Monday, July 26, 2010

Back to School

As I was typing the title to this post, it filled in the letters automatically. Which means ... I've already used this title before.  Oh well, I can only come up with so many original titles in a four year blogging span.

Yes, school is back in session and the kids are none too happy about it.  I'm not thrilled either because I'm so not ready for the homework battles with Eric every night.  

Mary is a senior this year. I swear she just started high school.  They grow up way too fast.  

First day of school senior year.  Not a worry in the world . . . or a backpack or a lunch!

Eric's first day of school.  See the kid with the green plaid backpack who is laughing?  The first thing he says when he sees Eric, in an exasperated tone: "Eric, you have the SAME backpack you had last year!"  Hey kid, Shhhhhhh .... Eric is just fine using the same backpack again!  Who knew that little boys cared about getting new backpacks every school year?  Fortunately, Eric could care less about getting a new backpack and he's happily used the same backpack for the last three years (a great purchase from Lands End).

Looking around in the sea of kids .... 

Finally .....

a recent picture of me and Jack.  

I needed a picture to submit to CureCMD in connection with the LA 1/2 marathon I am walking in October.  I don't like this picture because I look old.  Fact is, I AM old.  But, I suppose it beats the alternative, so I will joyfully accept the wrinkles, grey hair and bags under my eyes  because I am afforded the privilege of life.  Well, I might not joyfully accept the consequences of my age, but I'll accept them nevertheless. 

That's all I've got from the Schrooten Ranch. Wishing you all a wonderful week!

Monday, July 19, 2010

Disney Pics

We had a GREAT time at Disneyland/California Adventure. I really enjoyed spending some one-on-one time with Eric.  The last time Eric was at Disneyland he was 4 years old and he doesn't remember much.  This time around, he really got into it.  Because he went with his much older cousins, he was forced coerced to go on a lot of rides he would have preferred not to go on.  You have to know that Eric is deathly afraid of heights, so much so that you can't even pick him up without him panicking.  Somehow, we got him on Thunder Mountain (multiple times),  the Matterhorn and another roller coaster ride in California Adventure.  His favorite rides were the cars and Pirates of the Caribbean - which he and I did together numerous times.  I made him go with me on my favorite ride - Small World.  But, his cousins had already convinced him that the ride was "torture" and filled with "Chuckie" dolls, so he spent the entire ride mocking it.  Oh well, it's still my favorite ride and I'm okay going on it

It was great to have so many of the cousins together and with Mary being in a wheelchair, it was as good as a fast pass - which made her cousins very happy.  I think the last time we had this many cousins together at Disneyland, a few of them were still in diapers and we were pushing them around in strollers.  Time flies!

Here are some pictures for your viewing pleasure :)

The family.  We were a strange little band of characters trudging through life sharing diseases and toothpaste, coveting one another's desserts, hiding shampoo, borrowing money, locking each other out of our rooms, inflicting pain and kissing to heal it in the same instant, loving, laughing, defending, and trying to figure out the common thread that bound us all together.  
~Erma Bombeck

Friday, July 16, 2010

Going to See Mickey

In a spur of the moment decision, I decided to take the kids to Disneyland this weekend.  I, along with three of my kids, a bunch of cousins, and my sister will be spending the weekend at the Magic Kingdom. Thank you Kristi for helping out with Jack this weekend! (I would have no life outside of my house without her.) I wish Jack could come with us, but we missed the window of opportunity for him to enjoy Disney -  when he was small enough to hold on our lap. There's little he could do at Disneyland, although I suppose there is lots for him to see. However, Disneyland in July is not the best time (weather) for sightseeing.  In any event, it's the last hurrah before school as Mary and Eric start back to school a week from Monday.

Have a great weekend and thanks for checking in.

Wednesday, July 14, 2010

This Kind of Stuff

Yesterday, Kristi called me at work to ask if I knew about the bruises on Jack's pinkie finger.

I did not.

