Where did Wednesday go?

Hmmm, so I guess I never posted about Wednesday.  It was busy! :) We got up and Caleb had his swallow study first thing in the morning.  (he couldn't eat before it, but it was scheduled for 8 so it was ok) They were running a bit late so it didn't start until almost 9.  They had taken his tube out of his nose the previous night because they wanted to get a true picture of how he chewed and swallowed.  He slept a lot better and I even had to wake him up a little before 8 to get ready.  (I was pretty glad it was my night to sleep with him since he did so well!) Anyway, they had him eat 7 different things that all had barium in them.  They needed him to take 2-3 bites of each thing.  As he was chewing and swallowing they took an x-ray video of his profile.  It was pretty cool to watch.  He ate better there than he has in weeks! I was so thrilled! He ate and drank everything they needed him to. It was over pretty quick and we were done with tests for the day.
Unfortunately they came to our room within a few hours to put his tube back in, they still didn't want him drinking anything by mouth.  He wasn't very happy when they put it back in (duh) but left it alone and didn't really gag on it this time.
We went up for the results later that afternoon.  We got to watch the video and the Speech therapist showed us what was happening and what they were looking for.  It was all VERY interesting.  I feel like I remember a lot about science from school, so most of what she was saying I knew parts of.  Anyway, it showed that Caleb has trouble swallowing.  He gets fatigued and has to really work at manipulating the food in his mouth and to get it down his throat.  It sometimes gets stuck right over the entrance to his airway before it goes down.  The end result is they want him to no drink liquids by mouth.  Besides his bottle he didn't drink a lot anyway, and since we have been here he has only asked for juice 1 time.  I was kinda surprised he didn't want his bottle since that is the first thing he does in the morning and the last thing before bed.  Although he hasn't been drinking very much anymore.  They say that kids can know it hurts or they have trouble with it so they don't want to drink.  Caleb has always been very in tune with his body and I have come to trust that.  I am so looking forward to the stress free eating for him.  He can eat as much or as little as he wants and it really doesn't matter.
We were supposed to see the Physical Therapist here and go by the Mobility clinic to get a device to help prop him up when he is sitting or sleeping but we ran out of time for both.
My parents brought us dinner and they brought the girls with them! I miss them so much! When I go home on my nights they are already in bed and I leave before they get up.  I am really looking forward to being home with all my babies.  It was my night to go home so I did, all the while thinking about what tomorrow was going to be like.

The surgery post should come after this, but like I said, I totally forgot about Wednesday so they are a little out of order :)

Surgery!!

(I wrote part of this late last night but got too tired to finish)
Today was the day! We got ready at Scottish Rite and headed over to Medical City. It was only about a 10 minute drive and we made it just fine. We got checked in and they told us to wait about an hour. So we played in the play room. When we checked back an hour later they said everything was running a bit behind. Like 2 hours behind! So Jason and I took turns eating in the cafeteria ( we didn't want to eat in front of Caleb since he wasn't allowed to eat) and Caleb took a nap during part of the wait. It was finally time to go get started! They gave him some "goofy juice" which always works so well. I even took a video of Him after it had kicked in! So funny!

In the play room waiting.  The Lion says, "RWAR!!!"

His last picture with just 1 button on his tummy

We signed some papers and they took him away.  It was a pretty quick procedure, took a little less than an hour.  The surgeon came out and said he did great and everything went according to plan.  They were able to use the mic-key button as hoped.  (sometimes things don't go how they want and they have to start with a little different tube and then change it out in a few months) He did say that Caleb was having a bit of a hard time waking up but that when he woke up some they would come and get us.

Sleeping during our 2 hour wait

It was about another 30 minutes before they came to take us back.  Apparently he is REALLY sensitive to narcotics (morphine) and they had to give him something to reverse it's effects.  The anesthesiologist said that was very rare but fine none the less.  He was pretty cranky when we got back there.  I held him some and that seemed to help. He was the most mad about his IV.  He hated all the tape! (I think the IV was the worst  because they gave him local anesthetic at the site of the button so he didn't know that hurt yet)  He was still pretty out of it and kept going in and out of sleep.  We were in the recovery room for about 2 hours and then they finally wheeled us up to our room.

