Sunday, July 17, 2011

Short version of a long story & our lives changing directions--yet again!

I have soooo very much information to share after our recent trip and going to the ULF conference. I will have to wait until we are home and I have more time to give the whole story. But for now...a few quick updates--We've met new amazing friends and supporters, lots of doctors and have a whole lot more information and opportunities for Ryder!!!!!

Some very recent discoveries and changes in short version---
1. I am concerned about Noah being affected as well. It may not be the case--but learned that his skin coloring may be a sign. We've always called him our beach baby and he gets so many compliments on his skin tone---well of course---he is so gorgeous!!!!! It may be a sign of Addison's disease. The whole family needs to be tested.

2. I have a lot of symptoms as a possible carrier.....fatigue, bladder issues, migraines, okay--I'm always tripping and stubbing my toes--so a little clumsy!!I get dizzy and have blurred vision and lower back pain often. It could be the many other diagnoses I have--or from stress--but further evaluation will be done. Symptoms often appear in a woman's 30's....hmmm

3. Ryder has pulled out his NG tube and it is really irritating his skin and obviously uncomfortable for him. We will be getting a G-tube or Mic-key tube (don't know the difference yet?) when we get home...which means back to the hospital for us---uugh. NG tubes are meant for short term. In reality, Ry will not regain swallowing skills and will always need asistance.

4. I will not be attending nursing school as planned. My kids need me now and that's more important. I will go back to school---even if I'm 80--to be a nurse:) I guess sometimes you have to put your own dreams on the back burner when you are a mama! This choice is partly for Ry and his medical needs and because I just learned both boys got excepted into Eduprize (charter school w/very long waiting list---w/focus on science/hands on curriculum---just awesome all around!!!!) They start this Thursday--if we get home in time from our trip!!! We are supposed to get home on Wednesday, but flying stand-by. Hail damaged some Frontier plans (which we are flying) and they canceled many flights. The school will accommodate us since we had a 4 day notice of acceptance!

5. I'd like to speak with my side of the family more about medical history (so expect a call or visit;) Al ports syndrome sounds a lot like advancement of a leukodystrophy--without cerebral disease (which happens) Kidney issues (overall organ functioning is affected in leuko) hearing, vision, walking and so on. It might not be anything--but interesting to learn more about.

6. I need help finding a pro bono lawyer, starting fundraisers (will be going to Kennedy Krieger or Mayo Clinic often) and referrals for endocrinologist (understanding leukodystrophy) and physiologist.

I think those are the top updates for now---if this is the short version-- the whole story may be a novel (haha)

****ironic observation--when I run spell check leukodystrophy comes up as catastrophy (that it sure is!!!!)

Thursday, July 7, 2011

home now

We're home!!! Aaahhh...after 6 days in the hospital we were all going stir crazy! Of course all the staff fell in love with Ryder...who wouldn't:) We were trained on his home care and I was confident going home. I wasn't expecting the new emotions after we got home. It was so surreal having to worry about his pump and pulling out his NG tube. I keep reminding myself its a new phase in our daily reality. We are excited to meet families in our situation and speak with doctors who may have more insight for us at the conference:)

Friday, July 1, 2011

conti. is in

continued update.....
sorry..couldn't turn pic!
Well "training" meant I just jumped right in and put the tube in myself with supervision. As of now Ryder has a NG tube through his nose down into his stomach. I put the tube 34 cm down through his nose. I started crying after the 1st 10 cm with him screaming:( I was definitely traumatized doing that more than Ryder was! It was scary, but I needed to be able to do it so I can care for him at home. It was better that way so I don't stay up dreading the task all night! He will have a pump at night for fluids and I was given a stethoscope. I am getting a quick crash course before starting my nursing classes at least!  Anyways, Ryder seems to be adjusting to it so far. We will be in the hospital until Monday night. We are hoping he doesn't try pulling it out of his nose. If he does, we will need to get a GI tube through his stomach. I sent Les home to grab some pillows and stuff so at least we can be a little more comfortable! My cell phone is out of battery...Les will grab my charger too (if he remembers). I forgot to mention in the 1st update that Ryder has another ear infection also. His right ear is draining tons of puss..yucky. The doctor said that means the tubes are working at least.

In the hospital--but doing ok

I don't have much time...but have a lot of info to update so I'll just get right to it. Ryder has been having trouble w/constipation & difficulty swallowing. I thought his constipation had cleared up 2 weeks ago after a 3 day clean out w/miralax & sentrox...then miralax daily. I was wrong. He is still having daily, soft bm's, but he is very, very blocked up still and in pain having bm's. He went to have a swallow study done about 2 weeks ago as well. We had to thicken his liquids and give him even smaller bites of solid foods as a result of that visit. He hates the thickened liquids. He has barely gotten down 10 oz (if even) of fluid a day for several weeks now. I called the GI yesterday and also also talked to a nutritionist. They were very concerned about him and held a meeting to discuss a plan of action. In a few hours I was called back and told to pack our bags for at least 1-3 days and bring him to the hospital as soon as we could. Since no beds were available, we waited in triage last night until about 2am. Blood work & x-rays were done. We discovered he is still very constipated/blocked up. He has been getting rehydrate through IV.....luckily he wasn't to dehydrated and we caught this in time:) His blood work came back normal, so he is still getting adequate nutrition--as of now, but since he is such a picky eater, having trouble swallowing and hardly drinking anything, a feeding tube will be placed today. We are being trained how to insert it and manage that today. He is also getting flushed out...thank goodness! Les and I wish we where still in triage!! The budget cuts are sooo apparent in the hospital--very sad! We've had no pillows, a roach crawled across the floor and into/under my bag (uugh--made Les hunt it down), there isn't enough staff and just all around uncomfortable. Ryder refused to sleep in the crib so Les, Ryder and I all spent the night on a 3 seated couch. I had a migraine, but they couldn't give me Tylenol and the gift shop was closed!!!! Today is my birthday----I think I'm going to have a redo birthday next week;)
We are being called into training so wish us luck!