Sunday, October 10, 2010


We are half way home after an eventful week in St. Louis.  This year's trip didn't go as smoothly as the last one, but all in all, not a bad visit.  To recap:

Cardiology: Echo and EKG showed no problems.  Due to Jack's low heart rate when sleeping (low 40s), they did a 24 hour holter monitor. Of course, because it was a stressful week for Jack, his heart rate didn't dip in the 40s like it typically does.  I don't expect the holter monitor to reveal any "bad" news.  I was told, if everything looks good, I won't be hearing from them.

ENT: Ears were cleaned out and bronch showed a good airway.  No granulation tissue or erosion issues.  We are changing Jack's trach to a Bivona flexTend with a different flange and switching from TTS to an air cuff (this will make no sense to my non-trachy friends).  I'm not sure if we are upsizing or not.  The trach nurse was going to talk with the ENT regarding the results of the bronch and then decide whether Jack needs a bigger trach. I'm thinking he doesn't.

Neurology: We really don't get any "news" at these visits.  Jack's issues are obvious. Contractures are Jack's enemy right now.  We can do range of motion and stretching, but there really is no way to prevent contractures from happening.  The biggest concern I have is the jaw contractures because it will be an issue should Jack need any work done on his teeth. Essentially, Jack won't be able to have any work done on his teeth because you can't open his mouth wide enough to get in there.  After our "medical" visit with Jack's neurologist, we went to lunch with her and got to have a social visit.  Jack's neurologist is a great doctor and a good friend.

Orthopaedic: See prior post.  Not sure what to do regarding the broken screw.  I'm going to make an appointment with Jack's local ortho and get his opinion.  I suspect he'll say the same thing as the St. Louis ortho - if it's not hurting Jack, there is nothing to worry about.  It's hard not to worry about what I see in that x-ray!  As for how or when the screw broke - I really don't know.  Jack had an x-ray taken back in March by his local ortho and the screw wasn't broken then. So, it happened sometime within the last seven months.

Ophthalmology:  This appointment is the one causing us trouble.  Because Jack had congenital cataracts, he is at risk for glaucoma.  After doing the EUA, Jack's ophthalmologist told us that the pressures in Jack's eyes have been consistently rising the last six years.  He said he always draws a picture of what he sees when he does an EUA and, while the pressures aren't dangerously high, the changes he's seen in his pictures over time has him concerned.  The risk with high pressures is blindness.  Jack doesn't need to add blindness to his list of ailments.  So, the ophthalmologist wants to see Jack back in 9-12 months.  Ugh! He gave us drops we have to put in Jack's eyes everyday and then he'll do another EUA when we come back. The treatment for the high pressures is another eye surgery.  Because Jack's ophthalmologist has been following Jack since he was 13 months old and because he has been doing the EUAs and documenting the changes in Jack's eyes, I really don't feel like this is something that can be handled locally.  And, at the end of the day, as much as I hate the drive to St. Louis, I have confidence in the doctors in St. Louis and I don't have the same confidence in the doctors in Phoenix.  I wish I did because it would make life so much easier, but I just don't.

Eric saw the ophthalmologist too and he got good news - his eyes are improving and his new prescription isn't as strong. Yeah!

Vent Issue:  Apria gave me a hard time because I didn't let them know two weeks in advance that I was traveling.  They claim that if they knew I was traveling to St. Louis, they would have had a plan in place ahead of time in the event of equipment failure.  I highly doubt it. I told the Apria rep that there was no way they were going to place blame on me because they had to scramble to get me a replacement vent. I couldn't believe the hassle it was to get a replacement vent.  Apria is a national company and they should have more than one backup vent in the entire state.  Seriously people, buy more vents!  They made us drive to Illinois to pick-up the vent - which was b.s.  They should have delivered the vent to us - we are the customer.

Visiting with Friends:  As always, we had a great time visiting with our St. Louis friends.  We stayed with friends we knew from Phoenix.  We lived in the same apartment complex when we were both young and childless. They moved to St. Louis before we did and have always been there for us over the years. We also had fun visiting with Jason, Jenny and their boys, Ben and Alex.  Eric especially enjoyed playing with boys who like Lego as much as he does.  Eric also spent the night with one of Jack's former nurses who has a little boy the same age, who likewise loves Legos.  I think Eric had a good time in St. Louis.

