November 14, 2017

MRI for Growth Hormones

One of the requirements we had to meet before starting growth hormones was to get a brain MRI to make sure there isn't a tumor on Azer's pituitary gland.

He wasn't a big fan of the over-sized gown. 
It was a day where is lungs sounded a bit junky. Luckily, he was able to lay still for the majority of the scan, and they allowed him to cough in between the frequency scans. I was able to sit near him where he could see me, to try to relieve the claustrophobic feeling. When it was over, he sat up and he said he felt dizzy. The technician said this was from the magnetic field from the MRI. The feeling passed quickly.

We had a meeting a few hours later, so there as no point in driving home. To help pass the time, Azer decided to stand near the glass windows where you can see people on the lower floors, and "dab". He was seriously delighted when a man dabbed back!




The results of the MRI came in, and the doctor reviewed it. It shows that his pituitary gland is smaller than normal. The doctor isn't concerned about this (we have questions), and has given the go-ahead for growth hormones, pending insurance approval!

October 31, 2017

Physical Therapy Visit

It has been about a month since his last PT session, so Azer had a few things to work on today. (I snitch on Azer and tell her what he has and has not been doing.)  As punishment, for extra fun, he did plenty of core exercises and some knee exercises for his Osgood-Schlatter Disease which has been bothering him.



Since it is Halloween, they decided to do their planks wearing, what else, but Poo Emoji hats! Lol



This last pic is from a few months ago, but I think it demonstrates his therapy sessions the best haha. She does a fantastic job motivating him, which is a job in itself to motivate a teenager!


October 14, 2017

CF Clinic



Thursday was another normal CF Clinic day. Azer blew about 5% lower than he did when he was discharged from the hospital in September. Ever since we had a cold front, his cough has increased as well as mucus production. About a week ago, his shoulder pain returned, but it only lasted about a day. The doctor didn't feel like it was time for antibiotics yet. She said we should restart his Nasonex to help his allergies out a little bit more.

His weight was exactly the same as well as his height. He hasn't grown in height for the majority of the year. The results of his Growth Hormone Test showed that his hormones for growth are too low to allow his body to grow. Azer wants to pursue the Growth Hormones, so we will be started them soon, despite the increased risk of CF related diabetes. We talked with the dietitian and GI doctor about the risk, and all people with CF have a 60% of getting CFRD at some point.

They retested his potassium as well as the rest of his electrolyte panel and it showed everything is right where it should be. The dietitian assured us that worrying about his potassium should be on the lower end of things to obsess over. So, as long as he does his night feeds, it should stay stable.

September 22, 2017

Growth Hormone Stimulation Test

Last night, Azer felt good enough to play baseball. He stayed in positions that were less physically demanding. He pitched to the very last batter and got the last out of the game.







So Azer ran his G-tube feed on a fast setting last night so he could get his 3 cans in before midnight (really pushing it since Sunday). After we got to the hospital this morning, they told him he could have as much water as he wanted.

I had to remind a few nurses about putting gowns and gloves on before they worked with him. I told them it protects him as well as the other patients.

The nurse was able to get an IV started very quickly. Then she gave him a Clonidine tablet which is usually for blood pressure. She said this is supposed to neutralize something in his body and that it can also make him sleepy. He was in a recliner with a warm blanket and pillow. They said they would come back and test him in a half an hour.




He said his mouth and eyes felt dry from the Clonidine. He was also very sleepy, and was able to nap during much of the time.




They came in 30 minutes after they gave him the pill to take a blood sample. About 30 minutes after that, they started l-Argenine by IV, after which the IV pump switched over to saline solution to help keep him hydrated. They took his vitals and blood every half an hour.




We will probably know the results and what possible direction we can take in a week. 

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!