Hope

Today's food for thought:

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HOPE

Often others seem to feel a special responsibility to puncture our hopes. They say things like “You know he will never learn to read” or “You need to accept he doesn’t know what is going on around him” or “He’s doing well now, but he will reach a plateau.”

They would say we are in denial, that our dreams are “false hopes,” from which we must be protected. God forbid anyone should go around entertaining false hopes! But, in a certain sense, what other kind of hope is there?

Hope is the thing that is willing to take a chance on the future. And who is audacious enough to say what the future will bring? Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job.

There is a worse thing than false hope. It is no hope.

Changed by a Child

Today's appointments

Today's appointment with the orthopedic doctor went well. Our local ortho (Dr. White) told me that Jack's St. Louis ortho was in Phoenix last week with the group of orthopedic docs from St. Louis Children's who were here to put on some continuing education presentation. Dr. White attended the presentation and talked to Jack's St. Louis ortho - he told him not to worry - that Jack was in good hands here in Phoenix. Dr. White said the St. Louis ortho just laughed (not sure what to make of that???) My dilemma, however, is that the St. Louis ortho says we can't flex Jack's back -- which we would do if we put him in the sling. Dr. White says we are 6 months out and it's okay to resume "normal" activity and it's okay to use the sling. On one hand, I have the ultra-conservative St. Louis surgeon and, on the other hand, I have the "not-a-care-in-the-world" Phoenix surgeon. It is so frustrating that I can't ever get two doctors on the same page. I guess it's my job to find the appropriate middle ground. The other thing is that I asked Dr. White what Jack's curve is post-surgery -- he measured it and got 40 degrees. The St. Louis ortho told me 52 degrees. How can there be such a difference in their measurements?! Who is right? Does it really matter?

The meeting with the school district was fine, for the most part. Jack has a good team, although I think some of the therapists are a bit defensive. PT is still on hold (Karen - I'll be in touch). I find it a bit ridiculous that they can't understand why Jack is having a difficult time doing all the things he was doing pre-surgery. Here are the facts, figure it out .... Jack was flat on his back in bed for 4 solid months. Presently, he is only out of bed 1-2 hours a day. I don't know about you, but I'm thinking the 1 or 2 hours he is sitting in his chair, it is taking a LOT of energy just to adjust to sitting. You can't expect him to jump right back into his normal activity when his head is probably spinning the majority of the time he is up in his chair. They revised his goals and basically set goals appropriate for a 2 year old and, quite frankly, I don't really give a s#%t! Jack is smarter than anyone will ever give him credit for. I know that, and that is all that really matters.

Today is over and, as they say ... tomorrow is another day! Onward we march.

Thanks for checking in.

Busy (and Stressful) Week Ahead

We have lots going on this coming week. Tomorrow Jack has an appointment with the local ortho for an x-ray. I don't expect we'll see anything of concern, but it will be the first x-ray since we've had him up in his chair ... so, I'm a little nervous. Per the instructions of the St. Louis ortho - we still can't do anything with Jack that will flex his back (while I don't like the guy, I do heed his advice, as long as it makes sense to me). This means we can't put him in the sling for his lift system yet because that will clearly flex his back. The bummer about this is that Jack is a two person lift and unless there is someone at the house to help Kristi put him in his wheelchair (like a therapist), he is still spending the majority of his day in bed. The recovery period for a spinal fusion is one year - so it won't be until this summer until we can start using the lift system.

Speaking of his bed .... I decided it's time to get rid of the hospital bed. I like the fact that we can elevate Jack's head and move the bed around the room to give him different views, but I hate the fact that I can't lay in bed with him. Plus, it makes me nervous when we turn him on his side to change diapers, clothes, etc. that there is so little room between him and the edge of the bed. I have the fear of him falling off the bed. This week Jack will become the owner of a queen size sleep number bed from Select Comfort (they deliver it on Wed). It's got all the bells and whistles - we bought the adjustable frame so that we can still elevate his head and his feet too. It's got a built-in massager (I'll be checking that out!) and, of course, the ability to change the firmness of the mattress. I also feel like this is the best thing for managing the areas on his back that are susceptible to pressure sores. The added bonus is that it's a queen with dual controls, so Jack gets one side and I get the other! Just so you don't get weirded out with the thought of me sleeping with my kid ... I usually only sleep with him when he is sick ... much easier to suction 100x a night when you are right there as opposed to traveling up and down stairs as many times. It’s also nice to hang out with him in bed and watch T.V.

