Breathing and Breathing Treatment

We had an eventful night last night, and day today.  He ended up back on the oxygen last night due to his oxygen level being down around 91-92. He woke up several times acting very uncomfortable, too. He was kind of whining and moaning a bit, and kicking and flinging his head back and forth. He was off the oxygen once he woke up, though, and was off it all day. I think he was pretty worn out after waking up so much last night because today he napped so well, and he fell asleep very early tonight, at 7:15! He seemed to be breathing much better through the day today, and tonight his oxygen levels are still up pretty high at 97 right now.

He has a bit of a rash on his tummy and his back. One doctor said it might be from him engrafting, but another said it probably wasn't that, but didn't have any better explanation. So I really don't know what it is caused by. It is just some redness and splotchyness. It seems to itch a bit, too. They are getting some topical cream to put on it to see if it helps out at all.

He had a chest X-ray last night and a CT today. The doctor said he thinks it looks a little better than the last one, but will wait until the radiologist analyzes it before he knows for sure.

The doctor is rearranging his breathing treatment schedule. Before it was at 6 AM, 2 PM, and 10 PM. Starting tomorrow it will be at 5 AM, 11 AM, and 5 PM. I have no idea how that is going to work since his napping schedule is currently a nap from 10 AM - 12 PM, then another from 2 PM - 4 PM during his ribavirin. Tomorrow I'm going to have to try and keep him up until 11 AM, which shouldn't be too bad, but the 5 PM - 7PM is going to be tough. I'll have to wake him up after the treatment and try to keep him awake for a couple hours, then let him go back to bed around 9:00 or so. I just don't think that is going to work. I'm not sure why exactly they are changing it, but I'm going to talk with them tomorrow about maybe making the evening one from 7 PM - 9PM so he can just stay asleep after the treatment.

I'm in for a rough day tomorrow with this new schedule, so I should probably go to bed early...not now, of course, it is only 8:45...but soon-ish, I think.

November 1 - Part 2

As I finished writing that last post, Cael was trying to fall asleep. He was having a lot of troubles, and was kind of thrashing around while he laid in bed. Then he woke up about 20 minutes later and threw up again. He was having some labored breathing and some retractions before he fell asleep, so they put the pulse ox on him to watch his heart rate and oxygen saturation. He was around 97 on his oxygen before he woke up and threw up. Then it was down at 92-93, but is now back up to 97. His heart rate is also a bit on the high side. So they are going to do a chest x-ray and a BBG (a blood test to see how much oxygen is in the blood). Hopefully nothing is too wrong.

He is laying in bed wide awake, playing with a toy, and definitely not sleeping.

I can't believe how quickly things go from being just fine to being like this.

November 1

Cael isn't feeling so well today. He threw up 5 times, and has been very sleepy all day. He got another platelet transfusion yesterday, then a blood transfusion today. After the first platelet transfusion, his platelet count didn't go up enough, so last night they decided he needed some more. All of the low counts are a result of the chemo. The chemo doesn't just kill the white cells, but also the red cells and the platelets.

He has blown blood vessels in both of his eyes. They are both on the outsides of each eye, only seen when he looks far to one side or the other. And he also has some little red dots on his head. I think it is called petechiae. Both things are probably caused by the low platelet count and should go away later.

He has lost a lot of hair. I don't know if these pictures really show it the best. Since he has lighter colored hair it is a little hard to tell. Once again, he is always smiling. Love that smile of his!           

He has a "big boy" bed now. He was hating his breathing treatments so much they suggested we get the bigger bed so we could lay next to him while he was getting the treatment so we could kind of hold him. Once we got the bigger bed, he didn't really have any more problems with the treatments. Go figure. But it is still nice to have the bigger bed because we can play with him in that bed, and we can lay down with him and get some good snuggle time with him. I love laying with him during his naps and just cuddling. I have to hold on to that. Before we know it he will be cruising around and not want to be held in one place!

Hair Loss and ANOTHER new room

Happy Halloween! I hope everyone had a lovely evening with their kiddos taking them trick or treating. They didn't do anything special here for Halloween. A few nurses dressed up, but nothing else. Cael was Tarzan! He even had a little "Cheetah" monkey to hold on to. Here he is from this morning. We couldn't leave the costume on all day since he kept getting the black fur in his mouth, but he had it on long enough for the doctors to see him and a few nurses. Everyone thought he was just the cutest Tarzan they had seen. :)

I feel like I did something so mean to Cael today. I lint rolled his head...literally took a lint roller and rolled it over his head several times to get off as much loose hair as possible. Yesterday, Adam ran his fingers through his hair and pulled out a few strands. Today, we woke up to a pillowcase full of his hair, and his gown covered in hair. He has lost probably 1/2 or more of his hair in just one day. I'll post another pic tomorrow, but the pics above in his costume are from just this afternoon. He lost his hair so quickly! I know he will still be cute without hair, and that it will all grow back, but it is so sad to see him losing it all.

We had to change rooms again today due to a broken water pipe in the other room. Late last night I noticed a lot of water in one of the cabinets by the sink, so they checked it and determined a pipe was leaking. Sigh...so we moved rooms. Again. This really better be the last move. I'm so tired of moving all our stuff. We have moved everything 5 times now, so we really don't want to do it again!

