SMA Syndrome??

So, I talked to Ben's GI doctor and he suggested to go even slower and continuous with Ben's feeds (same thing some of the CHARGE parent's suggested - thank you). We are now feeding him 50 mls (1 1/2 oz) an hour 24 hours a day.

Ben could have a very rare thing called SMA Syndrome. It is also referred to as "cast syndrome" and affects even typical people in a body cast. What happens, is a part of the digestive system gets pinched from being cast a certain way and from the lack of mobility. Laying on your back worsens the problem (Ben's only way to lay). People have to be admitted for this because of dehydration and eventually anorexia because they don't want to eat since it makes them so sick. They are then given a feeding tube with continuous feeds until the cast comes off. Because Ben already has a feeding tube, we have an advantage and can do this at home (finally, a perk to a feeding tube). There is no cure for SMA other than slow, continuous feeds and keeping the person hydrated. Once the cast comes off, the problem goes away. Let's hope we figured it out!

Hopefully this helps.

Vomiting AGAIN...

Ben is vomiting again. UGH! I just can't seem to figure out why. He was good for a day when we stopped his Tylenol with Codeine, but now he is back to it. He isn't as bad as he was last Wednesday, but still having trouble with every feed. We are giving him LOTS of little feeds throughout the day and night because Ben has trouble tolerating feeds when he isn't in a cast. The pump now takes 45 minutes to push 80 mls (2 1/2 oz) into his belly and we run his pump 15 times a day - but that still isn't working. Ben is fine when he isn't eating, only when he is and his feed gets towards the end does he start gagging and vomiting. If I sit by him and notice the look in his eyes right before he throws up, I'm able to keep him from vomiting by quickly suctioning his trach and then his mouth. I don't know if the one dose of Valium he is getting at night is causing him nausea or if the regular Tylenol every 4 hours is doing it.But, it seems to tie in with his trach secretions. As soon as he makes a little gurgle, he needs suctioned immediately or the vomiting cycle starts. Any ideas anyone? I'm grasping at straws right now. I will call his GI doc today when they open to see if they have any thoughts. I'm also going to see if I can do without the one dose of Valium tonight - I figure it is the best night to try and cut it out since we don't have a night nurse and either Mike, my mom or I will be the one with him and we know him the best. But any suggestions would be appreciated!!

Creative Playing

We have had to become very creative finding ways to keep Ben entertained. It has only been five days and he already seems bored (poor baby). This morning when he woke up, he seemed so sad. He wasn't in pain, just looked depressed and confused. It broke my heart! We are trying to prop him every way possible to allow him to play with his toys. He is already tired of TV.

While we were in the hospital, one of the wonderful inpatient surgery nurses told us about this new pillow that she learned about in a recent seminar. It feels like dough and we can use it to put under Ben's pressure points and to prop him. We borrowed one while we were in the hospital, but it was a loaner from the NICU so we had to give it back once we were discharged. We got a call from the nurse earlier this week and she said she called the rep who presented during this seminar. She told him about Ben and was able to get two of these pillows shipped to our house. Can you believe it! They are wonderful and help tremendously! She really went above and beyond the call of duty for us. We can't thank her enough. Also, a nurse from our home care agency recommended a bean bag chair. That too has been so helpful. Everyone has been so nice to us recently, it feels so good to know so many people care about Ben.

Below is a picture of our little guy playing with his toys the best he can. My mom likes to call this picture "The Prince and the Pea" for obvious reasons.

Feeling Better - FINALLY

Yes, you read that correctly! Ben is feeling better today. Hooray! No more vomitting and he is now playing with his toys (well, we hold them for him and he pushing the button to activate them). It was either the pain meds that were making him sick or a touch of the flu he possibly caught in the hospital. Regardless, it warms my heart to see him somewhat back to his old self now. It's amazing how much your mood and spirit is dictated by your child's health and happiness. Thank you to everyone for all of your support, words of encouragement and offers of help. We appreciate it!

Can't Keep Anything Down

Ben is having a rough day today. He woke up vomitting and hasn't been able to keep anything down all day - food or med's. We can't figure out why either. The doctor thinks he is getting sick from constipation, but I think it has more to do with the pain med's (they have him on Valium and Tylenol with codeine). We have tried EVERYTHING to get him to go the bathroom and so far nothing. In the meantime, we've switched to straight pedialyte and stopped all med's into his stomach. And to help with pain, I am just giving him a regular Children's Tylenol suppository - it isn't much, but I'm hoping it takes the edge off. My mom and I are keeping a close eye on him and suctioning his mouth and trach very frequently whenever he starts to look like he might vomit. So far, we've been able to keep it under control and he has only been gagging every 15 minutes. Ugh, I wish I knew what to do!

Sad News

On New Year's Day, we learned that Mike's dear grandfather had passed away unexpectedly. He was an amazing man, a wonderful grandfather/father/husband/great grandfather. We will miss him tremendously. Mike will be heading to Youngstown later today for the viewing and mass on Thursday and Friday. Please pray for him and his entire family during this difficult time.

Worst New Year's Eve Ever

Ben had a horrible, horrible day yesterday. A terrible accident happened at 9:30 a.m. while the physical therapist was working with Ben. Instantly, I knew something really serious was wrong, so we called his doctor and rushed him to Children's Hospital. Ben's right femur was completely fractured in half (his thigh bone). Because of the severity of the injury and his age, he was admitted to the orthopedic floor while we waited for an opening in the OR. I have never seen Ben in so much pain before. I can't even begin to describe how horrible it was as a parent not to be able to help your child feel better.

We are home from the hospital now and Ben is doing well considering (he is such a trooper). He is in a Spica cast, which is also referred to as a body cast. They were able to dip it down in the front to expose his g-tube, but the rest of his body is cast from his armpits down. There is also a metal rod cast between his legs separating them. He has to wear the cast for 6-weeks and I was told that kids with other issues tend to take longer to heal. He can't move and we need to reposition him every 2-4 hours to avoid sores - which is basically tilting him a little to the right, then to the left, etc. Diapering is a bit challenging. We have to tuck these pads into the cast opening they left between his legs, then tuck a diaper in, then wrap a diaper two sizes larger around the whole thing. Every 10 days Ben will need to get x-rays to make sure he doesn't have to be recast or manipulated again (which would have to occur in the OR so I'm praying that doesn't happen).

And as if our day wasn't bad enough, a deer ran into our car on the way home from the hospital with Ben. Luckily, it only left a small dent.

Hopefully we've already been through the worst of it and these next six weeks will go by quickly.