Heath's Journey 1/30/10

mujul79's picture

So frustrated with Wellcare!!! or DFAC. I am not sure but I tried to get Heath a medical needs type of help because his old Wellcare was turned off due to income. That was on Dec 18th it should take 30 days. On Jan 14th we had a change in income and I had to go report that. And he got bumped off the medical help list because you can only get that if you make to much money and I was told based on my new income all 3 would have Wellcare in 45 days. Anyway Heath had test yesterday so Thursday I went to the office and was told his stuff was still pending so testing yesterday was only logged under his Cigna insurance and not 100% coved.Yet today I get a welcome to Wellcare package for Heath and not the other 2 and no Wellcare insurance cards or anything for anyone. I am thinking in order to get this stuff in the mail today it should have been on yesterday for the test right? Any way someone will be getting a phone call Monday.

Jan 11th Heath was seen at the and CF clinic. We saw the ENT, GI and lung Dr.'s. Everyone wanted him to have some testing done so more things where added to his surgery and a swallow study where added as OP for before surgery. ENT stuff is the same A&T and tubes, GI wants to rule out reflux, and his lungs will get a scope and esophagus too to make sure everything looks normal while he is asleep to help rule out more causes of the apnea.

As to his hospital test/visits on Jan 29th.

He had a chest x-ray looking to see if he has Bronchopulmonary Dysplasia (BPD)because he has been on the 02 over a year now.


I don't know when we will have the x-ray results.

He also had a Mod swallow test. Swallow study says he is swallowing fine once he gets things to the back of his mouth. His issues are with his tongue and chewing skills. He has now been referred to have speech oral visits to work on his mouth motor skills. So we are adding another specialist to Heaths medical team. Speech Oral Therapy. So happy he is getting the services he needs but this will be another weekly trip to Atlanta unless Babies Can't Wait has someone they can send to the house.

His surgery is also all set for the T&A on Feb 16th. While he is under he will also get a new set of tubes in his ears (Left one has fallen out and the right one is not in right anymore) And another ABR to see if he has hand any change in his hearing. Also a scope of his airway will be done to see that everything looks normal. And a PH prob is going to be done to see if he is having reflux. He is expected to stay over night in the PICU and up to 4 days in the hospital depending on how well he eats after surgery and if he is bleeding or not. They have to keep close eye on his recovery after surgery because of his history of histoy and all the meds.

Other things going on.

Jan 11th he had now ear molds made (red and white)for his growing ears and some settings where changed on the aids. We will get the new molds in a few weeks but already I can tell he likes the new settings and is keeping them in without pulling them out as often.

He is starting to talk. Words he says are DONE, Mama, Dada, and I think I heard him try to say No to me yesterday. It is just amazing how fast he is picking up ASL too and signing to us.

Jan 27th he had cast of his legs taken. They will be turned into molds for making him leg braces. The braces will help with his ankle strength and help him stand longer so he can learn to walk and also straighten out his clubbed feet while he standing, so they start to turn the way they should be.

PT is going well he is starting to curse the sofa for rewards of cereal and the goal is to have him walking behind his toy after he gets his braces and have him fully walking on his own in 6 months.

I don't think I forgot anything. I try to keep this updated once a month if not more.


Alissa_Sal's picture

Submitted by Alissa_Sal on

I'm so glad that you updated. I have been thinking about Heath and your family lately, and was very pleased to see that he seems to be doing well. Talking! What a big boy! Anyway, just wanted to let you know that your family is in my thoughts and that I wish you all the very best and have been following your journey from the beginning. All the best.