Wednesday, July 8, 2009

sorry for the wait

sorry, everyone.... it's been rather crazy around here lately. Since I last posted, Aidan has had several doctor's visits and we've had some other things going on. Aidan is doing really well right now. A few weeks ago, he was having episodes of crying that would last hours at a time for what seemed like all day. If he wasn't asleep, he was crying. It was hard to tell if he was in pain or upset.

I ended up taking him to his primary doctor, Dr. P. She did an abdominal x-ray, and found a lot of bowel gas. Aidan has always been gassy, and tube feedings don't help much. Normally the only time Aidan cries is if he is uncomfortable either position-wise or from his AFOS and splints or he has gas. He's now on a medication to help with the cramping and he's doing much better. We haven't had any all-day crying fits in a while. Dr. P did refer us to a pediatric gastro-interologist though.

The GI really didn't tell me anything that I didn't already know. There isn't much we can do about the gas except getting Aidan to go to the bathroom more regularly which will help get rid of the bad bacteria that cause the gas. We're trying a new medicine for reflux, in case he's having some issues with that as well, and everything seems to be going well.

Last week, we were at the hospital for doctor's appointments 3 days. The first one was the GI, then came pulmonology. The pulmonologist said everything is looking good. We go back to see him in 2 or 3 months (just in time to get ready for the next allergy season). He wanted us to get the allergy test that the lab FUBARed done again, so I took Aidan down after his appointment. What should have been a relatively quick and painless procedure ended up taking us 2 hours and resulted in making Aidan very upset for the rest of the day, and left him with 2 large bruises on his arms. All in all, he was stuck about 5 times trying to get blood. His veins are so tiny and they are deep. Sometimes they can get him on the first stick, not so last week. They weren't able to get anything.

The next day we had to come back for our 3rd and final visit of the week to see Dr. C, the neurologist. We tried the blood thing again after the appointment. That resulted in another 2 hours and produced no blood for the allergy test. They had us go straight to the Peds unit this time, and one of the respiratory therapists tried an arterial stick (OUCH!). We only tried it once.
Aidan cried and I fought back tears myself. So for now, we have no allergy test results because we can't seem to get blood from Aidan the turnip. :)

Anyway, so Dr. C thinks Aidan is doing well. We're going to try to start cutting back on some of his medicine (very slowly) to see how he does with it. I seriously need to start recording all of the doctors instructions when I go by myself because I can't remember everything. I'm supposed to follow up with him this week about how Aidan is doing I'm guessing with the crying episodes and then we'll start decreasing his clonidine dose. We go back to see him in September.

So that's it for the medical updates. The other thing that has been going on is that Aidan is no longer going to hyperbaric treatments. He and Russell had started going back and had only done 5 or 6 dives. Russell got an email one day from the center saying that Aidan could no longer recieve treatments if we did not remove his medication patches for the dives. They said that they didn't know about the patches, when in fact they did. When we first started going to the center we had their resident doctor look at them and she approved them and said that they were okay for him to wear during the dives. We've never "hidden" them on Aidan. We have to move the patches around to give his skin a break, but we've never "hidden" them from anyone.

The center was very insistent and very unconcerned with the possible effects of removing the patches. Russell got pretty upset with them (as did I, just not on the phone with them). We called the pharmacy, the manufacturer and our doctor to get a clarification about the patches and to find out if they could be removed and re-applied multiple times as we only get 1 patch per week to use. Had the center presented their concerns to us in a different manner, the matter could have been dealt with civily, instead, Russ said some things in anger that he shouldn't have said. The center decided that they would no longer treat Aidan. I personally tried to offer a solution by going to the dives with Aidan instead of Russell and they have ignored my email and they have not answered the phone when either of us have tried calling.

Considering that these treatments are about Aidan, that is all I'm concerned with. I had no issues with any particular person there and I am an adult and will behave like one. I don't have to like your "policies" or the fact that you change them on a whim and lie to save face, but DON'T MESS WITH MY CHILD! The fact that the owners of the center have a child who has special needs should make them a little understanding that when it comes to their child, if someone tells you you HAVE to do something, no negotiating, that could possibly cause a negative side effect in your child, you as a parent should question it! We are well aware of the risks involved in doing hyperbaric oxygen treatments.

So now, we have to find a new center to go to. I hope that the other center sent the unused portion of funds that were paid to them back to HUGS so that we can use the balance to pay for new treatments, but who knows since they don't feel it necessary to respond to either myself or Russell. I'm a bit bitter, can you tell? I'm upset because in the handful of treatments that Aidan had, I was seeing him smile and laugh more. He was more alert and he had started moving his feet away in response to being tickled. How is it that a place that is supposed to help kids like Aidan can be so uncaring and turn him away? Russell rarely loses his temper, and he apologized for his outburst and we tried to come up with an alternative if they were uncomfortable having him there. Oh, well... maybe it isn't a great loss. Maybe we'll find a better place to go. I don't know. I just want to do what is best for Aidan, that's obviously NOT what the center wants for my child.

Okay, so that's it for now. If you want to see what I've been doing you can check out my other blog ( Evan is doing well... he's a typical two year old. I'm still dealing with the fact that he is doing things that we have missed out on with Aidan since he turned two. Aidan's 2nd birthday was spent in the hospital when we should have been celebrating, and our lives shouldn't be like this. There are days that I absolutely HATE my life. I love the people in it, but I hate the situation. I want to turn back the clock and run like hell to save my baby from ever going near the water. I'll always want that. God had other plans and while I don't like God's plans, I have to deal with it. Not much else I can do. Running away, though it has it's allure some days, is not an option.

Please continue to pray for Aidan. Please pray that we find a way (and funds) to get him the treatments that he needs. Please pray that he continues to improve and that one day he'll resemble the little boy he would have been if this nightmare hadn't happened.

I thank you all for your thoughts, concerns, prayers and donations to help Aidan and our family. They don't go unnoticed, nor are they unappreciated or taken for granted.

Thank you!


Leslie said...

We will pray that the Lord removed that treatment center for something much, MUCH better. I'm so sorry they've done this. We're praying nightly for God to move in huge ways in Aidan and for improvements to come faster and faster until his complete recovery. And praying for your exhaustion...

Unknown said...

I'm shocked that the hyperbaric people are treating you like this. It's not like they don't know the stress that you guys are under. Their priority should be Aidan. Stay strong & I will continue my prayers for you. (((((hugs))))

Unknown said...

Praying for God's mercy over you, Erin, and that he would make a way for Aidan to continue his treatments. Thank you for continuing to share your ups and downs with us; it helps me to understand more of what it's like to have a special needs child and how best to help.