Answering Some Questions

In my "Blogging" Post, Dana asked a couple of questions that I thought I would answer.

How do we move Jack?

The answer depends on who is moving him.  Mark moves Jack by physically lifting him out his bed and into his wheelchair (and vice versa).  If I need to move Jack, I enlist the help of Jack's nurse or Hilary or Mary because it's a two person lift for me.  I haven't lifted Jack by myself since at least 2005. Jack's nurses move him using the ceiling mounted lift in Jack's room.  Yes, we should all use the lift, but I don't have the patience for it.  I've used it on occasion when I'm by myself, but I always feel like I'm going to break Jack in half when I use the lift.

Our insurance paid for the lift system.  I could have gotten a track system that would have gone from Jack's room to the family room, but I didn't want to destroy the doorways or have tracks hanging from the ceiling in the other rooms of my house.  Because we have high ceilings, the tracks can't be installed flush against the ceiling, they have to suspend from the ceiling.

Jack's nurse, Kristi, uses the lift to transfer Jack from his bed to his shower chair and then rolls the shower chair into the shower.  We have two slings for the lift, one for his wheelchair and one for his shower chair.  I would have loved to have a track that traveled to the shower, but we were told that they won't install a track in a shower due to safety reasons. In retrospect, I should have pushed the issue because I know people who have tracks in their bathrooms. 

The one thing I do not like about our set-up is that after Jack's shower, Kristi pushes his wet shower chair back to his room and uses the lift to get Jack back into his bed.  The problem is that the shower chair drips water from the shower to Jack's bed.  Not good for the flooring in Jack's room (pergo) and not safe given the flooring in Jack's bathroom (ceramic tile).  Kristi does a good job of drying the floor right away and so far, I haven't noticed any damage to the floor, but I'm sure it's just a matter of time.  

The State of Arizona has a program that paid for converting Jack's tub/shower area into a roll-in shower. The program also paid to put special hinges on several doors that allow the doors to open wider for wheelchairs and it also paid for a cement ramp out our front door.  

Jack's shower set-up

We transport Jack from place to place in our van.  We have a full-size van with a wheelchair lift.  I do NOT like it.  The lift takes up too much room in the van.  But, it's served it's purpose, so I can't complain too much.  For anyone contemplating a wheelchair accessible van -- get a rear entry lift, not a side entry lift.  I can't tell you how many times we are unable to use handicap spaces because there is no space to roll Jack off the lift once it is down. Even wheelchair accessible spots aren't always big enough. Our van has 130,000+ miles on it and we really need a new one, but I can't force myself to spend the $50,000+ to buy one.  Maybe someday ....

Dana also asked about using blankets to cover the vent circuits to keep the water from accumulating.  We've been having a lot of trouble with water accumulating in the circuits even with using the blankets.  I finally just turned down the heater to the lower setting and that - along with the blankets has kept the water at a minimum.

Here is a picture:

You just have to be careful NOT to cover up the peep valve. You can't tell from this picture, but the peep value is not covered with a blanket - it can "breathe" freely. 

Jack does not have a power wheelchair.  He got one when he was five years old and he was doing fairly well with it.  He wasn't great, but he did okay.  I personally didn't like it - it was awful to get in and out of the van - it was too heavy and too big.  In 2005, Jack suffered an anoxic event when he disconnected himself from his ventilator and he never recovered the strength to use his wheelchair after the event.  Although, I think it's the combination of the anoxic event and the effects of Jack's disease that prevent him from using a power chair.

As far as tips for building relationships with nurses and doctors - I think I've just been very lucky. 

I've always had a good relationship with Jack's nurses and I've almost always had good nurses.  When Jack first came home from the hospital, I had nurses in my house who knew more than I did about vents, trachs and Jack's care.  I listened to them, they listened to me and we had a mutual respect from the very beginning.   I'm not sure how or when the patient/nurse relationship became one of friendship, but Jack's St. Louis nurses have truly become my very good friends - especially Peggy.  Now that we don't live in St. Louis, we don't have to worry about crossing any "boundaries" - not that we worried about it much when we lived in St. Louis.  I'm sure it's difficult to build relationships with nurses if there is constantly a revolving door of nurses and when you do know more about your child's care than the nurses.  In my case, Kristi has been with us for eight years and it's not an overstatement to say that she knows Jack as well as I do.  

I also think a big factor with my success with nurses is that I am not home with them, so I'm not there to see every little thing that might annoy me.  Are there some things that Jack's nurses do that annoy me? Yes, but it's never been anything that puts Jack's life in danger.  I have very competent nurses caring for Jack and I'm comfortable leaving him in their care every day.  I don't like having nurses in my house when I'm home.  Not having nurses in my space keeps the tension at bay.  

I don't know that I have any advice for building relationships with doctors because I haven't had a lot of luck with the doctors out here.  Although, I have a great relationship with Jack's St. Louis docs (current and former).  The difference between the doctors here and the doctors in St. Louis is accessibility.  None of the doctors out here will give out their email, so I don't have the opportunity to establish much of a relationship with them.  They won't take the time to get to know me or Jack.  The key to my relationships with Jack's St. Louis doctors is that I had their email from the beginning and I used it - A LOT.  I used it a lot because I hated taking Jack to the doctors (still do) and if I could get my questions answered or orders called in using email and the telephone - I did it.  I asked a lot of questions, I questioned a lot of their decisions, and I vented a lot of my frustration.  They always listened and they always responded. To this day, I don't know why Jack's doctors put up with me - I was relentless!   Jack's situation was unique from the beginning because when he was discharged from the PICU, he was not followed by a pulmonologist, he was followed on his vent by a PICU Intensivist and a PICU Fellow.  Because these docs didn't have offices, I had access to them 24/7 via email and their pagers.  They both got to know me very well and we still keep in touch to this day.  It's important to not be afraid to speak your mind and know that you know your child and what you have to say is important, educated, based on experience and worthy of being heard.  It's also important how you present yourself.   Present yourself with confidence and without hostility or arrogance.    

This is what one of Jack's docs shared with me in an email.  Obviously, it meant a lot to me to hear that I had earned the respect of Jack's doctors despite my "forthright style":

"I'll tell you what you did to earn our respect.  You stood up for Jack. Period.  Never wavered. Always had his best interests first.  Often at the expense of your own.  Your forthright style probably can put off some insecure physicians.  But I think A, P and I only respect you more for your "attitude".  Please don't change - I've said it before and I'll say it again: you are the reason Jack is here and, within his potential, thriving."

And, I've never changed :)  

I could go on and on, but I've rambled on long enough so I'll shut up for now.  

Hope that helps some Dana (and anyone else who might have gotten something out of my ramblings).

Tomorrow is a day off from work .... oh happy day!