When I got home, I saw this:

I have no idea when or how this happened*, but this kind of stuff just breaks my heart.  It kills me that Jack was hurt and he couldn't tell me about it. Yes, it's only a sprained pinkie, it looks worse than it is and in the scheme of things, it's not that big of a deal ....  but it still bothers me. It's times like this that I wish - oh how I wish - that Jack could talk.

But he can't.

And I hate it.

But,  he's still happy.

So, I can be too.

Except when I look at that bruised pinkie.


*Jack wears hand splints at night and I'm always very careful when I put them on that all his fingers are straight. I'm wondering if I missed his pinkie the other night and perhaps it was bent back in the splint.  Makes me so upset to think that might be what happened.  I really haven't a clue and I don't recall Jack crying anytime the last few days.  *sigh*

Sunday, July 11, 2010

Sunday at the Lake

While Jack was safe and comfortable in the care of the Ryan House staff, I snuck away for half a day and enjoyed a day at the lake with my sister, brother-in-law and niece. It was fun and "Africa hot". But, if you're going to be out in the Arizona sun, there's no better way to spend it than on a boat on the lake.


For those of you who didn't hear the story on FB .... I got a phone call from Eric on Friday telling me that he'd just had a large black ant removed from his ear! I'm not sure how he got an ant in his ear, but, fortunately, Peggy's husband is a pediatrician, so he had the necessary instruments to pull the thing out of Eric's ear, which saved them a trip to the ER.  Peggy said in 30 years of practice, her husband has pulled a lot of things out of kids ears, but he said this was the first time he's pulled a live ant from an ear.  Eric told me he's not going outside anymore!

We're all anxious to get Eric back home .... it's too quiet around here.

Have a great week everyone!

Friday, July 09, 2010

Yeah, It's Friday.

How come short work weeks always feel like the longest?  I'm so ready for the weekend.  We are spending another weekend at the Ryan House.  As you have probably noticed, we are trying to spend one weekend a month there to get the staff used to Jack and Jack used to the staff. I'm not sure when I'll be comfortable leaving Jack by himself there, but the hope is that some day I will get to that point.  We'd like to visit my brother in Florida next March during Spring Break, so hopefully by then.

This weekend I won't have Eric with me, so I actually might get some respite.  I didn't tell Eric we were going to the Ryan House because I was afraid he wouldn't get on the plane to Peggy's.  As much as Eric loves Peggy, he likes the Ryan House equally as much.  The news from St. Louis is that Eric is having a great time.  I hear it's humid and rainy ... all the better for a bug-guy like Eric :)  It sure is quiet around here without Eric, but, I'll be honest, it's a nice break to just have one kid to get ready for bed at the end of the day.  Eric fights me every step of the way at bedtime, so it's been nice not having the bedtime battles.  Oh, if only someone would force me to go to bed at 9 o'clock every night!

Last night, I put together the pots you see below to take to the Ryan House, courtesy of The Willow Tree Foundation. The pots contain bubble bath, lotion and lavender scented and shea infused lounge socks from Bath and Body Works.  I dropped off a set of pots back in April and the word is, the families really enjoyed them.  It's nice to be able to support the Ryan House, if only on a small scale.

Thanks for checking in.  

Wishing you all a great weekend. 

Tuesday, July 06, 2010

Camp Peggy

Eric left for St. Louis today to spend a week with our dear friend Peggy.  I wish I could have gone with him!  He was a pro and wasn't the least bit nervous about flying as an "unaccompanied minor" (at least not that he let on).  He arrived safe and sound and I know he will have a fabulous week of fun.  Peggy has three grown sons, so she knows all about boys and what they like to do (and she has the patience of a saint).

We already miss his sweet face, but I'm sure he's got Peggy and family laughing at his stories and antics.

Pre-flight snack

Making his way to his gate

Hanging out with dad

and mom

passing the time waiting to board

Sunday, July 04, 2010

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!