked a cord blood to use for the transplant. They did an antigen testing first, then switched to an allele testing, which is supposed to be much better results. They found 3 cords with 5 out of 6 allele matches, which is very good. Then they picked the best one.
So now we just have to get him a little better, and they will be ready for transplant. That is much easier said than done. He needs to be completely off the oxygen, and then they will do another CT and the lung capacity test. They really can't give me a good answer as far as how much better he needs to be before they will do the transplant. They just keep saying that he needs to have his virus loads as low as possible, but they want to do the transplant as soon as possible. So they have to weigh those two things against each other to come up with the time they will do the transplant. At this point, we still have no idea when that will be.
Monday, September 10, 2012
September 10
Poor Cael got sick again this evening. I was giving him his oral medicines, and he threw it all up immediately. I think he may have inhaled a little bit of it. I heard him sputter a little when he took it, so I sat him up real quick, and that's when he did it.
He also has a little infection on his finger. It looks like his nail grew into the skin and caused it. It's all red and tender. It's amazing that something so little like that can cause so much worry. For anyone else, it would just be a sore spot that goes away in a few days, but for Cael, they have to put antibiotic ointment on it and keep a close eye on it to make sure it doesn't cause any bigger problems in his little body.
It's such a terrible feeling, knowing he is so sick and there is nothing I can do about it. I know I have done all I can do by bringing him to the hospital. I am just feeling worn down. We have been in hospitals for nearly 2 months, and it seems like we are still so far away from the transplant, let alone going home. I miss home, my routine, home cooked food, trips to the store with Cael, and going out to eat because I want to, not have to. I don't know of I will ever want to go out for fast food again after all this. Maybe I should spend my extra time finding good recipes so we will have months worth of dinners lined up by the time we go home. Although fast food is better than the hospital food!
We don't have any new news. It seems like we are just waiting around until they see some sort or improvement, aside from his lungs sounding better. Maybe if we can wean him off the oxygen, that will be a better indicator. The doctors visits are getting very short. They just come in, listen to him, and ask if we have any questions, then leave. I wish there was something more they would do to get him better, in respect to the viruses. If whatever they did the last 3 weeks hasn't made any difference in the CT, I feel like something different needs to be done. It's so frustrating to not know anything, and just have to go with what the doctors say.
I'm just having one of those days. Tomorrow is a new day.
He also has a little infection on his finger. It looks like his nail grew into the skin and caused it. It's all red and tender. It's amazing that something so little like that can cause so much worry. For anyone else, it would just be a sore spot that goes away in a few days, but for Cael, they have to put antibiotic ointment on it and keep a close eye on it to make sure it doesn't cause any bigger problems in his little body.
It's such a terrible feeling, knowing he is so sick and there is nothing I can do about it. I know I have done all I can do by bringing him to the hospital. I am just feeling worn down. We have been in hospitals for nearly 2 months, and it seems like we are still so far away from the transplant, let alone going home. I miss home, my routine, home cooked food, trips to the store with Cael, and going out to eat because I want to, not have to. I don't know of I will ever want to go out for fast food again after all this. Maybe I should spend my extra time finding good recipes so we will have months worth of dinners lined up by the time we go home. Although fast food is better than the hospital food!
We don't have any new news. It seems like we are just waiting around until they see some sort or improvement, aside from his lungs sounding better. Maybe if we can wean him off the oxygen, that will be a better indicator. The doctors visits are getting very short. They just come in, listen to him, and ask if we have any questions, then leave. I wish there was something more they would do to get him better, in respect to the viruses. If whatever they did the last 3 weeks hasn't made any difference in the CT, I feel like something different needs to be done. It's so frustrating to not know anything, and just have to go with what the doctors say.
I'm just having one of those days. Tomorrow is a new day.
Sunday, September 9, 2012
September 9
We had a pretty calm weekend. No tests done, no new news. Cael did okay with is eating. One day he ate lots each meal, but the next he ate very little each time, and just ate a lot more often. We were told not to force him to eat. We have taught him the sign for milk, which has very much come in handy! When he is hungry, he will sign. So every time he makes the sign, we offer him some formula. Instead of forcing him to eat a lot each time, and just offering it when he says he wants it, has taken away a little bit of the stress that came along with feeding him. However, I still worry about the total ounces he eats each day. I really want it to be around 30 ounces, minimum so in the evening, if he hasn't had enough, I stress a little, and try to get him to eat more.