My Mom:  While we were in St. Louis, we learned that my mom's brain tumor is back and she is deteriorating really fast.  She is now in a hospice facility and doesn't have too many days left with us.  She's had a difficult and painful road following her initial diagnosis of a GBM in July 2007 and her body is tired.  Your prayers and good thoughts for my mom and my family are appreciated.

That's the recap and update from here.  Tomorrow will be another long day, but at least at the end of it, we will be home sweet home!


betty said...

Ann -

I am so sorry to hear about your Mom. There are no words to say, but you are in our thoughts.

As you may know, Will is "legally" blind, but in his case it is pretty much totally blind b/c it is a brain problem that can't be fixed. I really feel this is his biggest issue, and it is one that can't be changed. I just know there is some more communication in there if he could see. But, enough of me. My point was just that DO WHAT YOU HAVE TO to get it taken care of.

I know you will do what is best for your Jack, even if it means another 2 day drive in 10 months!

- Betty

Rachel said...

Ann, Phew, what a whirlwind week. I'm sorry the doctors appointments didn't go as smoothly as could be. Was thinking of you all week... had tempting thoughts to drive out to MO since it's about halfway between us :) I can't even tell you how angry it makes me to hear about Apria! Ugh!!
I'm sorry to hear about your mother. Hugs always!

The Hogan family said...

What a busy week! I know it feels good to have it done but it sure must be exhausting. Best of luck as you finish your trip home. I am very sorry to hear about your mom. You and your family will be in my thoughts. Hopefully she can rest comfortably and be without pain. Thanks for keeping us up to date with Jack!

worthy said...

Sorry things didn't go as well this time, hope something can be done to help Jack's eyes, sorry that you have another long drive to look forward to.
I hope your mom is comfortable, she has fought this tumour long and hard, my thoughts are with you all.
Hope the remainder of your journey home is uneventful. drive safe my friend xxx

ssouth said...

Looks like there's more damp dancing heading your way. So sorry the news isn't better. It was really wonderful to see you and I'm not sad to have another chance sooner than expected, but just wish it weren't for these reasons. Hang in there, longer, my friend.

Anonymous said...

I'm sorry about the news on Jack's eyes and the broken screw. I do hope there is something that can be done for his eyes, and I hope that screw doesn't give him any pain or discomfort.

As someone who has gone through a terminal cancer diagnosis with a parent, I am so sorry that you are going through it with your mom. I pray for her comfort and peace.

Selfishly, I am sad that we no longer live in St. Louis--I am really disappointed that we didn;t get to see you and Jack this time.

Take care.

Grace and Peace,

John and Jenna Gensic said...

That is frustrating that you guys had to drive to retrieve a back-up vent. Sometimes home care is annoying. We haven't been too happy with the response from ours when we needed "emergency" equipment either.

Sorry to hear about your mom. Your whole family is in our prayers. I check in every once in awhile and you guys are on my prayer list.


Anonymous said...

I wish I could find the one thing that would make your world a little less stressful. I hope your drive home is uneventful. I am glad Eric enjoyed himself and hope he is enjoying his ride home. My thoughts and prayers are with your family and mom, I hope that she is comfortable and surronded by those who love her. As alway Jack is in my thoughts and prayers because I love him!
Miss you my friend - sending lots of hugs.

Susan said...

Ann I am so sorry to hear this news about your mom. Love and hugs to all of you.

You week sounds very tiring but it's great to have it done I bet. It is really too bad you can't trust your local doctors. But I'm glad you do trust the ones in St. Louis. The eyes are not to be messed with, so I agree you gotta go where you gotta go. As for the screw I would have thought that was doing a job keeping the spine straight. I just can't imagine what it would take for it to snap like that. Yikes. Although the prospect of replacing it doesn't sound so great.

I'm glad you're on your way to home sweet home.