The Day After Surgery

Yesterday started out pretty tough. He woke up in the middle of the night panting and unable to breathe easily. Some albuterol helped a little, but it seems that all the bleeding from his sinuses ended up in his lungs. At first, he sounded so bad, and was having such a hard time breathing, I was tempted to go ahead and bring him back to the hospital. We put in a lot of work yesterday, doing hand CPT every couple hours. It started out pretty rough. Coughing and laying down hurt his nasal area. Most of the day, he was coughing up a lot of old blood and mucus. Luckily, his nose wasn't bleeding much at all, so we were able to do his normal nebulizer medicines.

Because of those splints stitched inside to his septum, nasal rinses have been challenging, and painful. The doctor told us that if we didn't keep trying to do the rinses, the blood in his sinuses could scab over and dry and cause scarring. It took most of the day to use one bottle up, but it did flush a lot out.

He ate very little, so we did extra formula boluses to supplement the calories he wasn't eating. He felt nauseous after most boluses so he took it easy for most of the day.

Later on in the afternoon, the mucus he was coughing up was becoming less bloody, and more clear. He definitely was starting to feel more like himself. He slept sitting more upright last night, so while this is more comfortable for his head, all the drainage ends up in his lungs. So, we plan to continue with frequent hand CPT sessions for the next week.

Heat Exhaustion And CF

This past weekend, Azer's team had a tournament. On Saturday, they had two games. He pitched several innings. He felt alright at the end of the day, but hadn't drank enough fluids and felt very tired.

Sunday, they played one game. He had started his morning bolus a little later than usual because he slept a little later. By the time he needed to start warming up on the field, he said his stomach still felt full, and he sat in the dugout to avoid vomiting. He had pitched a little while, and drank mostly water in the dugout between innings.

That evening at home, he still hadn't drank much more. We started to run some Gatorade through his G-tube, and he vomited it all up. He said he felt very tired. He ate a small amount of food for dinner. In the middle of the night, he ended up vomiting up his night feed. He said he was still feeling physically exhausted.

After communicating with the CF clinic, we decided to skip a bolus feed, and run Gatorade through his G-tube throughout the day.

We have been in the ER before due to dehydration. Apparently, in Cystic Fibrosis you can have heat exhaustion caused by low sodium in the blood. So, by drinking water in addition to aggressively sweating in hot weather, the salt in the body is not being replaced and this can cause hyponatraemia, which is having a low sodium level in the blood.

http://understandingcysticfibrosis.blogspot.com/2007/07/understanding-and-preventing-heat.html

PICC Line is out!

Yesterday was Azer's follow up appointment with our CF doctor. We have been working hard to get his lungs clear by running in the mornings again (until he sprained his ankle Tuesday lol), and manual CPT. The GI doctor was able to get his reflux under control to the point where he has had almost no trouble with it at all, so coughing all the junk out has been much easier. Doing IV's at home is always a bit challenging, but in the end, it is always worth it for him as he gets to play with his friends and ride bikes. Of course, there were moments of longingly looking at the swimming pool. 

We have been very vigilant about keeping up with the bolus feeds, and saw the rewards of our labor. He is nearly 77 lbs, and for the first time in his life, he is finally over the 75 lbs! He also grew about a quarter of an inch in a month. The doctor still wants to see his weight closer to the 50th percentile, and hopes if we get his weight higher, that his height will inch back up towards the 25th percentile. 

He got a 92% on his PFT's. I was surprised it was lower than when he was in the hospital. The doctor took time to explain that because he got taller, the calculations for lung volume can change slightly. I feel like no mater how many times they explain what all the other numbers on the PFT's mean, it still never makes complete sense! 

The doctor felt like Azer had spent enough time on IV antibiotics to have his PICC line removed yesterday. 

Because Azer has been playing a lot outdoors, he has been sweating too. This can cause the sticky dressing to come lose, and expose the wound to infection, so we've had to use extra dressing to keep it on.  The removal of the actual catheter isn't painful at all, but removing the dressing (or any dressing changes) can be very painful. It is much worse than removing a band-aid, as the special dressing they use is meant to stick as well as stitches. Cleaning the area stings as well, because removing the bandages does cause some skin irritation.

We are going to do another week of oral antibiotics just to make sure that he stays clear for a good while. 

Luckily, his sprained ankle is healing quickly, and he was able to get some batting practice in for the first time in two weeks!  

Morning Bolus

Azer showing you all how he does his morning bolus ... all by himself!

Again....

He threw up again this morning. It was some of his feed, exactly when his feed ended this morning. I ran it pretty slow. It ran over a period of 10 hours. And still ...

He didn't get his afternoon bolus yesterday because it was straight to the pediatrician. So, he definitely wasn't too full.

The pediatrician was a waste of time, but I knew that. It was mostly to check his weight. Which pretty much is the same since last month. That is very frustrating, with all these extra bolus feeds during the day. Maybe he's not gaining because he's hardly eating any food. Who knows. I sure hope the GI doctor tomorrow has some answers.

Vomiting ... Again

He threw up at the end of his feed last night again. Again, it appears to be reflux. He kept trying to swallow hard to keep it down but just couldn't hold it. He kept his morning bolus down, but I've been stressing about it all day.
I made an appointment after school for the pediatrician just for peace of mind. While driving there, I got a call back from the CF clinic. They want him to see the CF GI doctor Friday morning.
Well, I just continued driving to the pediatricians office. I was almost there anyway. His weight is 50 lbs. Same as last month. So not cool.
While lifting his jacket off, the nurse was all, "oh, I didn't know he had a button. He still uses that? I can't believe he still uses that". I guess she assumed he had one as a baby. As if I felt like explaining to her why he has a g-tube.
So, we'll see what the pediatrician says. I feel bad for taking Azer's afternoon away from him just to sit in yet another doctor's office.
Sent formed my iPhone
Visit Azer's CF Website
http://www.azerscfwebsite.com

A Little Food, A Little Formula

Well, since I started the new bolus feeding (one and a half cans during the day time), he began to eat next to nothing. For a few days, he literally had nothing by mouth. Not even a glass of water. Everything was going into the tube. So, to ease my mind, I called the docs Thursday. The plan is to give a half can in the morning, and a half can in the afternoon. So, I tried that yesterday, and he actually had a few bites during dinner and a glass of milk. So, I'm hoping we can find middle ground, where he gets enough formula to gain weight, but not to the point where he can't enjoy any food.

Who knew it could be so complicated to gain weight? G-tube does not equal simplicity!