They have also increased the calories in his formula. Typical formula has 20 calories per ounce. They have increased his to have 22 calories per ounce. Hopefully that will help with his weight. He has been up and down again. He was up to 7.8, then went down to 7.6 over 3 days, and is now back up to 7.8 again.
We now have some mats to put on the ground for Cael to play on, so we are trying to help him learn to crawl. He seems like he really wants to move, but really isn't trying to crawl at all. He lays on his tummy, lifts his front, and kicks his legs. But as soon as I lift his bottom and put him on his knees, he face plants on the ground and won't hold his weight up. One doctor said he should be able to crawl by now, but I'm still not too worried. He is able to stand with some help balancing, so I'm thinking maybe he just doesn't want to crawl, and will go straight to walking. I know all babies develop on their own schedule, so I'm not too worried just yet.
They have also increased the calories in his formula. Typical formula has 20 calories per ounce. They have increased his to have 22 calories per ounce. Hopefully that will help with his weight. He has been up and down again. He was up to 7.8, then went down to 7.6 over 3 days, and is now back up to 7.8 again.
We now have some mats to put on the ground for Cael to play on, so we are trying to help him learn to crawl. He seems like he really wants to move, but really isn't trying to crawl at all. He lays on his tummy, lifts his front, and kicks his legs. But as soon as I lift his bottom and put him on his knees, he face plants on the ground and won't hold his weight up. One doctor said he should be able to crawl by now, but I'm still not too worried. He is able to stand with some help balancing, so I'm thinking maybe he just doesn't want to crawl, and will go straight to walking. I know all babies develop on their own schedule, so I'm not too worried just yet.
Friday, September 7, 2012
Oh my goodness..more visitors!
We had MORE visitors today! Adam's Aunt Pam and Uncle Joe came to visit Cael and bring us some goodies. They live in Houston, so we will probably get to see them a few more times. They brought me some stuff to make peanut butter and jelly for my lunches, and brought Adam some crepes. We are both very happy. :) Cael warmed up to them pretty quickly. Pam wanted to make sure he got to know her so maybe one day she can come watch him. And Adam and I can go out for dinner. That will be nice to have the opportunity to get out of the hospital together and know he is being watched by someone other than a nurse who has other patients.
Cael had a good today. He was eating quite a bit better than he was the past few days. He also hasn't had such bad digestive problems. They have checked twice for C Diff since he was diagnosed with it, and both tests were negative. They need to have 3 negative tests before deciding he doesn't have it any longer. They are doing the last test tonight.
They are slowly weaning him off the steroids. It seems to be going ok so far. He hasn't become any more wheezy, which is how he sounded before being on the steroids. They say by lowering the steroids, he may need more oxygen, but that hasn't happened just yet. Hopefully they wean slowly enough that he doesn't need more oxygen. They really want him off the oxygen before getting the transplant.
Adam's and my anniversary was yesterday. 4 years! So we had a special dinner of takeout Chili's. Lol. Not very fancy, but so much nicer than what we have been eating for the past 6 weeks!
Cael had a good today. He was eating quite a bit better than he was the past few days. He also hasn't had such bad digestive problems. They have checked twice for C Diff since he was diagnosed with it, and both tests were negative. They need to have 3 negative tests before deciding he doesn't have it any longer. They are doing the last test tonight.
Adam's and my anniversary was yesterday. 4 years! So we had a special dinner of takeout Chili's. Lol. Not very fancy, but so much nicer than what we have been eating for the past 6 weeks!
Cael got a bath today to make sure he looked handsome for his visitors.
Wednesday, September 5, 2012
Good news/bad news about the CT
Good news first. Cael is weaning off the oxygen again pretty well. He was at 0.25 liters for a few days, and now he is down to 0.125 liters. Today he didn't throw up like he did the past 2 days. They don't know for sure what was causing that, but they think it might have something to do with being back on the oxygen. I don't really understand that though. He didn't get sick when he was first put on the oxygen, and it's not like he was put on a high amount. Other good news is that the air bubbles that were showing up outside of his lungs are gone.
