Well, as I have always said....when things start looking up something else happens. =) Noah started bouncing up and down with his sats about 48 hours ago. We've been so excited as we have weaned him down to 3/4 liter during the day on his oxygen. Sunday night I bumped him back up to 1 liter and left him there all day yesterday. Last night and this morning he was still hanging out in the low 90's/occasionally hitting 89 and I knew something was up. He has been at 1.5 liter today and we've started the circus of Albuterol treatments.
I called the pediatrician to try and speak with his nursing assistant. This has kind of been Noah's cycle for the past several months, he makes progress and then starts getting sick. Oio! At first she and I had decided to wait out the day and see what happens. He was running a slight fever (99.2) and that upset me but I guess this nurse said anything under 100 is very mild and to not worry unless it reached above 100.
I still placed a call to his Pulmonologist Clinic in Fresno and spoke with a very unhelpful nurse. I talked to her about what was going on as well as the fact that we were never able to wean him off one of his diuretics several weeks ago like the doctor had wanted. Noah's diuretics haven't been adjusted to his weight/age since he came home back in April so my question to her was, he obviously still needs them so why hasn't anyone reviewed to see if the dosages need to be upped? She wouldn't offer any advice and insisted I first go to our doctor and he would have to call them. Oio!!!! I was so frustrated as I have called them before and in the past I felt they have been more helpful and at least have consulted with the doctors in the clinic but this nurse was just plain rude.
It didn't help that I was already walking on a thin thread due to the fact that I cancelled Jonah's extra GI appointment Thursday (as his new laxative appears to be working) and when I went to confirm the appointments for both boys on the 28th I was told they had inadvertently taken them off the schedule. WHAT! I was so upset. My sons have to be seen and we live two hours away not to mention how long it takes to get in to this ridiculous clinic! So after much fussing they put the boys back on the schedule on the 28th. I called back later to complain to the supervisor and she was very understanding and promised it would not happen again.
So between that and the rather rude nurse at the Pulmonology Clinic I was ready to pull my hair out. I was so glad when Shane agreed to come home and take Noah to the clinic so Dr. Nguyen could assess him and order a chest x-ray.
It is so hard to not get upset with the collective group of medical professionals in this area, that includes our therapists. Just this past Friday I showed up at 7:30 AM, just to accommodate the therapist, so she could squeeze both Jonah and Noah in only to find out she had not turned in her progress report on time to our insurance so they had not issued a renewal for Jonah. So guess who did not get his second therapy appointment last week? I was boiling mad. I was very nice to her but later I talked to those that process the paperwork and asked that they please try and assist Karen with getting her paperwork in on time so our insurance can do their job. I can't be showing up to appointments that aren't going to happen!
OIO! So, I am sorry to rant and rave but I feel I've had one too many incidents to not feel that a bunch of ingnoramuses are working as a collective whole for the medical profession in Central California. I hope to be fortunate enough to be proven wrong by the time our lives move on from this area. Oh, and there is more news coming on that front which I am not yet at liberty to discuss although I can say it looks to be that we will be staying in Bakersfield for a couple more years.
I hope and pray that at the end of this experience I will have a greater vision of why we stayed so long when some days I just don't understand how we ended up here in the first place. I am trying to be positive and Shane does a good job at going through the list of services and other items that we have and would only have by being in California. It is true, we live between Los Angeles and Madera and both places are nationally recognized for their children's health care. We also have the wonderful regional center who has assisted us with countless things. So I am trying to remember these blessings but when I have several specialty appointments out of town during the month and I make the day long commute with two cranky, screaming boys I wonder why we couldn't be just a few miles closer?
God knows all, this much I cannot deny and I don't always understand his plans. In the end I can hope to understand and will look forward to the day when I can look back and say, "So that is why!"
Shane is still at the pediatrician's office (hopefully receiving good news, I don't want a call saying they are taking Noah up to the hospital for monitoring) and I am here with sleeping Jonah.
We'll keep you posted as to any changes.
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