The stressful part of the week is that Jack will be getting a new nurse one day a week, starting this week. Kristi has always worked 4 days a week for us and we had a different nurse one day a week. Our one day a week nurse has been a revolving door the last 4+ years and we've had, at best, one or two nurses that I've been comfortable with. Due to Jack's fragile state following his surgery, we chose not to have any nurses in our home except Kristi. Since the agency won’t pay a nurse to work more than 50 hours a week, Kristi has been working 4 1/2 days during the week and Mark has worked from home one afternoon a week (Mark’s employer – Edward Jones has been very supportive of Jack’s situation - kuddos to them for being such a family friendly company). However, Kristi is getting burned out (understandably) and she needs to cut back her hours here. Jack is a helluva lot of work and he is still (in my opinion) very fragile. The nurse we have starting this week is someone who has been here before and someone who I am fairly comfortable with. I just hope she appreciates what Jack had done this summer and understands that she must be extremely careful when she moves him. I'm so incredibly protective of Jack since his surgery. That kid went through hell and he deserves to be treated like a king as far as I'm concerned. I only want nurses in my house who genuinely care about Jack, not nurses who are just here to collect a paycheck. Jack is too precious to settle for anything less. It is with great apprehension that we open our home to a new nurse. She orients with Kristi on Tuesday and she starts Friday. I am sick to my stomach nervous leaving Jack with someone other than Kristi. Wish us luck!

I also have an IEP meeting with the school district tomorrow (after the appointment with the ortho) . . . oh joy! These meetings are such a complete waste of time. Part of me wants to sever all ties with the school district and just take the position that Jack is home-schooled. I’m sure they wouldn’t mind … it would save them a lot of money. But, occasionally we get a good therapist and I don’t want to deprive Jack of the experience just because it’s easier on me. I’m not even at home when the therapists are here, but I have to sit through these meetings and listen to people who don’t have a clue as to who Jack is or what his potential is tell me what they think he can and can’t do or what he does or doesn’t need. Having already been through the “process” with Hilary, I’ve learned to take everything they say with a grain of salt. As I recently told a friend of mine, I’ve come to realize that if you randomly took people out of the general population and subjected them to the testing our kids have to undergo – a whole hell of a lot of the population would qualify for services. I don't really care what label the “professionals” attach to Jack . . . as far as I'm concerned . . . he is PERFECT!

Have a great week everyone.

Sadness

As many of you know, I am active on a message board for parents of children with trachs. One of our moms just posted that her daughter unexpectedly passed away today. Her daughter was a twin. This is the third child on our trach board who has passed away within the last 6 months. I never met this mom or her daughter, yet I sit here tonight feeling such profound sadness. It's a reminder of how fragile our children really are. Life is fragile all the way around . . . but for our kids who rely on medical technology/intervention to keep them alive, the line between life and death is so very fine. We work so hard to create the appearance of normalcy; we make things look easy and under control. The fact is, there is nothing normal, easy or within our control when it comes to caring for a medically fragile child. I realize there is nothing easy about being the parent of any child. This isn’t about “my life sucks more than yours”. It’s just about being sad over the loss of a child that hits way too close to home. Hug your children, appreciate life and remember that none of us is guaranteed tomorrow.

Brothers

Today was another GORGEOUS day! We took the boys out and did some shopping, went out to lunch and finished off with a walk around the neighborhood. Jack tolerated being in his chair wonderfully. It's so nice to be able to get out and about more with Jack.

Although I hate to spoil everyone's image of the "brothers" ... in the picture where Eric is talking to Jack ... Eric is actually yelling at Jack because he has "slobber" all over his face. Jack just laughs at him. (If you are wondering what they are looking at ... there are baby ducks in the water.)

