Saturday, March 31, 2007

Melancholy Day

It looks like our new nurse is not going to work out. He is a good nurse, just not a good match for Jack -- he's a bit too high energy and did some things that have us concerned about Jack's safety. I've been so fortunate with nursing over the last 8 years, yet when issues do arise . . . it gets me so down because I'm reminded that I'm in this for the long haul and the realization that my child's comfort and life is in someone else's hands every day is overwhelming at times. I then worry about what would happen if I died before Jack, I mean how many parents hope their child dies before them? But, I can't imagine not being here to watch out for Jack and make sure he is taken care of. I can't even fathom Jack being placed in a facility because we are no longer around or not able to care for him.

Anyway .... as you can see, a simple thing like an issue with a nurse just resurrects my deepest fears and then I get all melancholy about the whole Jack situation. Needless to say, I've been in a lousy mood today. It doesn't help that I've been stuck in the house because Mary was in a basketball tournament that lasted most of the day and Mark took her. Just another reminder of how my life is so much different than most -- if Jack was a typical 8 year old, we all would have been at the basketball tournament and spent the day together as a family.

To top off my mood, I made the mistake of looking through a CD we got from St. Louis Children's Hospital last summer that has a bunch of Jack's x-rays loaded on it. Another reminder of how "fragile" Jack really is -- his bones are the size of twigs:

A CT Scan from the summer of 2005

I'm getting up early tomorrow and going hiking with my friend -- which is usually good for an attitude adjustment.

Thursday, March 29, 2007


Eric came home from school with this ... I thought it was too cute not to share (so humor me and tell me you agree :-)

Jack has recovered nicely from my deviation from the acceptable standard of care. He's appropriately humidified and back to his happy ol' self! I can't imagine anything worse than having to rely on other people and/or machines to provide for every single need in your life - especially when a mistake by the people you rely on can be devastating. It breaks my heart ... but, I just tell myself that Jack doesn't know any different (that is about relying on others, not about mistakes being by people he depends on - fortunately, those are few and far between.)

Have a great Friday my friends.

Tuesday, March 27, 2007

A little humidity is a good thing

It's only Tuesday, but I swear it feels like Thursday. How can I be so tired already and it's only Tuesday? Jack had a rough day today -- which doesn't surprise me. I had noticed over the weekend that Jack's secretions were really thick and, last night I figured out why. I remember changing the bag of water that fills his heater chamber (the chamber that heats the water that humidifies the air that he breathes) some time on Saturday. Last night I noticed that the heater chamber was completely dry and the bag of sterile water was completely full. I'm guessing that when I changed over the bag, I didn't make a complete "connection" and the water couldn't flow from the bag to the heater chamber. Bottom line ... Jack went over 2 days breathing dry air. NOT A GOOD THING! Those of us who breathe the way nature intended add moisture to the air we breathe when the air passes through our nose. Because Jack doesn't breathe through his nose, we have to create artificial moisture by running the air received from the ventilator through a heated water chamber. Anyway, after I noticed the problem last night, I spent several hours (well past midnight) giving Jack saline nebs and suctioning quite a bit to get what was essentially concrete out of his lungs. When our new nurse showed up today, I gave him a heads-up. Apparently, Jack's day was just as I predicted. I say "apparently" because Paul called Kristi when he became concerned about Jack's high heart rate and breathing. Of course . . . no call to me. Kristi then called me to give me a heads up. Long story ... long ... Jack looked completely wiped out when I got home from work. And those eyes he gave me . . . they spoke volumes about how his day went -- they are so tired. He's not sharing any smiles with me right now either.

I guess there's a reason they call kids like Jack "medically fragile". They can turn on a dime and when they do, it's not something you can fix with a kiss and a bandaide. It's this constantly being either in crisis mode or on the verge all the time that is so wearing. I'm worn out . . . but, this time it's my own fault ... I created the crisis!

Tomorrow will be a better day, I'm sure of it. Onward we trudge ...

Monday, March 26, 2007

Friday, March 23, 2007

What's in a number?

Jack's week can be summed up by the following numbers:

Translation: F-A-N-T-A-S-T-I-C

For those of you who don't monitor your kids on a regular basis .... the number on the left is Jack's oxygen saturation (it doesn't get any better than 100% - and Jack is not on supplemental oxygen) and the number on the right is his heartrate (for him to be below 100 is great.)

It's been a good week for Jack and thus, a good week for mom! We are having a birthday party on Sunday with family and friends to celebrate Eric and Mary's birthdays; I'm NOT going into the office this weekend; and the weather couldn't be better. We are looking forward to a great weekend to top off a great week. I'm also working on a blog-thought .... stay tuned ....