Cael is being a bedtime warrior tonight! He fell asleep in his Great Aunt Pam's arms around 8:00, but was woken up to change his dressing on his central line. He hasn't fallen back asleep and doesn't seem to have any intention of sleeping soon. He has never stayed up this late before! His breathing treatment starts now, so maybe the white noise of the fan will lull him to sleep.

Rolling, Clapping, Platelet Transfusion, and Hair Loss

Cael did lots of things today that he doesn't usually do. When the physical therapist came by, he rolled several times for her, which he would never do before. He has been able to for a long time, but just hasn't done it when we try to get him to. He also was trying so hard to get his knees under him. He usually just wants to stick his legs out to the sides and behind him like a little froggie, but today he actually seemed to be trying to get up into the crawling position.

He also has been clapping so much it seems he is applauding himself. So every time he claps, we clap with him and say "Yay Cael!" He just started clapping a few days ago, so we are pretty excited about it. During PT, when the therapist tried to get him to roll, he would just smile and clap, which seemed like he was trying to distract us from what we wanted him to do. lol

Tomorrow is Halloween! Cael has a cute costume, compliments of Adam's aunt Pam. I won't spoil the surprise. You will have to come back tomorrow to see a picture of his costume! He is so cute though. I guess all the nurses will dress up, too, which I bet all the kids really like. It's nice for them to get a little change around here.

Cael's platelets have gotten very low, so he is getting a platelet transfusion today. They were going to wait until tomorrow, and give him his IVIG today, but when he threw up this evening, his nose started to bleed and wouldn't stop. It probably bled for 30-40 minutes, just a little at a time. Platelets are needed to help blood clot, and since he is low, the blood just kept coming. So they decided to switch and do the platelet transfusion tonight and the IVIG tomorrow instead.

Now for the really sad news. It seems that Cael is starting to lose his hair. Adam said that every time he kisses Cael's head, a few strands come out. So he ran his fingers through it again, and sure enough, a few strands came out. One nurse said they usually end up shaving the kids heads when they start losing a lot of hair. Of course we were both hoping it wouldn't happen, but I'm not completely surprised. I don't know if we will shave his head. If it ends up really patchy, we might think about it, or if he is losing a lot so it is all over the place.

I guess some kids keep their eye lashes. Maybe he will be lucky and keep those. Everyone just LOVES his lashes. I'm sure he will still be the cutest baby around, even without his hair. :)

Calm Day

Not much going on today. I think it should stay pretty calm for awhile. Well, hopefully so at least. If it is calm, that means that there aren't any complications. His white cell count has gone down to 0.13, which means nothing to any of you, but we are looking for it to go down to 0.0. Normal is between 6 and 17.5.

Cael is still eating (Yay!), but not a whole lot. That's okay, though. We aren't pushing it. Since he is on TPN (IV nutrition), he is getting all of the nutrients he needs, so we just want him to get back to eating in his own time. I am hoping he will be back to a normal amount by the time we leave the hospital so he won't have to go home with a feeding tube or something. I don't really know what they would do if he wasn't eating enough when we left. He doesn't, nor has he ever, had a feeding tube, but I know those are common when they won't eat.

He was having some troubles with throwing up the past few days. He was getting an anti-nausea medicine to help, but it was stopped 3 days ago, the day before he was throwing up. So they have now restarted that, and he only threw up once today. He sneezed, and some came up. I don't think he would have thrown up otherwise.

Cael had physical therapy again today. I think he is stumping them a bit. They keep trying to get him to roll over or crawl to get to his toys, but he just looks at them and doesn't do anything. He is definitely able to roll from back to belly and from belly to back, but he only does so if he REALLY wants something, or is upset about being on his tummy. Crawling isn't really coming yet. He likes to stand, but doesn't walk yet either. He is just so content with wherever he is. He doesn't require a lot to keep him happy. So when they put his toys way away from him, he just looks at them, but doesn't really try too hard to go for them. They say he has the muscles, and they are pretty sure he has the strength, but he just doesn't WANT to crawl. lol. He is just too easily content. I guess I should be happy about that. At least he doesn't require constant distractions.

Appetite!

My mom called me this morning. Apparently, me not posting for a day might concern some people, thinking something is wrong. lol. Everything is fine. I just didn't get around to posting.

Cael has an appetite again!! Yesterday he ate 4 times! He still only took about 14 ounces, but the fact that he ate at all was awesome. Today, he has also been drinking. They started the TPN yesterday, which runs 24 hours a day. They will probably wean that down as long as he is eating consistently.

He absolutely HATES the breathing treatments still. He cried and screamed for an hour this morning until he finally calmed down. I even tried laying down next to him and rubbing his leg so he would know I was there, but that didn't work. I'm really hoping he gets used to it soon, seeing as he will be getting those treatments for a few weeks at minimum.

I can really tell that the physical therapy has been helping. Cael can sit so well now. He sits up so straight, and he can reach to the sides for objects without falling over. He definitely couldn't do that a month ago.

Last night, Jamie from my work brought us some super yummy dinner. My favorite food is mexican/ tex-mex, and we just can't get anything good around here. So she brought us some Chuy's, which is a mexican restaurant. Thank you!! We always appreciate meals that aren't fast food or hospital food.