September 19, 2017

Discharged

So, last night his potassium was getting just a little higher than normal, so they took him off the IV potassium and the levels have returned to normal.

They have had to poke him many times to test his potassium through these last few days.



He is holding down food and all his formula. Hopefully he can continue to keep himself well hydrated.

Other than working on hydration and nutrition, hospital stays can become boring very quickly. So, here are some pictures and videos of hospital fun XD.










The tree with legs outside is always kind of creepy lol. 

Azer won a hat from a game he played through the Children's Network TV. The clowns even came by and tried to barter with him using some cold, hard, giant sized cash. 



We just saw the doctor, and he gave the all clear for going home. It will be great to be home tonight. We will be going home with oral antibiotics to finish the course he started Tuesday. The doctor wants Azer to not exert himself too much for a few days to help his body recover. The doctor agreed it was just a combination of vomiting, antibiotics, being out in the heat, and being unable to keep down much formula that caused this to happen.  We really have to push for hydration now more than ever. The doctor we saw has had a running joke with Azer through the years that when Azer is a famous MLB pitcher, there's going to be Mom running onto the field, halting the game to remind him to drink his Gatorade. But, truly, I think Azer can see now the worst than can happen from being dehydrated. 

We are outta here!










September 18, 2017

Update

So the dietician felt like this incident is unlikely to occur again, but gave us a list of foods we can add to his diet to add potassium. Apparently, with everything he normal eats and drinks, formula included, he is meeting half of his potassium requirements. The frustrating thing is he would need about 5 servings of fruits and vegetables a day to meet it. She basically said push it more especially on days he's going to be outside and active.

He did his PFT's a little while ago and he blew higher than he did Tuesday and his lungs are clear. 


The funny thing (not really funny) is through the period of this day, Azer has had a full bottle of Gatorade that everyone keeps urging him to drink. The dietician came in, and noticed it had maybe a sip taken out of it after hours had passed. She told Azer, your mom is just going to have to put it through your G-tube! 

Day 2 in the hospital


Azer ended up having to get stuck multiple times in the fingers and had several butterflies in his hands. The poor nurse was trying to get blood to test his potassium, but he kept clotting and she was having a difficult time.



He finished his night feed for the first time in a few days and held it down. He also did his morning feed and feels pretty good. 

We were a little disappointed that we asked for hand CPT last night, and the RT still used the Vest. So, this morning the RT for today was questioning why we did hand CPT. Both Azer and I said the Vest does almost nothing to help him clear his lungs. The RT had me show him how I do CPT and was impressed. He recommended something called a IPV as something Azer could possibly use in college. I've read about it before, and sounds great, but when I asked a doctor about it, they said usually it's not prescribed for home because of the risk of lung bleeds. 

Our dietician came in and will give us a list of foods that are high in potassium and also give us a daily fluid gole. She believes this incident might have been from "the perfect storm" conditions. We had a cold front, and then it's been suddenly hot for the past week. The dehydration probably started from last Thursday's baseball game, Friday he had a tough athletic period and had to run 8 laps in the afternoon heat, and then Saturday he pitched almost the entire game. He then played outside for quite a bit of the day. For a few days, he hasn't been able to do much of his formula feeds, has been nauseous and has vomited a few times as well. All these factors likely contributed to his dehydration. 

One of the nurses came in and said that Azer's blood work from today compared to yesterday's is strikingly improved.  The results of the EKG weren't too concerning, but his QT was prolonged. The nurse also said Azer's creatinine and BUN was high yesterday, making his kidneys work hard. They said that his blood counts were high because of it being so concentrated. So, Azer was definitely in a dangerous place, and I'm glad we brought him in. We might be able to go home tomorrow if he keeps looking good, but we are definitely going to have to work on keeping his potassium and hydration up especially if he is going to be outdoors. 

September 17, 2017

Feeling better!

He's feeling a lot better, was able to urinate, and ate dinner and seems to be holding it down!

We're not sure how long he'll be here, but we'll probably find out in the morning after PFT's. They will test his potassium and electrolytes periodically through the night to make sure they stay stable.


Cystic Fibrosis can be hard on little sisters too... 

Admission

So, here we are at the ER. While we've been here, his symptoms improved over a few hours. They did an x-ray and saw his lungs are slightly better than they were last week. 

His sodium levels were pretty good. Unfortunately his potassium was low, and they have started him on IV fluids with another bag of potassium. They have decided to admit him so they can continue to administer potassium. They have him hooked up to a heart monitor. The doctor said with his potassium so low, if we took him home and his levels stayed low, he could go into cardiac arrest. At this point, I don't know why it's so low. The only answer the doctor could give us was it might be from the vomiting. 

The potassium burns going through his iv. He was in a lot of pain and wanted them to stop it. The nurse brought in cold and heat packs to help. They also are running additional fluids through his IV to help dilute it.