About an hour after surgery in the recovery room

Alyssa and her mom came and brought us food (thank you!) and got to watch Caleb sleep. :) Overall the night went pretty well.  They started feeding him Pedialyte through his button at midnight and by the morning had worked him over to formula.  He did great, no gagging or trouble.  He kept wanting to be help on our shoulder but after trying once or twice he realized that didn't work very well.  Poor guy.  He did wake up saying, "Ow ow ow" one time but they got him some Tylenol with codeine and that took care of it.  He woke up a few times during the night but went back to sleep pretty quick.  Jason and I took turns sleeping with him and that was nice.  At Scottish Rite they only let 1 parent stay over night which is really hard.  It's nice for the one that gets to go home and sleep uninterrupted, but the driving back and forth is a pain.  (especially the traffic in the mornings) And the one that is left at the hospital has a rough time being alone with no support.  So it was a nice change for us both to be there.
The morning was spent watching some Barney and Curious George and then he fell back asleep around noon. (he was only up for about 3 hours.  But long enough to know his tummy hurt!) The surgeon came in a little after 10 and said he was going to get us out of there to come back to Scottish Rite.  3 hours later the paperwork was done :-/ We got loaded up and headed back to our "home base." We have been here for a few hours and Caleb has been sleeping the whole time.
Our dietitian came in and got him started on feeds again,she said no solid foods for 48 more hours.  Hopefully Caleb will be ok with that.  She is a big fan of feeding blenderized food through the tube so in a few weeks she will start to write us plans for that.  He will still be getting Pediasure through the button, but I am thrilled about getting him some good fruits and veggies since he won't eat many by mouth. Our wonderful organic garden will benefit him too!! YEA!! She also gave us a box full of misc supplies.  Enough hopefully to keep us until we can get the new insurance for Caleb, or get him on Social Security. (if we qualify)
We should get out on Sunday or Monday morning at the very latest.  We are very ready to be home, although a little intimidated about finding our new normal.
Thank you for all the love and support you all have shown.  The prayers, facebook comments, meals, texts, we appreciate it all.  We are so blessed to have such wonderful support.

Love,
 Jessica

You can see his new button on his stomach, he is being fed so the tube has formula in it.  His belly button has gauze because they went in through it.  The other wires are all monitoring things.

Allison got to go bowling today for the first time!

Sunday-Tuesday Update

Sleeps with his eyes open, just like his momma

Sunday-
We continued the feeds through the tube and tried to recover from the previous 2 nights of not much sleep. Jason spent the night Saturday night and he at least got a real bed, although he said it was pretty hard.  So I brought some foam up to help with that.  They let us go home on a pass after his 10am feed.  It was so nice to see Allison and Jordyn and be home!! Caleb took a nap in his own bed but woke up after an hour because he was constipated.  Poor guy.  We fed him through his tube while he was home and everything went find with that.  We came back around 7pm and got settled back in.  Sunday night was a little better, I let him sleep with me, he wasn't having any of that metal prison they call a crib!















Monday-
Caleb had a sonogram to check his liver, kidneys, and pancreas.  It's something he hasn't had done before and Dr. Adams thought we should.  Not really connected to the feeding tube stuff, more about the Mito stuff. (he couldn't eat before the sono, but they did give him half a feeding afterwards. Only 2 oz! I guess they wanted him to be hungry for the next test)  Then he had a feeding evaluation at noon.  An OT and a speech therapist came and basically watched him eat.  They brought a few different textures and wanted to watch how he did with them.  He didn't really give them a lot to look at, he was pretty stuck on his jelly toast and the oatmeal.  He was so tired from 3 nights of pretty crappy sleep that he almost fell asleep in the highchair.  He did fall asleep after it was over and woke up about an hour later in the dentist's chair.  The dentist brushed his teeth, said they look good and sent us on our way.  We did talk about his diet and how the g-tube would effect his teeth, but that was about it.  Then Caleb came upstairs and crashed.  I think he slept for almost 4 hours.  It was more interrupted than at home, but he needed the sleep really bad.  Over all he was pretty grumpy and lethargic all day, so it was good that he got a few naps.

Dr Adams came by while he was sleeping and told me a few really exciting things.  First, he said the Sonogram looked good, no scarring on any organs and nothing bad going on. Then he said that the procedure on Tuesday will be at Children's so it is not covered by Scottish Rite.  However, he (Dr. Adams) made some phone calls and said it would be deeply discounted, and then Scottish Rite would cover the rest! How amazing!! We then discussed the surgery.  The g-tube is a for sure thing, they are just running tests to see if they need to do anything else while they are in there. He called up the surgeon and talked about the different possibilities but  the long and the short of it is he is going to help us not be in debt for the next 10 years because of the surgery! Again the surgery is at a different hospital so there is a cost (a ridiculous one!) Our insurance only pays a VERY minuscule amount for surgery so they are going to do a few things to help us. They aren't able to cover it like they are the emptying study, but they are going to to arrange it so we can get back here quickly and he said the surgeon has been known to "cut the bill" here and there.  I think it is so crazy that our Dr. is making calls to get us discounts.  Such a blessing!!