Quiet Weekend

I'll take this ....
(Chandler, AZ - today)

over this . . .
(St. Louis, MO - Tuesday)

any day . . . which is why I live in Arizona ;-)

There is absolutely nothing to report. All is well, the weather is fantastic ... life is good and I am enjoying the moment ... and it doesn't hurt that this is a 3-day weekend. Enjoy!

Home ... just barely!

The wind-up

The throw

Eric, Peggy & Lucy (the dog)

Airline tickets to STL - $500
Visit with the eye doctor - 20 minutes
Flight delay due to snow - 5 hours
Money spent in STL airport waiting for flight - $too much
Eric's first time playing in the snow - PRICELESS

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We were only the second or third Southwest flight to get out of STL and that was at 5pm. Most flights heading East were cancelled all together. We were lucky to get out. I would have been okay staying another day if I had known before I got to the airport that my flight was cancelled! Eric did very well hanging out in the airport most of the day. Note to self: do not schedule doctor's appointments in STL in the month of February!

Hey "ME" .... you can come stay with me anytime!

Warm and Sunny .... Please

On the plane on the way out .... looking a little nervous
Starbucks before we left for the airport.

So far ... no snow, but it's been rainy, cold and miserable. I almost forgot how awful Winter could be. Edit: it's now snowing and our flight is delayed. I just hope we get out of here today!

Eric's eye appointment went extremely well. Eric went from seeing the first row on the eye chart (you know ... the BIG letter on top) with his "bad" eye to seeing the second to last row. He also went from having no depth perception to regaining it completely -- all this just by wearing glasses for 5 months. The doctor told me that everything they want to see happen -- happened. Gee, that's a first for one of my kids!

It's been great spending time with Peg. We've stayed up late - talking lots and polishing off a few bottles of wine in the process. We are heading to the airport soon - I'm anxious to see Jack's sweet little face. I'm so glad you all have enjoyed "Jack's faces" - it means so much that you can "see" what I see in his eyes and face.

Have a great day and those of you who live where you actually get Winter .... stay warm.

Faces of Jack

At night, before I turn off the lights, I ask Jack to show me his sleepy eyes. The fact that he can do this is of great significance to me. Before Jack's anoxic event, he made the best faces ... we would ask him to show us his happy face, sad face, sleepy face, mad face, etc. and he was great. It took over a year after his anoxic event for him to be able to show me his sleepy eyes again. He is still unable to show us his other "faces" on request. However, the fact that I can ask him to show me his sleepy eyes and he can do it, is an affirmation that he is still "here" following his event. You can see him processing the information and the delay before he can get his body to do what his mind tells it to do. I ask him to show me a second time just to make sure (in my mind) that it was a conscious act and not just happenstance. You can also hear how excited I get over such a simple gesture. I just wonder what Jack could tell us if we could translate what's in those eyes to words.



Here is Jack this morning when I mentioned putting his DAFOs on. Obviously, he did not like the idea! There's a bit of acting going on as he tries to keep himself from smiling while giving me the pout. (btw, he will get his DAFOs on sometime today - much to his dismay.)



(DAFO = Dynamic Ankle-Foot Orthosis - braces for Jack's feet/ankles)

Got a call from the ophthalmologist's office Friday afternoon telling me that the doctor unexpectedly had to go out of town and he wouldn't be there on Monday. I told them I still plan on coming, so could they get us with someone else, which they did. Mark and I both think Eric will probably need surgery because his eye still wanders, so it's a bit disappointing that our doctor can't see Eric. Oh well ... trying not to sweat the small stuff. If nothing else, it's a much needed break away from the stresses of work and Jack.

Have a great weekend.

80 and Sunny --> 30 and Snow

"Winter" is officially over here in the Valley of the Sun. Today was a gorgeous 80 degrees and sunny. Eric and I leave this weekend for St. Louis for a follow-up appointment with the ophthalmologist on Monday. The forecast is for SNOW on Monday and Tuesday. Yikes! It probably seems crazy to go all the way to STL for a follow-up eye appointment but, I am 100% comfortable with the ophthalmologist in STL and I'm less than 100% comfortable with the ophthalmologist here. Plus, it's a chance to get a couple nights sleep without having to listen to the blasted baby monitor and, best of all ... a chance to visit with my dear friend, Peggy.