Now the not so good news. The CT scan shows that there is no change at all in the infection in his lungs. So now we wait for at least 2 more weeks to do another CT scan to see if he looks any different then. We were really hoping his lungs would look better. The doctors keep telling us that his lungs sound so much better than when he got here 3 weeks ago, and the CT scans lag in showing good progress, but I still was hoping they would look a little better. This is going to delay everything by at least 2 more weeks. I was thinking the transplant would happen some time in the next few weeks, but now it looks like it will be at least another month, or more, depending on the next CT scan.
They might try some other tests to see how his lungs are doing, including a lung capacity test. Since he cannot blow into one of those lung capacity things, I don't really know how they will check it. That test might give them a better idea of how his lungs are actually doing. The doctor said what looks like infection might actually be some scar tissue. That stil concerns me since I know there shouldn't be scar tissue in his lungs.
There are also some other medicines they might try to help reduce the parainfluenza. The doctors need to all talk together to figure out the best course of action from here.
Now the not so good news. The CT scan shows that there is no change at all in the infection in his lungs. So now we wait for at least 2 more weeks to do another CT scan to see if he looks any different then. We were really hoping his lungs would look better. The doctors keep telling us that his lungs sound so much better than when he got here 3 weeks ago, and the CT scans lag in showing good progress, but I still was hoping they would look a little better. This is going to delay everything by at least 2 more weeks. I was thinking the transplant would happen some time in the next few weeks, but now it looks like it will be at least another month, or more, depending on the next CT scan.
They might try some other tests to see how his lungs are doing, including a lung capacity test. Since he cannot blow into one of those lung capacity things, I don't really know how they will check it. That test might give them a better idea of how his lungs are actually doing. The doctor said what looks like infection might actually be some scar tissue. That stil concerns me since I know there shouldn't be scar tissue in his lungs.
There are also some other medicines they might try to help reduce the parainfluenza. The doctors need to all talk together to figure out the best course of action from here.
Tuesday, September 4, 2012
More Family Visitors
Today, Kelly and Cody (Adam's siblings) came to visit Cael. They came all the way to Texas to pick up our dogs to take back to Indiana until we can be home permanently again. They stopped by to visit us for a few hours. It is the first time either of them have ever met Cael. As Adam says, he approved of them. They seemed to enjoy meeting Cael and getting a chance to play with him a little bit. Even though he got sick while they were here, I think he did very well. He was very happy and playful.
They brought lots of presents for him from all of the family. Thank you everyone! We are going to have so much stuff to move out of here when we finally leave!
Cael moves too quick, so he ends up blurry in most pictures. :)
They brought lots of presents for him from all of the family. Thank you everyone! We are going to have so much stuff to move out of here when we finally leave!
Cael moves too quick, so he ends up blurry in most pictures. :)
Not a great day so far
Cael has been having a rough time today and last night. It actually started yesterday morning when he threw up all his medication right after taking it. We didn't think too much of it because he was coughing and what came up was very mucousy. We just assumed he threw up because he was coming and had a lot of mucous to cough up.
Last night he threw up again. That time was about an hour after eating, and it seemed like he threw up all the formula he had drank. He has never thrown up like that before, so we were a bit concerned. Plus, yesterday he didn't eat very well. He took a very long time with every bottle and didn't eat as much as normal.
Today hasn't been any better. He is still taking a very long time with each bottle, and he isn't even taking as much with each meal as he normally does. Plus he threw up again this morning. This one was particularly bad. He was sitting on my lap and threw up a little bit. I put him in the crib to clean him up, then he started choking. Adam ran out to get someone, and as soon as he got back in the room, Cael projectile vomited all of the formula he had eaten an hour before.
The doctors are checking to see if he still has C Diff, which could be causing his stomach to be upset and make him throw up. The medicine he is taking for C Diff could also be making his stomach upset. If he still has it, they are going to try changing his medicine to see if it helps it go away.
As for the troubles eating, an occupational therapist is going to come and watch him eat to see if he is having troubles breathing and swallowing, or if he needs a different bottle, or what. They are also going to look at the CT to see if he looks any worse, and maybe that is causing some breathing problems, which is causing eating problems.