Our wonderful neighbors brought us dinner and he was very excited to see them.  It was the first time all day he had smiled.  (hard to believe I know!) So we ate and chatted with them for a while.  It was Jason's night to stay and he said it went pretty good.  Oh, Caleb has thrown up a few times since we have been here.  Once in the middle of the night, and once during the day.  He did throw up Monday night as well though.  They are monitoring and trying to look for a pattern I think.  He slept a little better, although Jason ended up sleeping in the rocking chair with him some of the night.

During the emptying study

Tuesday-
He wasn't allowed to eat this morning either. :(  We had to leave at 10 to head over to Children's. We got checked in and they needed to check the placement of his tube to make sure it was where they needed it.  So they took an x-ray, they ended up needing to pull it out 2 cm.  The worst part was taking off the tape! But they got it where they needed it and we headed back to the nuclear medicine department.  They fed him formula through his tube that was mixed with a mixture that would show up on the machines they had him under.  The test was called a gastric emptying study.  They wanted to look at the rate at which his stomach empties which would tell them if there is a problem with his guts.  He was pretty upset they had to tape him down to the table (just over his chest and stomach) and then they brought down this huge thing just a few inches from him.  Because he is so small it was really close to his face as well.  He tried to push it up, but that didn't work so well.  He cried for the first few minutes, but they had Barney playing and that distracted him for a while, then Jason and I took turns reading him some books.  It was an hour long and I thought he might even fall asleep, but not quite.  

Passing the time during the hour long test

We ate at their cafeteria afterwards and then went upstairs to see another Mito friend! We met them at the meeting in May and they were there because she was having issues with her tummy too.  (although she already has a g tube) So we chatted with them for a little while and then headed back to Scottish Rite.


Dr. Adams stopped by and gave me some pretty good news.  First he said that they got the Upper GI from last August and said everything looked good there, but that Caleb had reflux.  Um what?! They never told us that!! I was pretty aggravated that we could have had him on some medication this whole time! But anyway....He had the results of the study already! Caleb stomach empties at about 38% an hour.  A regular kid is in the 45-60 range.  So Caleb's is in the mild to moderately late category.  They are going to try and manage it with medicine and hopefully that will take care of it.  They will also start him on Prevacid tonight.

Cousins <3

He also said that Surgery is scheduled for 1:30 on Thursday afternoon!! This is such an answer to prayer!! If any of you have been reading my blog you will know it is no surprise that God sped up our timeline once again! I was hoping for a Thursday surgery, that would mean no days of just waiting, no prolonged NG tube.  Finish the testing on Wednesday and get him in surgery! It was a possibility that we would have to wait until the beginning of next week to get him in, but not this kid! He has divine favor when it comes to openings in Doctors schedules :)  They also said that they will keep him overnight, but let us go before 24 hours so they don't have to admit him.  So cool. Then we will come back to SR for 2-3 days.












Last awesome thing.  Caleb will now need a pump, bags, and formula for his feedings. These things are pretty expensive and our insurance covers nothing.  However, this kid is crazy blessed.  The dietitian has a pump that a family donated that she will loan it to us for as long as we need it. (we are currently switching insurance so that MIGHT cover it, or we are applying for Social Security for Caleb, and we are putting him on the Medicaid waiver wait list.  (it's for Medically dependent children but there is a 2-5 year wait list.  We will see what God can do with that!!) So the $2500 pump is taken care of.  She (the dietitian) also just had someone donate 40, yes FOURTY, CASES of the formula that Caleb uses.  That's 24 cans in a case. He currently uses 3 cans a day (which will probably increase to maybe 4) That's almost a YEAR supply!! Wait we aren't done yet.  Then I asked about the bags that the formula goes in.  Yea, the $5 a piece bags that have to be changed out each day bags.  Oh, yea she has 9 cases of those to give us!!! Holy cow!! I mean how blessed can one kid be?!


I'll end with this; I question why this is happening to my baby sometimes.  I tell God it's not fair.  I cry out to Him to heal him.  But one thing I know for sure, God is with us on this journey that we didn't ask for.  He has never left our side.  He goes before us and paves the way.  That has been very clear from day 1.  And that is the best thing I can hope for right now.  

Saturday Update

(I have been trying to write this post all day but it was a busy day!)  We met with the Dr. for over an hour and a half yesterday to form a plan for Caleb.  We really like this Doctor he is very smart and intuitive and asks all the right questions.  He asks questions that we have been wondering about as well and it looks like he is going to help us get to the bottom of some of them.  The main area of concern right now is Caleb's inability to gain weight and his recent difficulty chewing and swallowing due to his loss of muscle in his mouth.   So here is the low down:


We were admitted yesterday just after noon.  They asked us to stop feeding Caleb as they wanted to place an NG tube. (it goes through the nose and down the back of the throat into the stomach) That wasn't exactly fun! But finally they fed him formula through the tube.  (he hadn't eaten in 5 hours and it was way past his nap time.  He was pretty cranky) He gagged some on the tube over the course of the evening as he got used to it and he tried to mess with it some, but not too bad.