Have a great weekend my friends

Thursday, March 22, 2007

The Lost Art of Conversation

Whatever happened to people talking to each other to pass the time? I took these pictures this morning on the way to school - no sooner do the girls (Mary and her friend, Nicolette) get in the car and on go the iPods and out come the video games and/or books. I suppose it's my own fault . . . afterall, I did supply my kids with all the latest and greatest gadgets. I'm not without any conversation however, Eric is sitting in the very back of the car talking non-stop to whomever will listen!

On the Jack front -> Jack is having a fantastic week. The botox has kicked in and the drooling has slowed way down. In addition, because Jack doesn't have as much saliva, he doesn't aspirate it (which he tends to do because he doesn't swallow well) and he needs very little suctioning during the day - always a good thing. The new nurse is great -- to say he is high energy is an understatement :-) Mary thinks he is "cool" because he shows up with a bag full of great DVDs for he and Jack to watch. He is so good with Jack and always has him laughing. It's been such a refreshing week to have nothing to worry about.

Monday, March 19, 2007

Lift off!

I finally learned how to use Jack's lift this weekend. It's not exactly rocket science -- it was just a matter of finding the time to sit still for 5 minutes and listen and learn! (you'd think I was a 5 year old with ADHD). Anyway, Jack loved swinging in the sling and we were able to sit him back in his throne (the couch) for the first time since last July. Wow! There are a few adjustments that need to be made to the track, as it is too low to allow us to lift Jack completely out of his chair (we have to manually lift him over the armrest of his wheelchair) but we should have that issue resolved within the next week or so. I also don't like the fact that he has to sit (or lay) on the sling until we get him back into bed. Oh well ... there is always something to be bothered about, I suppose. At least this one is a small bother.

The nursing drama continues. We've got a different nurse starting tomorrow and he will be working every Tuesday and Thursday. I did not ask our Friday nurse off the case, it just so happened that this new nurse was just freed up from a case and Kristi really wants to only work 3 days a week at our house. They asked me if I'd be comfortable with a male nurse and I am (I think ... kinda, sorta ... I don't know?) I hear this guy is just wonderful with kids, very high energy. My concern is that he will become bored with caring for Jack because, we all know that Jack is anything but high energy. Wish us luck that this nurse works out.

We hope all is well with our friends out there in cyberland who check in on us regularly. We love you guys!

Happy to be back on his "throne"

Lift off!

Friday, March 16, 2007

Happy St. Patty's Day

May green be the grass you walk on,
May blue be the skies above you,
May pure be the joys that surround you,
May true be the hearts that love you.


Some may say the glass is half empty,
Some may say the glass is half full,
But the Irish will forever say
"Are you gonna drink that?"


Mary and a couple of other girls put on a short Irish dance show for their school yesterday. Here is a video clip of one of the dances Mary performed. She is not wearing the traditional dress and wig because it was too hot outside. Mary has a full day of performances today - she is dancing at 5 different events - starting with the St. Patrick's Day parade and ending tonight with a performance at a private party. I haven't seen Mary since yesterday morning (she spent the night at a friend's house). However, tomorrow is her 14th birthday, so I'm guessing she'll find her way back home for that!

Wednesday, March 14, 2007

Do it Anyway

The other day I was hanging out in bed with Jack, holding his hand and I got to thinking that not many of you have met Jack in person and really have no idea how much his disease has affected his ability to move his body. The decline in Jack's physical strength has been fairly rapid over the last few years. Jack is able to move only his hands, and even then, his hand movement is very limited. So, I got out my camera and shot some video clips of Jack in "action". As I was looking through the video clips, the thing that struck me the most was not Jack's limitations, rather it was the patience and persistence he displayed as he worked to achieve the task at hand. Although Jack doesn't always "succeed", he always gives it his best effort. After watching this video, I hope you can get some sense of what a special little spirit Jack is ... he truly is my life's teacher. He keeps me grounded and he reminds me daily of what really is important in life. I hope you enjoy the video and if Jack can teach you anything, it's to "do it anyway".


My sister just called to tell me that every time she watches one of Jack's videos that I put together she feels like she is attending his funeral. That certainly isn't how she (or anyone else) should feel. My point in sharing these glimpses into Jack's life is becaue I feel Jack can teach all of us a thing or two by the way he lives his life. Jack still has a lot of life to live and I still have a lot to learn from him. My videos are not intended to evoke emotions of sadness. I truly believe that Jack eas sent to deliver a message -- perhaps a message directed only to me, but this forum allows me to share what I learn from Jack with all of you. So, when you think of Jack ... think happy, not sad thoughts.

Monday, March 12, 2007


The birthday boy and his bugs!

Birthday sundae at the Cheesecake Factory

Eric is still into bugs and he added more to his collection this birthday. We took him to the Rain Forest Cafe to do some bug shopping, but decided to each lunch at the Cheesecake Factory. In the video clip, Eric is naming all his bugs for you!