On the bright side, Cael is still smiling and happy as ever.
Last night he threw up again. That time was about an hour after eating, and it seemed like he threw up all the formula he had drank. He has never thrown up like that before, so we were a bit concerned. Plus, yesterday he didn't eat very well. He took a very long time with every bottle and didn't eat as much as normal.
Today hasn't been any better. He is still taking a very long time with each bottle, and he isn't even taking as much with each meal as he normally does. Plus he threw up again this morning. This one was particularly bad. He was sitting on my lap and threw up a little bit. I put him in the crib to clean him up, then he started choking. Adam ran out to get someone, and as soon as he got back in the room, Cael projectile vomited all of the formula he had eaten an hour before.
The doctors are checking to see if he still has C Diff, which could be causing his stomach to be upset and make him throw up. The medicine he is taking for C Diff could also be making his stomach upset. If he still has it, they are going to try changing his medicine to see if it helps it go away.
As for the troubles eating, an occupational therapist is going to come and watch him eat to see if he is having troubles breathing and swallowing, or if he needs a different bottle, or what. They are also going to look at the CT to see if he looks any worse, and maybe that is causing some breathing problems, which is causing eating problems.
On the bright side, Cael is still smiling and happy as ever.
Monday, September 3, 2012
Visit from Barbie
My sister, Barbie, arrived last night for a visit. She and I stayed at a hotel for the night. It was so nice to sleep in a real bed. Then this morning she came back to the hospital to spend some time with Cael. He wasn't too sure about her at first. He has been so good with all the nurses and doctors that come in, to didn't expect him to be unsure about her. However, he has also gotten so used to all these people with masks and gowns and gloves on. She wasn't wearing those thing, so he seemed a little unsure about her. He would look at me and smile, then look at her and lose it. Then look at Adam and smile, then look back to her and lose it. By the time she was leaving, they were buds, though. He was smiling at her and letting her hold him with no problems.
Barbie took us out for lunch. It was the first time we have both left Cael at the hospital. The nurse watched over him while we were gone. We weren't gone for too long, but it was nice to have a meal that wasn't fast food or hospital prepared. Then Barbie got to spend some more time with Cael. They read a book and played for a little while. Before Barbie had to leave, she even took me to get a pedicure. I felt so spoiled the past 24 hours. I got to see my sister, sleep in a bed, go out for lunch, and get a pedicure! It was a very nice and much needed break from all the hospital stuff.
It seems like Cael wanted to punish us for both leaving him at lunch. So while we were gone, he took a nap. But while he was napping, his oxygen level dropped down to 85%. Usually he is at about 93 while sleeping. The doctor said she didn't want him to be below 92%, so he is now back on the oxygen. He is at less than 0.25 liters, so it isn't much.
He also is having some problems with eating today. We have been having more and more problems with him not wanting to eat, but today seemed particularly bad. We are going to talk to the dietician tomorrow about whether he should try a different type of formula, or if maybe it is just that he was having troubles eating because of his breathing troubles. I just want to make sure he is eating enough and gaining weight appropriately.
Tomorrow, Adam's brother and sister should be here to visit us for a bit, then take our dogs back to Indiana, until we are able to be home again. Hopefully I will be able to be here so he can get some time away with his siblings like I did today with my sister.
Barbie took us out for lunch. It was the first time we have both left Cael at the hospital. The nurse watched over him while we were gone. We weren't gone for too long, but it was nice to have a meal that wasn't fast food or hospital prepared. Then Barbie got to spend some more time with Cael. They read a book and played for a little while. Before Barbie had to leave, she even took me to get a pedicure. I felt so spoiled the past 24 hours. I got to see my sister, sleep in a bed, go out for lunch, and get a pedicure! It was a very nice and much needed break from all the hospital stuff.
It seems like Cael wanted to punish us for both leaving him at lunch. So while we were gone, he took a nap. But while he was napping, his oxygen level dropped down to 85%. Usually he is at about 93 while sleeping. The doctor said she didn't want him to be below 92%, so he is now back on the oxygen. He is at less than 0.25 liters, so it isn't much.
