June 19, 2015

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!  

June 11, 2015

Reflux, blech!

So, our GI doctor has been out of town, which was part of the problem of treating his reflux in the hospital. Yesterday, his reflux was terrible, and he couldn't hold it down about an hour after his afternoon bolus. It was a little scary, with the poor kid retching and crying in pain. I can't deal with vomit, so he was trying to shoo me out of the bathroom. He was so bloated after, even though his stomach was pretty much empty.

I called the CF Clinic, and was very grateful to have someone answer the phone (do to some awesome people :-) and she was able to get a hold of the GI doctor quickly, and we made a few small changes to make it through the night. We went to clinic this morning. We didn't do another PFT since we had one just a few days ago in the hospital. He somehow managed to gain a pound and grew a bit.

We increased dosages of a few medications (bethanechol and zantac), added some new medications, some to help the stomach empty, some to help the stomach hold food better, and some to try to coat the irritation (Carafate). I learned today that when he has a lung flare up, it can also cause inflammation in other parts of his body, and can cause his GI system to work even slower than it normally does. So not fair for someone who needs to eat more when he's sick! The doctor mentioned a new type of Proton Pump Inhibitor that has helped a few other patients. It might be tricky to get it, but we're hoping.

We had a dressing change on his PICC line today. We plan to do one next Thursday, or possibly have it taken out! We might get an endoscopy done when the IV's are over to make sure there aren't any other issues causing his reflux and tummy troubles.

June 10, 2015

Hospital at Home

We were discharged last night with all our IV medications and supplies, and we had a successful night. This time, instead of having a pump (or those horrible gravity fed IV bags) we have infusion balls. Many other CF moms have mentioned how easy they are to use, and they really are. There is no priming, adjusting dosage, or air bubbles to prime out. It still is exhausting waking up multiple times during the night to change medications, flush the IV, and disconnect his G-tube. We also have 4 breathing treatments during the day. It is tiring but well worth being at home.

We were able to jog this morning, although he had very bad reflux before and during it. I feel frustrated that it isn't any better, or perhaps worse since we were admitted but I am hoping it will be resolved soon.

June 9, 2015

Going Home!

Yesterday, Azer blew 94% FEV1 on his PFTs. After only a few days on IV antibiotics, his lungs have improved considerably, so the plan is to continue the IV antibiotics at home. They are also waiting to see if he cultured any Aspergillus antibodies. His IGE level was elevated but not considerably high for him. His CT scan on his sinuses came back. Apparently, they are quite blocked and there is scarring and thickening. He had no obstructing polyps. The plan is to do a special sinus nebulizer after we are finished with the IV antibiotics.

It seems like the reflux hasn't really been addressed yet. The increased Zantac hasn't improved things. The latest I heard was we are going to restart the Nexium and continue with the Zantac.

He is ready to GO! 

June 6, 2015

PICC Line placement successful

He did very well with Versed through the IV. The PICC line team did an awesome job like they usually do. They were able to do it in the room this time, which was comfortable for him.

When the Versed started to wear off, one of the technicians showed Azer where his PICC line was placed through the X-ray.

The good news is he says his lungs are already starting to feel clearer.

We had some time enjoying being out of the hospital room for a while too.

PICC Line soon!

They came in and looked for a good place to thread the PICC line in. Apparently he didn't need to be NPO, so since he hasn't had any food or liquids by mouth since midnight, he is going to eat now! 

He also got a CT scan done on his sinuses to check for polyps or blockages that may be affecting his lung function.

He is also getting breathing treatments 4 times a day.


Well, since we knew this admission was coming, we made the most of the time we had after school got out. We swam to our hearts content, and he played one more baseball game Thursday. He is missing a tournament this weekend, but hopefully he will be done with IV's before his World Series tournament in a few weeks.

We got here late last night. It always seems to take a while before a bed is ready (popular place lol). He got an IV last night, and has been NPO since midnight. We are hoping to get a PICC line placed soon so he has use of both hands. He can't play his Nintendo very well with only one hand. He is hungry since he hasn't gotten his morning feed. He is on IV fluids since he can't drink anything either.

So, they have increased his antacid medicine to see if that will make any difference. They are planning to do a CT scan of his sinuses before we go home. He only cultured sensitive Staph, but they are going to temporarily treat for Pseudomonas as well just in case it's lurking somewhere in his lungs.  He is getting two strong antibiotics through his IV right now. Apparently, his IV was burning last night, but seems to be alright this morning. I hope it holds up before he gets his PICC line.

June 1, 2015


Hey Ozzie, whatcha doing?
Azer: refluxing...

CF creates new words, apparently. The new antacid seems to not be working after all. This is the worst I've ever seen it. I feel like we're not able to do breathing treatments properly because it causes more reflux. I hope they'll be able to fix this in the hospital.

I don't know if this is part of the reflux, but he has had a lot of bloating and constipation lately. A few doses of Miralax seems to have thrown that into complete reverse. It is so hard to find a balance!