Tuesday, September 25, 2012

Update of All Sorts

Our trip to St. Louis is around the corner and I'm somewhat prepared.  I packed Jack's bag of supplies over the weekend. I basically went through his closet and pulled extras from every drawer and box I could find. After I finished and zipped the bag up, it occurred to me that I might want to write down what I had packed so that I could go through the list before we leave and make sure I have everything.  I've definitely come a long way from our first trip to St. Louis when I had lists that I double and triple checked. I've learned to throw his supplies together fairly quickly because of all his stays at Ryan House.

We've now added a new piece of equipment to our list.

I know many of my friends have had feeding pumps since the time their kids first came home from the hospital.  This was just another one of those things that I fought hard not to acquire from the very beginning.  We lasted almost 14 years.  I feel like we are going backwards.  The only reason we need the pump is because the nephrologist wants us to get more water into Jack and the only way to get the volume she wants is to give him water through the night, and the only way to give him water through the night is with the feeding pump. So, he now gets his night time can of formula and a bunch of water over 10 hours at night.  Add a bunch of water, along with the maintenance antibiotics and well, you can just imagine.  Needless to say, there is very little down time now when it comes to Jack's care.

But,  . . . he is so totally worth it.


After getting two different opinions from two nephrologists on how to manage/prevent Jack's kidney stones, I decided to add an appointment with a nephrologist in St. Louis to our list. I was surprised that I could get a new patient appointment with only a week's notice.  I think the fact that we come from out of state and they could see in their system that we have appointments with other doctors throughout the week probably helped our cause.  We will now be seeing seven doctors in four days.  I really don't think Jack can be managed long distance by the St. Louis nephrologist and/or urologist, but I'd still like to get their opinions on what's been found, what's been done and how it's all being managed.  Jack's toughest day will be next Friday - he has to be at the hospital by 6am for a bronch and EUA and then has an appointment with the nephrologist at 1:30pm and the urologist at 2:15pm. It's going to be a very long day for both of us.  I haven't yet figured out when I'm going to have time to visit my St. Louis friends because our days are so jammed packed with appointments.  But, we will make it happen, we just have to!

In the past, we've always made the drive over two days (except for last year), but it's now a three day drive (each way) because 8 hours a day in the car is about all Jack -- and Mark and I - can manage.  This year we are doing things differently because we are renting a motorhome for the trip. There is just no way Jack can handle the trip sitting in a van seat the entire time, nor can we manage all of Jack's care while he is sitting in the seat.  We are getting a medium size motorhome which has a big bed for Jack to lay on during the drive.  Needless to say, Eric is very excited for the trip!  Once we get to St. Louis, we're renting a wheelchair accessible van because we can't exactly park a motorhome in the parking garage at Children's Hospital.  It's definitely not a budget trip, but . . .

 . . . he is so totally worth it. :)


I exchanged emails with Jack's former pulmonologist, who is now in Florida, to give her an update on Jack and ask her some questions regarding his vent settings.  After hearing about Jack's pain issues, she said that one of the things that she sees a lot in her neuromuscular patients as a source of pain is compression fractures.  If you recall, compression fractures were mentioned by another doctor friend of mine earlier this summer and our local orthopedic doctor said that Jack couldn't have compression fractures because he is fused.  Just to confirm, I emailed our St. Louis ortho and asked him the same question and his response was "Dr. White is correct".  Good to know.   That being said, I'm definitely going to ask our St. Louis ortho to take a good look at the x-ray he will be getting of Jack's spine to make sure there is absolutely no possibility that Jack's pain is spine/orthopedic related.


Remember how I was told to call the Pain Clinic by my pediatrician?  I called.  I was told that we have to be referred by our pediatrician, he has to send in the referral and Jack's records and then they will decide if they can help Jack.  I'm thinking the Pain Clinic is not going to be our answer.  I'm also not sure our pediatrician is the best fit for us at this stage of the game.  I need someone who will step up to the plate and try and help Jack, not refer us out.  I've got the name of a few pediatricians who care specifically for kids with special health care needs and who are also palliative care doctors.  It's something I'll work on after we get back from St. Louis.


Jack has had a decent week.  He's not particularly happy, but he's not super stressed either. He's just kind of "blah".  While I'm not really expecting to get a definitive answer to what is going on with Jack when we are in St. Louis, there's always hope that someone can shed some light on what is going on.  I'll just be happy if Jack can get through the week without the need for bagging.

And, on that note .... you have my rather disjointed update.

Thanks for reading.

Thanks for caring.


The "Just Keep Swimming" bracelet I ordered
(it's my new mantra)


Anonymous said...

Always glad to see an update on my sweet Jack. Prayers for a safe trip to STL and good news from his team.

Eric said...

With the overnight fluids better double up on diapers!
Wishing you a safe journey and one without stress. As always you are on top of things, more than can be expected; your care is what love is all about.

Jennie said...

Praying. I think of you all so often.

bettyd said...

We all know Jack and all our kids are worth it :) maybe not the path we expected but a great part of our lives.

Clara said...

Wishing you a good trip to St Louis, praying for Jack to be stable, praying for wisdom for the doctors, and Strenght for you and your family, you're right he's so worth it! Thank you for sharing your Jack with us!

ssouth said...

Use me any and all ways you can while you're here. We'd love to have Eric over to play too. I'll come get him. I'm dismayed about the new beeping machine and all the new care Jack requires. Any chance of some night nursing?

Susan said...

Really? You never had a feeding pump? Maybe it will be a good thing but maybe the day nurses could give him the fluids so you don't have to use it at night. It will wake you at times.

Anyway...it's great to get an update. I'm glad that Jack's pain level seems managed. I hope the St. Louis trip yields some insight.

Lastly, at our hospital in Seattle they do allow motor home parking in a side lot near the ER. It might be worth a call. I hope you have a good trip and get to squeeze in some fun. It sounds like a fun adventure to go in a motorhome. I think it's brilliant.

Elizabeth said...

Have a safe trip and I hope you get some answers and solutions. We think of you often and Jack is always in our prayers!!!
Take care!!!

Tammy said...

He sure is worth it! You will all be in our prayers as you travel. I hope all goes well for Jack and that the doctors there can help him out. Once you are back, we will have to have Eric come over again. The boys had a great time. ...Eric did forget to take his scorpion home with him though. No worries, I'm sure we can find another one for him when he visits again! :) Have a safe trip!

Christy said...

Wow. Crazy that you've never had a feeding pump before! And I know what you mean about going backwards.

Love the motor home idea! Sounds great! I hope you have an uneventful trip and that you get some very helpful information.

Big hugs from VA!
Christy xo