Jack tolerated his botox injections fairly well, although not without tears. He had a great time at the Cheesecake Factory and then walking around the mall afterwards. Kristi called out sick today, so Mark had to take the day off - which was nice because we spent the day together with just the boys.

Sunday, March 11, 2007

Another Busy Week

Jack got a much needed hair cut this weekend. Thank you, Michelle. We have another week of appointments. Jack sees the neurologist tomorrow for botox injections into his salivary glands ("OUCH"). This is done to help reduce Jack's oral secretions and thus, his drooling. He is supposed to have the injections every three months, however, Jack hasn't had the injections since last June, for obvious reasons. The appointment is at noon, so I'll be heading into work before the rooster crows so I can get in a few hours before I have to leave to get Jack to his appointment. On Tuesday, Jack sees the dentist, so there is another 1/2 day missed of work. Now you understand why I work late and on the weekends ... working in a profession that lives and dies by the billable hour is not compatible with having a medically involved/special needs child. While I do have the flexibility to take off when I need to, the number of hours I have to bill each month is not as flexible. Needless to say, I'm always playing catch up and ... I've yet to catch up!

Tomorrow is Eric's 5th birthday. The plan is to go to lunch at the Rain Forest Cafe (terrible food, but a fun place for the kids) after Jack's appointment. Hopefully, Jack will be up for it. I'll be sure and bring my camera.

Hope you all have a grand week.

Thursday, March 08, 2007

Quiet Week

The Thinker

Not much to update as this week has been relatively quiet and I have no words of wisdom because I haven't taken the time to sit down and put my thoughts into words, and God knows, I've always got thoughts! I was talking to a friend of mine last week and we've both decided that I do too much thinking. Everything is always so "deep" and I spend so much energy analyzing and pondering the meaning of life. My time would be better spent living life! It's such a challenge for me to just "let it be". I've tried to keep myself out of deep thought this week and, consequently, I have nothing to write about ... imagine that! I'm sure it won't be too long before I come up with some rambling, meaningless, wordy post. After all .... I AM a thinker.

We did take the plunge and put Jack in his sling/lift this week. The guy who helped us pick out the lift system came by the house and gave Kristi an inservice and she has been using it the last two days. Now we need Kristi to give us an inservice. Once I figure it out, I'll post pictures. I hear Jack really enjoys the ride!

Tomorrow is Friday ... new nurse day. Wish Jack luck, please.

Friday update: When I got home from work, Jack had the deer in the headlights look ... I don't think it was a great day.

Monday, March 05, 2007

Happy Monday ...

Well, almost Tuesday for some of you. We had a very busy weekend re-arranging and organizing Jack's room. He got a bunch of new furniture to help me organize. With a little help from Target and Ikea -- Jack's room looks pretty cool - he loves the big canopy leaves over his bed. I'm thinking of having someone come in and paint a "headboard" on the wall. Mark had to assemble all the furniture and said he needed a walker to get around today because he was hurting so bad! It was quite the challenge to make Jack's room look as "normal" as possible given all the medical equipment he has. I hid most of the stuff, but couldn't find a place to hide the cough-assist machine (or the vent :-) The pictures aren't very good because of the nightime lighting -- but, as you can see, Jack isn't the only one who is enjoying his new environs.

Not so sure about the Friday nurse yet -- I found out from Kristi that she called Kristi on Friday because Jack's heart rate was over 170! Not sure why she didn't call me instead? (actually, I'm quite certain why she didn't call me :-) Jack had a rather crappy weekend ... not sure how much was related to Friday. I'm not particularly looking forward to this Friday. I just hate this ... *Sigh*

Friday, March 02, 2007


Jack's new nurse did fine today ... Jack was alive and happy when I arrived home! I'm a little more "alive" today as well. Thank God it's Friday ... Saturday is my day to sleep in. Have a GRAND weekend everyone!

Thursday, March 01, 2007

Jack's New Bed

Jack's new bed arrived and it's wonderful. Even though it's a queen, it doesn't seem that big. We both love the massage feature! Here are some pictures from this evening. (Yes, I'm as tired as I look!)

Jack's other bed was a captain's bed with lots of shelves and drawers ... we will be running around this weekend trying to find replacements for those items since he doesn't have anywhere to put his clothes, stuffed animals, books or medical equipment now.

Eric has been sick with some respiratory crap, so I have been giving him breathing treatments. Jack is getting the biggest kick out of the fact that it's Eric and not him who has to be "attended to". Jack was laughing out loud while Eric was getting his treatment.

Eric having fun with Jack.

Tomorrow is our first day with a nurse other than Kristi since Jack got home from his surgery last summer. Wish us luck.

Hope you had a wonderful day.