Tuesday, March 17, 2015

Allergy and Nephrology Appointments

Good Morning Everyone! It's been a little while since I've updated. Things have been running smoothly. Ava had appointments in Iowa City yesterday. There were a few things I was concerned about and wanted further testing.

I myself battled a very bad chest cough and cold the last few weeks but am finally back to normal. I prayed daily that no one else would get it and God answered my prayer as no one did!

Ava never complains of doctors appointments. She's such a trouper! We even had to leave at 6:30 in the morning. Almost everyone commented on her pink hair and how tall she is for her age. I'm thrilled that she is healthy!



First we saw Dr.Diana Bayer with Allergy/Pulmonary. Ava is "allergic" to many pain medicines, a few regular medicines and an antibiotic. I wanted to know if they were true allergies or if we could test her to see if she could tolerate them again if need arises? The doctor was quite sure that her reactions to the pain drugs had to do with "the typical" side effects most people get so she thought that if Ava needed them again in the future they would be "okay" to given. She explained that drugs like Morphine, Fentanyl, hydromorphone and other in that category normally cause itching. I understand this but when these drugs were given to Ava it was beyond bad itching. In the PICU she nearly scratched her nose raw, even after they gave her antihistamines to counteract the effect. There are a few other drugs that do odd things to her as well so we just decided to stay away from them and continue to call them "allergies" on her chart. A SEVERE allergy is one where your throat swells, you have trouble breathing or your blood pressure goes up or down drastically to the point of causing death. So she doesn't have THAT kind of an affect but with her the effects range from slow heart rate, itching, rash, burns, desaturations, and restlessness. ALL of those are very unpleasant. So with Ava we just do what WORKS well for her!

She had to do another Pulmonary lung function test.... again not one of her favorite things to do. Here is her doing her last one. She still hasn't got it down fully but she is doing much better. They are very hard even for an adult to do. First you have to breath normally then wrap your lips around a tube like thing, next you take a deep breath in and blow and blow all the air out of your lungs for about 15 seconds (without taking a breath) THEN take a deep breath in. It is harder than it looks. She had done about 4 before this one so she was pretty worn out.

video

There is a lot of waiting in between doctors and tests.... she takes her iPad and keeps herself entertained. She doesn't fit on the table anymore! Her legs are just too long.


Next doctor we saw was Dr. Diana Zepeda-Orozco from Nephrology. She deals with the kidneys. Ava had severe kidney issues in the PICU when she became septis in 2009 but once that was taken care of she didn't have any other issues. However, Ava has never been able to stop using pull-ups at night. It worries me that her bladder or kidneys may have an issue. She gave a urine test and that came back normal. She also did blood work. We will be getting those results soon. Ava also had an ultrasound of her kidneys yesterday. The doctor thought the ultrasound looked fine to her. She wants us to make Ava use the bathroom every three hours and limit her water at 7 pm.  She also wants us to start waking her at night to do potty. (All this we have tried with no luck.) I hate waking her. She is such a hard sleeper and then once awake she can't go back to sleep. But we will try and see. If after 4 months things are the same she will then have to go to a urologist for further testing. 

We ran into Josh, Ava's surgical nurse practitioner as we were almost done. It is always so good to see him. He has been through this entire life journey with us. It brings so many memories back and each time I see him I see hope in his eyes. If every person could have such an amazing NP as Josh this world would be a better place!

The children's hospital is still under construction so each time we get a picture. 



All in all a good visit. It was totally cool that when we stepped outside it was almost 80 degrees at 1:00. We ate at Ava's choice... Olive Garden! It's extra special when Brian can go with us. Ava adores her Daddy. Ava is doing well in school and loves her friends and teacher. It's awesome to see her so happy. A week ago I was going through Ava's blog... sometimes I just can't believe that THIS little girl has been through so much. We are so blessed and give God all the glory.

Thanks for checking in on Ava. As always we appreciate your love, support and prayers!

~The Helmick