Hospital Stay

Ok, let me start by saying this isn't an emergency trip.  Caleb is about the same as he has been.  Which is not great, but not bad.  In my last post I talked about us trying to keep him off of a G-tube (or feeding tube). About 2 weeks ago I really came to the place where I felt like I was fighting the inevitable.  We had an appointment at Scottish Rite with our neurologist on the 5th of June and we discussed having him seen by their Developmental Pediatrician.  (I had asked about seeing a GI and they said we could do that or be seen by their DP)  They have a whole feeding team at Scottish Rite. (did not know that!) So the dietitian was going to refer us.  She said it may be a few months before we can get in.  At this appointment Jason was still very uneasy about the idea of the G-tube. (if you want to know a little more about a G-tube you can visit THIS blog from another special needs mom explaining it.  From my understanding most surgeons now go straight to the "button" instead of the starter tube she explains)
        (Side note: I went back and read my last post, it was pretty optimistic! Caleb is still doing pretty well in the energy department.  But his mouth and tongue muscles have gotten significantly weaker over the last few months.  This last week he ate a lot of yogurt, applesauce, and PB&J.  He can't chew a lot and he has been choking on almost everything.  That coupled with the fact that it takes 30min to an hour to feed him about 10 bites makes for a very long feeding experience.  Then put on the pressure that we feel to get food into him and we sometimes have to be "mean" and try to force him to eat, which we can't really do, so pretty much eating is not a very enjoyable experience for any of us)

The Doctors said a few really good things at the appointment.  They said that Caleb is probably not physically able to consume the amount of calories his body needs to grow.  Seeing that he has a neuro-muscular disease he needs even more calories than the average kid his age. Then because of the energy and time it takes to feed him he is probably burning up the food before he is done eating.  It was all becoming very apparent that we were fighting an uphill battle. (apparent to me anyway)

But I knew Jason wasn't there yet.  He was still fighting and wanted to keep this from happening.  So I prayed. I've done the nagging thing before, or the "undermine your husband" thing, and neither of those approaches work.  So I prayed and let it go.  Then last weekend I approached the subject very cautiously.  I asked how I could help him become more okay with the idea.  (I have done a bit of reading and researching and that helped me to be more comfortable so maybe it would help him?) He said very simply, "I think he is ready."  UM WHAT?! (God is so good) So we talked about it for about 30 minutes and he just said that he came to the place where he saw that Caleb really needs this.  But I understand what a hard decision this is.  See, this means that there is something really wrong with our precious Caleb.  There will be this little button attached to his sweet tummy that reminds us of that every day.  Every time I have to flush out the line and hook him up to food it will be a reminder that our little boy is sick.  And he really does have special needs.  It makes us look at reality in a way we haven't had to before.  (ugh what a hard thing to do!)

So I began looking for the dietitians card from our appointment. I couldn't find it anywhere! And the days got away from me so I didn't call to try and talk to her and tell her that we wanted to move in that direction.  Well lo and behold today (Thursday) I got a phone call. (I really don't like that I am starting to recognize different hospitals numbers when they call!) It was her! And she wanted to know if we could come in TOMORROW morning!! Our Neurologist talked with the DP and they just so happen to have an opening.  She told us that we would probably be admitted for the weekend (Friday and Saturday) and if not then for sure on Monday. They want to run a bunch of tests.  X-rays, blood work, OT eating evaluations, swallow testing, all sorts of things.  We actually had a few things scheduled this weekend (not our norm) but I got all of them taken care of and my mom just so happen to by flying back home tonight so she can stay home with the girls.  Talk about providence.  Oh and a HUGE thing, it's at Scottish Rite, and they aren't charging for their services yet!! (they will be very shortly)  EEEEEEEEEKKKKKK!!! I seriously can't hardly believe how well God is taking care of us!!! This is so much better than I could have tried to work out on my own. And to top it off we just received a check from a family member this week that will help us pay for food for us while we are at the hospital. (we were going to save it to help pay for Caleb's other chair, but this is a little more pressing, although we will have some left to save) God is so cool.

Honestly we don't know much right now.  (tests they are going to run, how long we will be there) We meet with the Dr. at 8:30 in the morning to map out a plan.  He might send us home and tell us to come back on Monday, he might keep us until Sunday, let us go home for the day and then come back Monday, we don't know yet.  I'll keep you all posted, periodically on Facebook and then some here too.  Caleb has never slept in a hospital before so I don't really know what to expect.  Could be interesting.

One other quick thing, we have been trying to get Caleb in to see the Muscular Dystrophy Doctor at Children's.  His particular condition falls under the MDA umbrella and we want to see if they can help us get a motorized chair for him.  It took about 3 weeks for the nurse to get the referral in, but she finally called and said I would be getting a call from them and might be able to get in to see them in 3-4 months.  Later that after noon I did get a call from the MDA office to schedule an appointment.  They had an opening for June 26. UM WHAT?! Seriously?  How amazing! AND the Dr. is a neuromuscular specialist. (Which is someone we were wanted to try and see anyway) ::Godwink::

Ok one more other thing.  This week I took Caleb in to see a Chiropractic Neurologist.  We talked about what's going on and what he can do.  He adjusted Caleb, used the cold laser on him, and massaged his muscles a bit.  He said we will probably start to notice some things and the more we bring him in the more it will effect.  We did notice a few things later that night.  He was standing more in the jumper, like crazy standing that he never does, and he wanted to get in Henry and he walked some in that.  (this was after PT earlier that day) His words seemed to be a little clearer than they have been before also.  So we are going to keep doing that weekly for now and see if we keep noticing things.

So it is 2am and I have to be up in about 4 hours to finish getting things ready for our possible hospital stay.  Pray for us!!

Love,
Jessica