The doctor gave us a few reasons for putting in the tube.  He said that he wanted us to stop giving him liquids by mouth since there is chance he is aspirating them. He wants to give his lungs a break before surgery.  He also wants to beef Caleb up in prep for surgery. (he is getting over 700 calories just through the tube) They are letting him eat soft foods and he has been doing great with that.  (no gagging while eating, although still choking sometimes) There is also the added benefit that he is starting the process of getting his stomach used to the feeds now instead of having to wait until after surgery.  And Jason and I are also learning how to do it all now as well.  It will actually be easier when he gets the g-tube (a few less steps)

He hasn't messed with the tube at all today.  But he did tell some friends all about him getting it put in.  It was absolutely adorable.  Here's what happened-  I was telling them all about how it happened.  When I was done Caleb pointed to his throat and started "talking." Then he pointed ever so carefully to the tube in his nose and kept "talking." He was SO cute!! I'm praying for the day when we can understand what he says.

I should also mention that night time was really rough.  They only let 1 parent stay overnight so that was the first bummer.  Then I "got" to sleep on this ridiculous excuse of a bed called a fold out chair. I guess the good thing was I didn't really get to sleep in the chair much. (trying to look at the bright side) Caleb was up over half the night.  He only got about 6 hours of sleep.  (he normally gets 12) I got about half that amount.  It pretty much sucked.  Worse than having a newborn because I was in the hospital and in a crappy bed.  Oh and by myself! I guess the other good thing was that the lack of sleep didn't really bother Caleb that much today.  He was his happy go lucky self most of the day.  I got to come home tonight so I'm not sure how things are going tonight but I hope he is so tired that he gets good sleep.  (He hasn't been napping much either, his room at home is so nice and dark.  And he doesn't have people coming in every 2 hours hooking him up to a machine to eat)

Something the Doctor also said was that he probably has reflux.  That is very common in kids with low muscle tone. That is probably why he wakes up at night crying, and it would also explain the constant white on his tongue and the frequent spit up.  So they are going to check for that in one of the tests.

Tomorrow, Sunday, they are going to let us come home on a pass for most of the day then we will go back for the night.  Then starting Monday morning they will start the testing.  We start with a sonogram to check his kidney, pancreas, and liver. (he hasn't had those tested before and they can be issues with Mito kids) Then after that he has a Feeding evaluation with an occupational therapist.  She will watch him eat and begin to figure out some things about textures and other stuff that I don't really know. :) I think we will also meet with the Doctor who will be performing the g-tube surgery. He is also in charge of the testing on Tuesday so hopefully we can get the surgery date set then. (praying that it is Thursday so we can keep things moving.  Otherwise we will have to stay at the hospital until the surgery happens)  Tuesday-they are sending us to a different hospital for a Gastric Empyting Study.  This will help us understand how his intestines are working and make sure they are able to handle what we are putting into his stomach.  At this point I don't think there is any reason to suspect anything is wrong (he has handled all the feedings really well) but we will know more after the test.  Then on Wednesday they are going to do a video swallow test.  They are going to tag the food he eats so they can track it and see if it is going in his lungs or if it is coming back up with reflux.  Somewhere in there we are going to see the dentist at Scottish Rite also.

Ok, so it's about 3 hours past the time I wanted to be in bed and my eyes are closing while I type.  That's all my brain can handle for now (I have mixed up my words so many times today it's comical) so goodnight for now.

Much love,
Jessica

P.S. in my last post I forgot to link to the G-tube page, so here it is...G-Tube page

My Precious Punkin

Jordyn is my last little baby.  I try to soak in all the experiences I have with her knowing there won't be another.  It's hard because a lot of times she get overlooked, kinda like Allison does too.  Having a special needs kid is hard.

 

 

 



But the real reason for this post is when we first learned about Caleb's disease we were told that Jordyn could have it too but we would really know until she started to show symptoms. (or if she didn't then she is clear)  She has done a number of things that Caleb never did.  He never learned to push to a sit from a crawl.  He never would hold his bottle. Jordyn is 17 lbs right now! (Caleb is 17.8) At 18 months we couldn't get him above 16 lbs.  She continues to learn new things all the time! Oh and something else, when Caleb would eat solid foods (baby food) he would take a bite, then stick his thumb in his mouth to suck the food down.  We all thought it was just cute, but now I think it was more to help him swallow.  (Genius kid!) There are little things I remember him doing, and sometimes things I wonder if he ever did. (I have a hard time remembering the little things honestly)

So as time goes by Jordyn gets bigger and stronger and she is showing no signs of slowing down! She has 2 little rat teeth just like Allison did. (on the bottom) They are so adorable.  Love her to pieces.  Just thought I'd share.

Jessica

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