He also is having some problems with eating today. We have been having more and more problems with him not wanting to eat, but today seemed particularly bad. We are going to talk to the dietician tomorrow about whether he should try a different type of formula, or if maybe it is just that he was having troubles eating because of his breathing troubles. I just want to make sure he is eating enough and gaining weight appropriately.
Tomorrow, Adam's brother and sister should be here to visit us for a bit, then take our dogs back to Indiana, until we are able to be home again. Hopefully I will be able to be here so he can get some time away with his siblings like I did today with my sister.
Sunday, September 2, 2012
My sister is here!
My sister is here. I am so excited to see her! And I even get to stay in a hotel for the night with her. It is the first time in 5 1/2 weeks that I have slept in a real bed.
Sweet dreams for me tonight. :)
Sweet dreams for me tonight. :)
Quiet Day and Visitors Coming
Cael is still off the oxygen! It is the first day in over 5 weeks that he has not needed to be on oxygen. It is so nice to only have one cord to contend with for now (the pulse ox on his foot). We don't get tangled up every time we pick him up. He has been very talkative today. Mainly just mamamama. That is his main sound right now. But he also has been squealing a lot, too. Adam swears he has said dada before, but I still haven't heard it.
We've been having a quiet weekend so far. No big tests since Friday, and he shouldn't have any more until Tuesday, with the CT.
Cael's Auntie Babbz (my sister) is coming to visit tonight! She hasn't seen him since he was 2 weeks old, at Chirstmas time. I am so excited to see her and for her to see Cael. On Tuesday, his Aunt Kelly and Uncle Cody (Adam's brother and sister) should be here, too. They have never met him in person befor. Just on Skype. He's getting so many visitors from Indiana this week!
Adam's Aunt Pam and Uncle Joe stopped by Friday with some treats and gifts for all of us, but weren't able to come in because of being sick recently. They are very strict about visitors being healthy. No getting patients sick! Hopefully they will come by again and visit when they are better.
We've been having a quiet weekend so far. No big tests since Friday, and he shouldn't have any more until Tuesday, with the CT.
Cael's Auntie Babbz (my sister) is coming to visit tonight! She hasn't seen him since he was 2 weeks old, at Chirstmas time. I am so excited to see her and for her to see Cael. On Tuesday, his Aunt Kelly and Uncle Cody (Adam's brother and sister) should be here, too. They have never met him in person befor. Just on Skype. He's getting so many visitors from Indiana this week!
Adam's Aunt Pam and Uncle Joe stopped by Friday with some treats and gifts for all of us, but weren't able to come in because of being sick recently. They are very strict about visitors being healthy. No getting patients sick! Hopefully they will come by again and visit when they are better.
Saturday, September 1, 2012
Weaning off oxygen
Today they tried taking Cael off of the oxygen all together. It has been successful so far. They want his oxygen level to be above 91%, and even without wearing the oxygen, his oxygen level has been around 93-94%. Hopefully that will last through the night and continue being high.
They wanted to get him off the oxygen before the transplant, but weren't sure if they would be able to. It looks like that mig be a possibility now. I think that also means his lungs are clearing up a little bit. The reason his oxygen level was low was that he wasn't able to get as much oxygen in his lungs because they were so full of mucus from his infections. So if he is getting more oxygen I assume that means there isn't so much infection in there getting in the way.
He has another CT scan on Tuesday, so we will see for sure if he is getting any better. They told us that the scans usually lag behind how he is really doing. So even if the scan still shows some infection, he could still be doing better. They just want to compare the one from 2 weeks ago to the one Tuesday to make sure it is at least getting better.
They wanted to get him off the oxygen before the transplant, but weren't sure if they would be able to. It looks like that mig be a possibility now. I think that also means his lungs are clearing up a little bit. The reason his oxygen level was low was that he wasn't able to get as much oxygen in his lungs because they were so full of mucus from his infections. So if he is getting more oxygen I assume that means there isn't so much infection in there getting in the way.
He has another CT scan on Tuesday, so we will see for sure if he is getting any better. They told us that the scans usually lag behind how he is really doing. So even if the scan still shows some infection, he could still be doing better. They just want to compare the one from 2 weeks ago to the one Tuesday to make sure it is at least getting better.
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