Tuesday, May 29, 2012

Quick Update

Quick update: I just got home from the hospital--Ryder will be there at least a few more days I'm guessing. He was able to hold down a few teddy grahams today-- he hasn't been tube feed or eaten anything since Sat. so he's been miserable. They started his bowel clean out when I was there & it will run through the night. EEG tomorrow & I hope he'll be able to eat. He was able to sit up on his own today at least & had some energy. It will be a long night for Les & Ry though. The bowel clean out gives him bad cramps & he's just uncomfortable.

Hospitalized once again

Ryder is back in the hospital. I'm at a loss and very sad tonight. I start block 3 nursing classes tomorrow so I had to leave Les with Ry. I know he's in great hands, but I want to be with my baby:( I'm going to be crazy w/school but you can text me at 480-600-5461 if you'd like short updates.

Sunday, May 20, 2012

Results are back

Ryder's Lumbar Puncture results are back and all negative. The bad news is that some of these tests could have been caused by an issue that could have been treatable. So really we are still no closer to knowing an exact diagnosis. The next step is a muscle biopsy in Atlanta, Georgia. As of now, Les and I both agree to hold off on doing this. I feel it is to invasive and we may not get any answers from that either. If I remember correctly, the muscle biopsy is to rule out more forms of Leukodystrophy like MLD, which is the direction his neurologist is going now. However, over a year ago the doctors believed it was PMD or PMD-like disease. There are over 45 forms of Leukodystrophy and testing is very expensive. About 50% of individuals with Leukodystrophy never find their exact form of the disease. Over a year ago Ryder, Les and I had blood test to have a full genome sequencing test done. It was finally funded a few months ago. Now, instead of the muscle biopsy, we have decided to wait for the results of the sequencing. It could be awhile since it is very complicated and ours aren’t the only ones the doctors are working on. I wouldn’t be so persistent about getting an exact diagnosis if it weren’t for our other two sons. Leukodystrophy is genetic (in most cases) and it has a variety of onset ages from birth to adult. Our older sons may possibly be carriers and their future children could be affected. There is also the possibility that they may also have the disease without any symptoms yet. I worry sometimes about Noah having Addison’s just because he is so much darker skinned then the rest of our family. I think and hope it is just my mind wandering to the what- if’s though. Ryder’s GI appointment was last week. Build-a-Bear donated bears with GI tubes and one was given to Ryder, how sweet is that?! Ryder loves it!! GI issues seem to be the most trouble for Ryder. He still has an upper BM blockage that hasn’t been relieved by miralax, little tummy stimulants or enemas. The doctor is talking about an inpatient clean out now. It may help him feel better. His intestines are very weak (which is common in a lot of kid’s w/Leukodystrophy). Because his intestines aren’t able to squeeze out bowels, it just keeps backing up and when he does have a bm with help of all his medicine, it just pushes around the blockage instead of softening it and allowing him to pass it. (not sure if that makes sense?!) Anyways, we will keep bringing Ryder to his appointments and working with the doctors and therapist, but as of now, we will live every day to the fullest and hope to have answers one day…

Wednesday, May 16, 2012

Ryder's update

I took Ryder to the Ped. Specialist today & felt like we got a lot accomplished:) Ryder will be getting a specialized carseat, wheelchair & Walker. He hasn't been able to walk w/out holding my hand or being very unbalanced since the hospital stay--but still hoping it will come back to him. They offered a special seat for the tub, but don't feel he needs that quite yet. He continues to gain weight--yay--26.7 lbs:) Not so good news-- he is becoming hypertonic (he used to be very floppy, but is getting stiff:( ) We've noticed several absent sezuires again so he will get another EEG. LP results haven't come back yet, but will keep everyone posted:) We are also getting both the other boys counseling because it has been hard on them as well:( I'm LOVING my time w/ my favorite boys before blk 3 of nursing school starts!!! Why can't I just be super rich, spend time with my favorite boys & peeps, and volunteer my time/talents??!! That would just be super;) I changed my clinicals to PCH instead of Cardons for Block 3. Our visit to Cardons was horrible. I really liked the rooms and 3/7 nurses, but didn't like any doctor there. They treated me (in my opinion) like I had no clue and after a few days was able to get ahold of Ryder's neurologist (who is an angel here on Earth!!!) He was able to talk to the Cardon's doctors and get Ry the help he needed.Some nurses acted like they never saw a GI Tube!!! I had to tell one nurse to give Ryder tylenol through his GI tube instead of rectully!!!! After Ryder's O2 SATS dropped to 87% I refused morphine for him. I know it suppresses respritory function--but that is extreme!! I'm also sad that the 1st time earlier that day when he got morphine, the nurse didn't watch his pulse ox!!! I felt uncomofortable with him having morphine at all, tylenol seemed to be okay. I need to learn to trust my gut more then I do when it comes to Ryder! Lesson learned though;)

Friday, May 4, 2012

Back in the Hospital

Ryder had a lumbar puncture on Wednesday. Yesterday he was so miserable and rolling around in pain. I though it may be a GI issue along with being sore and a possible headache. However, he started vomiting around 11pm last night and continued all morning. He has nothing in his tummy, so is just throwing up bile. He is now admitted in the hospital to get the vomiting under control and help keep him hydrated. The doctors are telling me it is unrelated to the lumbar puncture, it's just a really bad stomach flu. It is just so strange that he got it right after his LP?! He was just given some Morphine and more Zofran. He hasn't slept more than 15 minutes at a time for the last few days:( I'm hoping he'll fall asleep soon!

 The ER doctor gave me such a rough time this morning. They wanted to give him a tablet of Zofran that dissolved in his mouth. I told them he needed an IV started because he was throwing up bile and was dehydrated and zofran through IV would work better for him. But they tried the tablet anyway and he immediately threw it up. The nurse came back with ANOTHER tablet! I said it was ridiculous to give him another pill and I wanted an IV started. The nurse said the doctor wanted to try one more time by mouth (which still doesn't make since to me) and he gave him the pill. Again, he threw up right away. That ticked me off since I said I didn't want him to have another pill!!!!! Anyways, the nurse went back and told the doctor. When the nurse came back into the room he said "well I guess we get our way now and we can start an IV!" To say the least, I am not impressed with the ER doctor at all!!! It is really nice up on the floor though and the staff is wonderful. I’m hoping we will be home tomorrow, it Ryder can hold some food down by then.