Jack's definitely got some intestinal virus going on. Let's just say diaper changes send everyone running while exclaiming "I'm outta here" (Eric) or "Oh my God" (Mary). We now have candles burning in Jack's room to freshen up the place. He's also full of snot and his heart rate has been above 100 for a week (unusual for him). Naturally, he gets sick before I'm scheduled to leave town. I just don't want another phone call from Mark like I got last June when Jack was sick and I was in STL for the trach conference. I answer my cell phone to be asked this question: "When do you know if it's time to take Jack to the emergency room?" My answer ... "not unless he is a full code!" (and I'm completely serious ... I don't do ERs with Jack.) Hopefully, Jack will just behave himself the 2 1/2 days I'm gone.

Doctors

At the ripe old age of eleven, I had my life planned out. I wrote these plans on a piece of paper that I still have in my possession today: “When I grow up, I want to be a doctor. I hope to also get married, have ten kids and live a happy and long life”. For as long as I can remember, I wanted to be a doctor. I couldn’t wait until I was old enough to put on the red and white striped dress of a junior volunteer. My job was primarily filling patients’ water pitchers and running specimens to the lab. Not very exciting stuff, but I was thrilled simply to get an up close and personal glimpse into the life of a doctor. I eventually traded the striped dress in for a blue jacket worn by the senior volunteers. I asked to be assigned to the emergency room - where I spent most of my weekends throughout my college years. It was an eye-opening and amazing experience. I completed my undergraduate degree in Biology, took the MCATs and applied to medical school. It is here where I encountered my first detour on the road of life that I had so perfectly planned. I was not accepted into medical school.

Over the last eight years, I’ve had the opportunity to spend a great deal of time in the presence of doctors. Unfortunately, I find myself on the wrong side of the white coat, and that is a very difficult place for me to be. After Jack was born, I was thrown into the world of intensivists, pulmonologists, neurologists, surgeons, fellows and residents. Jack spent close to five months in the PICU and during that time I encountered a legion of doctors, as the attendings and residents rotated through. I saw doctors do a lot of great things. I saw kids get new hearts and lungs and kids who were much sicker than Jack get off machines and leave that PICU. Yet, these same doctors couldn’t help me. They couldn’t “fix” my kid no matter how hard I pressed them and pleaded with them. I fought traching Jack for months because I needed answers. I needed to know “why?” The answers never came. I was worn down and eventually had to concede. From my perspective, the profession that I had so admired and aspired to belong to, had completely failed me. Jack left the PICU with a tube in his neck, a tube in his stomach and connected to a machine to support his breathing. He also left with a very terrified, confused and angry mom. I was so disappointed with doctors that I wanted nothing more to do with them … an impossibility when you have a medically fragile child.

I’ve encountered the good, the bad and the indifferent when it comes to doctors. But, by and large, I’ve had the privilege of dealing with an exceptional team of doctors who have provided the best of care to Jack. I’ve also had the opportunity to get to know several of Jack’s doctors on a more informal level. These doctors have been an incredible source of support to me by taking the time to talk me through things, by allowing me to see things from their perspective and by simply listening to me vent. One of my biggest fears the day Jack and I left the PICU was that of being abandoned by the people who – from my perspective – put me in this position in the first place. I’ve been very fortunate. I’ve not been abandoned, I’ve been embraced by several very special doctors who have done, and who continue to do, everything they can to ensure that Jack and I have the best quality of life under the circumstances.

Over the years, I’ve managed to temper my anger and disappointment towards doctors. I now have realistic expectations as to what doctors can do for Jack and what their limitations are. I’ve given up the dream of finding a doctor who can “fix” Jack. However, I still struggle with the fact that I’m on this side of the white coat and every time I sit in a room with one of Jack’s doctors, I am reminded of what I failed to accomplish. Perhaps my disappointment is not so much with the medical profession as it is with myself.

I close with the following quote from a book of companion notes for parents of children with disabilities. I believe this sums it up perfectly:

Doctors are human beings who have some information or knowledge that will help our children. Some are very skilled, and many are average. They have strengths and weaknesses. They make mistakes in their work. If we don’t put them on pedestals, we won’t have to knock them off.

Changed by a Child