Heath's Journey 4/15/09

mujul79's picture

On a whim 2 weeks ago my dad called and asked if he could come and visit. He arrived today and on a whim back I decided to join him on part of his trip to FL. So he will be here and I have lots to do to get ready to drive with the 3 kids to FL on Sat, we get home on the 22nd. DH can't come so this will be a road trip alone for me with all 3.

Other news. I posted that we got Heaths results from his sleep study. All they would tell me is that he had no change. That was the nurse, no Dr. ever called us. But then Apnea (supply company for his o2) brings us a new regulator and the therapist says to start giving him less of a o2 flow based on his new sleep results. WTF one says no change and the next says go from 1/2 to 1/4 flow. When I called back to find out what was going on the nurse said she could not give me that info without the dr knowing and that she could only tell me what she did. "no change from the study done when he was 3 weeks old"

Ok so the big question then is why the o2 change. I was told by the ENT nurse as directed by the dr. to make a follow up visit in 2 MONTHS!!!

After a few days I was having high stress and it was effecting everything I did in my life. I got in a car crash, I was always yelling at the kids and to me Heath seemed worse not better with his new neutralizer. I mean it works well and all but I was just so back to old feelings from when he was a new baby and us having no answers that I was not trusting any machine. I started to not sleep and things just sprinkled down from that point.

I did not even know what was bugging me until Friday. That is when it hit me that my issue was not having clear cut numbers and results from his study. So I called the ENT that had the results and asked them to fax them to my pedi. I knew she would take the time and not in 2 months to talk to me about what it said. Well I got the run around. ENT said they could not fax it because it was not records they "owned" since it was done at the hospital, call them and sign a release. I am willing to do anything to get the info at this point. So I called the hospital and they said they can't fax it to my pedi because it is the ENT that "owns" it as they are the ones that requested the study. To make a long story short after a day on the phone I got the hospital to talk to ENT and they then fax it to my pedi. But by then it was late in the day the weekend hit.

Monday I got a voice mail that the fax had been sent. But I did not have time to call the pedi. Yesterday I called to speak with her and they put me on hold for a nurse. After explaining my issue everyone agreed I needed a followup visit to talk about his results. I love, transfered this office back at the desk I told them why I needed to have the visit and her question "how soon can you come in?" Well unfortunately my days where packed yesterday and today but I am going at 10:40am tomorrow for a visit and it will be the best $30 co-pay I have ever spent. How did they expect me to go 2 months with no answers at the ENT I just don't understand. We are not talking a little test this is about his breathing, and me needed to know why now I was told to only use the o2 at 1/4!!!!!!!!

I have been doing 1/4 now when he naps (ENT nurse did say 1/4 was the noted on the new results but she would not tell me what that means) and I am awake but I just can't sleep like that at night before I get answers. So at night I put it back on 1/2 because I trust that amount since that is what we have been doing the last 5 months.

Wow this was longer then I meant it to be thanks for reading and I hope to have more news tomorrow or at least some answers before I go out of town for my peace of mind.