Friday, July 8, 2011

Surgery and AFOs (adaptive foot orthodics)

Today has been a very very very long day. First off, Jacob decided he was not sleeping last night. I have no clue what was wrong with him. We all finally fell asleep around 11:30 last night and he was awake at 2:45 this morning. Valium on board and all! No matter how I repositioned him he cried. I tried changing diapers, putting him in be with me etc. and nothing. Cry! Cry! Cry! Then Ava decided she was going to join the party about about 4am. So, Ava and Jacob watched tv. Ava made a bed on the floor at the foot of my bed and I sat Jacob in his feeder seat as a last ditch effort to get him to shut up so I could sleep. Well, I think this lasted about an hour. by 5am he was crying again. I laid him back in bed and with very loud music playing on my cell phone and his IPOD I finally went to sleep and I think he finally went to sleep around 6:30. We had to be up by 7:30 this morning. He was pretty pissed when I woke him up. Then he decided he would just laugh and laugh after a few minutes. I don't know what kinda crack he had before bed, but I hope he sleeps tonight. It has been a long time since I have had to wake up every hour with a baby.

Jack and I had everyone ready and fed by 8:15 and at the speech therapy office ON TIME by 8:30. Go us! We had an appointment with the ENT doctor in the same building at 9am. We ended up having to wait in the lobby for almost 45 minutes with 3 very cranky kids until they called us back. By then Jacob had fallen asleep. This was good because I wanted him to hear how bad Jacob sounded even when he was asleep. I pointed out he has not been sick in a while. The vomiting has been significantly less and he was still very congested and his tonsils are always huge. He agreed that it was time for them to come out. We made an appointment for him to have them removed July 27th. He will more than likely spend the night in the hospital. I'm very nervous about this surgery. I worry for complications and I worry that he will get sick before it is time for him to go. Oh, they are also taking the big skin tag off his right ear.

This brings me back to the whole insurance thing! Ugh! I don't understand this medicaid stuff. One minute it works and the next time it doesn't. Apparently when it was rant before the 5th it was expired then suddenly on the 5th it was good again. I called the home health people back and they tried to run it again. They said in the medicaid system that is shows that it is good for only today. She gave me the number to call to our local medicaid office. I finally got a hold of someone after about 20 attempts at calling and it saying their call volume was to high and to call back later. The lady I spoke to was absolutely no help! She looked him up in her computer and it showed that his benefit expire at the end of the month! WTH! I just don't get it. I asked the lady why? and I was told I had to call DCF. So, I call that number and once again go the message saying call volume was to high. At this point we had arrived at our next appointment so I gave up. I will have to call again on Monday. I also have spoke with several people who work in health care that have told me about different medicaid programs special needs kids are in. I was told by an old co-worker that there is 1 that I pay $20 a month and medicaid covers everything. HECK I would pay $50 if I did not have to deal with the uncertainty if it is there or not!

The up side to all of this is at least his insurance is GOOD until the end of the month. That will cover the $175 in co-pay for the week of their birthday and it will cover his tonsil and adenoid surgery. Praise God for him providing for us this month. We will see what next month will bring.

Our last appointment of the day was at Shriner's Hospital in Tampa. Jacob had his AFOs finished and got and abduction pillow for his hips for when he sleeps at night. It took up about 2 hours there. I had no idea there would be so much waiting to pick up AFOs. They put them on him, drew on them, and took them back off. They left the room for 30 minutes or so to cut them down to size. Then he had to wear them for 20 minutes to see if their were any pressure spots. Of course their was and then the guy was gone for another 20 minutes to fix it. Then the guy came in to fit him with the abduction pillow. It also had to be cut to size.

Between the ENT and Shriner's appointment we went to Target. We picked up one of Jacob's prescriptions and I let Jack pick out some toys for the boys for their birthday. We finished off the gift card that was given to us by another blogger. Thank You again! I can't want for the boys party!

After we came back from Tampa Jacob and Jack got hair cuts and we got dinner. Now we are home. I am hiding in my room with my kids. I am so very tired and just can't handle much more anxiety. 830 needs to come quick so I can put the kids to bed and hopefully get some sleep myself. I work for the next 2 days.

The new hip abduction pillow

Jacob's hair cut

Jacob's AFOs they have trucks on them :-)

Jacob playing with his switch toy. I love it!

1 comment:

  1. Such a long day.
    Victor had his tonsils out when he was 2. He snored like all get out and vomited all the time from his reflux. I think that made his adenoids and tonsils pretty swollen.
    They are pretty sore for a few days and then at 7 days have more pain as the scab comes off. It was so hard for Victor to drink because he had such a bad oral aversion, however, you have the G tube so at least you don't have to worry about dehydration. Best of luck.