MDA Clinic

Stressful morning today.  We had to get the boys up and out of here by 8:15.  We made it out more like 8:30 but that was okay because my ETD goal had wiggle room.  Nancy H was here for Collie and Julie for Casey so we all did our thing to make this happen.

Of course, we get to Fletcher Allen and up to the Children's Hospital and we wait.  Actually, Colin, Nancy and I didn't wait too long before we had to go in for the blood pressure check, med check, etc.  But the medical assistant was going to find someone to do Casey at the same time and apparently that didn't happen because when I went looking for them they were still in the waiting area, sigh.

Then, when we were all together again in our room (thankfully they give us the procedure room since it's bigger than an exam room).  we had to wait a bit before we had anyone come in.  We saw Paul (PT) and he's going to get on Jack about Casey's order for his chair which includes a new headrest, air cushion and elevating leg rests.  It's been weeks and Jack told me the other day he was still getting quotes for the head rest pieces, sigh again.

Dr. Benjamin (physiatrist-rehab doc) came in and was energetic like normal.  He's a funny, crazy guy and talks about drumming a lot and speaks quickly.  We like him, it's just kind of hard to keep up with him, ha ha.  Talked about Colin's hands and how they are turning a bit and how they are puffy.  Not much to do but massage hands and try to prop them up when we can.  Talked about stander, etc.  No changes for him.  He had us put Casey's foot plate out a bit and put a pillow behind his knees to do a little stretching, which is good.  It will also help prepare Casey for when he gets to use his leg rests (if we get insurance approval) independently through his chair electronics with his switch.  Will be trying to do more belly time with him to work on his legs and hips. 

Saw Dr. Bingham (neuro) and caught him up.  I gave him some info on the happenings in SMA research at Nationwide Children's hospital.  Pretty exciting stuff which will require a separate blog entry one of these days.

At this point Casey was being totally loud and vocalizing and would not stop.  It was awful.  He wouldn't use his DynaVox to tell us what was up, he wouldn't blink yes or no.  He could not be distracted.  NOTHING would stop him.  I was pretty much losing my mind.  I couldn't think and couldn't speak with the doctors effectively.  It was so frustrating.  Julie didn't want to bring him out because that's what she thought he wanted and just wouldn't tell us.  Another sigh.

Dr. Cowan (pulmonologist) came in.  We tried to ignore Casey's yelling but it was hard.  We spoke of Colin's respiratory status (as we have done for a couple of years now--well, Dr. Cowan hasn't been here very long but we've discussed it with Dr. Lahiri as well), and how a trach is probably a good idea for Colin in the near future.  He's doing well, but he does do oxygen "dips" when he's off bipap and hasn't spent more than a couple minutes off of bipap for a long time.  We always talk about how if he does need to be intubated it would be next to impossible to do this without trauma to him.  If he needs intubating it should be in a controlled situation using fibre optics and not the emergency way which COULD happen.  Colin hasn't had a crash in a long time but who is to say that he won't in the future.  And, so far, he responds to coughs well, and Gene has blown in his mouth a couple of times in the past (nothing recent) and that has cleared him out.  Anyway, he's also going to need spinal fusion in the near future (before his curve gets bigger and compromises his lungs).  The docs aren't too optimistic about him going back to bipap successfully after a big surgery.  I'm on the fence about that but again, that's another blog. 

Dr. Cowan and I talked about me noticing that towards morning Casey's heartrate has been going up although he's still sound asleep.  I'm going to have the nurse monitor and log his heartrate and time and see if we see a pattern.  We also talked about having both boys go to the newly formed Trach/Vent clinic.  It would be with the pulmonary doc and Janet Deslaurier who is the head Respiratory Therapist at Fletcher Allen.  She will go over settings and equipment and that kind of stuff so we'll probably do that in the next month or so. 

Dr. Cowan is going to submit to Apria for the items we didn't get with the T-70 cough assist when we got Casey's recently.  Long story.  But we only got it with the bag and machine.  No battery, no accessory cord to use in a vehicle and no rolling stand.  We'll see.  We got those things (minus the rolling stand--but we hadn't asked for one--)when we got the machine a while ago for Colin.

She'll also take on trying to get NanoVM vitamins/minerals covered by insurance for us.  Some families pay out of pocket and some get it covered so we'll see about that, too.  She said she'd have GI write a strong letter if it doesn't get pre-authorized at the first shot. 

Dr. Cowan is great.  She trained with Dr. Schroth in Madison, Wisconsin.  Dr. Schroth is an SMA guru doc that many, many families go to and will travel many miles to have appointments with.  So, Dr. Cowan knows the SMA protocols and will help us with our nutrition and pulmonary concerns if we do go ahead with surgery for Colin.  And, of course, she would be there if we have ANY admission for either boy, so that gives us some relief from some worries, anyway.  

Casey was still vocalizing, "yelling", whatever you want to call it.  What the heck?  If you've never met Casey, you probably have no idea of how loud he can actually be.  Many kids with SMA and trachs are not able to be this loud (or maybe they are just more polite than my kid, ha ha). 

Casey really had me over the edge and I didn't ask some of my questions so I was quite pleased when Dr. Cowan called me at home later on to follow up.  Yay!

We went straight home because Nancy H was only scheduled for noon.  I think she made it out of here a little before 1 PM.  Again, we are very lucky we live so close to our hospital.

We got the boys settled into the living room.  It started to rain just as we were going inside. 

Julie ended up playing some wii with the boys.  I took a little snooze after I spoke with Dr. Cowan and after I chatted with Casey's school case manager.  Still trying to find transportation for Casey's summer school if things don't work out with SSTA. 

Aunt Chris was here for a while.  Gene didn't go anywhere today.  Very unusual for him.  I did some stuff in the wish room and watched Orange is the New Black on Netflix.  It's odd for me to get addicted to a show like that.  Especially with the theme of the show and how graphic it is (mature audiences, for sure!)--not like me, but I had read the book so I wanted to check it out.  I've just started season 2. 

Got the boys into bed a little earlier tonight but they were still up when Deb came at 10:00.  We had thought that Casey would drop off to sleep early after expending so much energy, but no go.