Pajama Day

Today is pajama day for Ben. Love this little robe that was handed down to us. Ben and I sat in front of our cozy wood pellet stove today - very relaxing!

Ben hanging out with his elephant.

Post Procedure

9 HOURS LATER...

HELLO BEAUTIFUL!

Baclofen Trial

Today was Ben's 2nd "Baclofen Trial". He was put under sedation while they injected baclofen into his spine. This was to see if the medication would help with his contractures. This picture below makes me laugh because this is how he has been all morning. He is ZONKED!

(I think he was in denial of this procedure today)

This is Ben's "wookie". He takes his elephant everywhere.:)
I moved Ben onto the procedure table.
This is Ben getting his sedation.
Here is Ben after he was moved to the PICU downstairs. He'll stay here overnight for observation.
Remember the saga with the dislocated elbow? Dr. Moen - his orthopedic doctor - came by today and looked at Ben's elbow. Because she has now seen it in person, she feels this is an acute dislocation. Because of that Ben will be splinted in the morning because right now his IV (see above) is in his left hand and would be in the way of the splint. They will wait until it can come out before splinting his elbow. I'll take a picture of it tomorrow.

*****

PS: The Baclofen trial failed. It did not loosen him up the way we were hoping. That means no pump for Ben.

...the rest of the story.

Okay...sorry for the delay and thanks for your patience. It was a LONG day at Dartmouth for more than a few reasons. I was sent from the ER with Ben up to see the derm people which resluted in a waste of time. The rash was not related to his arm situation - just as I had figured. The ER doc was ready to release us at that point. I told him not before we get a dopplar, an x-ray and some blood work. How's that for specifics? The dopplar shows whether or not he has a clot, thankfully that came back negative. His x-ray on the other hand showed a significant dislocation. Both with the ulna and radius, but significantly more with the radius. The problem? The ortho docs do not think this is an acute dislocation, but one that has slowly progressed due to the inactivity of his arms and the way they are growing. So...that means they do not think the swelling is related. We went home after they manually tried to manipulate his bones back into place - very, very painful. I finally told them to stop. We go in on Monday for a different procedure/overnight stay due to something totally unrelated, but his swelling will be addressed again. Monday or Tuesday I'll hopefully have an update. Thanks for your thoughts and prayers.
This is the x-ray of Ben's left arm. You can see the swollen tissue surrounding his bones. The two lower bones are the ulna (left) and radius (right). The round circle spot in the middle is his growth plate. Both the ulna and the radius should be sitting below the growth plate.

Emergency Room

Hello Ben...goodbye Ben.

(Steve just returned from Utah late last night and barely got to see Ben before we were off)

Here is the arm that is swollen. On the way here, Ben developed a blistery rash all over the trunk of his body and on the arm that is swollen. (see up by his armpit?)
The rash actually looks a lot redder in person than on camera. Here are some of the spots on his trunk.
An hour later he is still continuing to blister, this time where the diaper touches his legs. It's on both sides but I only took a picture of the one side.

At this point we have been here 90 minutes. We've seen the ER doc who is passing us off to a dermatologist for now. The rash is distracting them from figuring out what is going on with his arm. First they want to find out why he's reacting so suddenly to contact to his skin. I'll update as I find out things.

Decisions

I know this is blurry, but you can see the marks left by the foley cath on his belly. Those are old blisters.

With a child like Ben comes many decisions and challenges. The latest involves his bladder. Ben has what is called a "neurogenic bladder". His brain does not communicate properly with his bladder resulting in "urine retention" and other issues. Because of this his urologist started him on a medication called "ditropan". This helps relax the muscle allowing him to pee as needed. We also cath him at night. The "foley cathetars" that stay in all night are made of silicone. They used to be made of latex, but most kids that need to be cathed are "latex allergic" and so silicone seems to be one of the materials that are safe. My child happens to be the exception. For over a year now Ben has had a lot of issues regarding these caths. His skin blisters if the cath comes in contact with his belly, and he bleeds and has some discharge from having contact on the inside. The up side of all of this is that his bladder looks almost normal via scan after being on the meds and being cathed. His life seems more comfortable. (except for the allergic reaction to the caths) We visited an allergist the other day and his recommedation was to get "patch testing" although he feels like the blistering of the skin is evidence enough that he is allergic. He also feels like we should stop using the caths. The problem? We have not been able to find any company out there that make "latex free" or "silicone free" foley cathetars. He needs to be cathed in order to keep his kidneys safe and his life more comfortable. The urologist talked to me about a possible procedure that might do away with having to be cathed at all. He would go in and cut the muscle that holds the pee in your bladder. If he did this then Ben would just slowly leak urine into his diaper. Sounds great, right? Maybe. The down side to this is that he might have irritation from being exposed to urine 24/7. His skin is so sensitive that there is a chance his skin could break down causing major problems. The "non-permanent" solution would be to inject botox into that muscle which would paralyze it causing the same effect. (slowly leaking urine into his diaper) If we went with this (which we will probably atleast try) then we will know if his skin will have issues or not. The affect of the botox lasts anywhere from 6 weeks to 6 months. Depending on how his skin looks as a result of the botox will help us decide what we need to do.

"Make A Wish" Cruise

Our family had the privilege of spending an evening on the Mount Washington with other Make A Wish kids and their families. It was our chance to thank the donors who make it possible for special kids like me to experience once in a lifetime experiences. They do cool stuff, like invite Storm Troopers to sail along with us.
Mom and me checking out the water from down below. It was too cold for me up top.
My brother Kaleb and my mom.
My cute brother and lovely sister Kayla.

The afternoon was beautiful. We had such a great time. Thanks again Make A Wish!

You can read all about it from the local newspaper!

MAKE A WISH