Sunday, February 27, 2011

Let it be..

Sam loves to wave now. He is also very into inspecting himself in mirrors!

Friday was a busy and emotional afternoon.. Sam had a cardio appt in Pensacola that we had to leave for by 6:30 am after doing all his meds and getting all of us dressed, feeding pump primed, lunches made, paperwork gathered..a general nightmare of a way to start the day! It is about an hour drive to Pensacola but I sometimes forget rush hour traffic patterns can make it even longer. We also had to see the pediatrician as well in the afternoon.

Somewhere in between I found 5 seconds to meet with the ronald mcdonald house charities regional director about helping them with their caps for kids campaign. I will do a more detailed post in a few days but if you are interested in an easy way to support an organization helping so many families with children in the hospital, you can join us by letting your employees wear a cap or t- shirt supporting the caps 4 kids cause on the 27th of April (The cost is only like $12 per shirt or cap or $20 for both) and then they get to come to a special after work party to celebrate everyone's efforts. It is a sure win-win as employees will love the chance to wear something more casual to work while each shirt or cap will also allow a family to stay a night in the RMH house at no cost while their child is in the hospital.

This is a tremendously important cause that is very near and dear to my heart since the RMH was my home away from home for many nights and actually a month long stay as well. I have stayed in 5 different RMH houses over the last year at multiple hospitals. I can't put my appreciation into words properly. It was a place where my kids came on the weekends. We could actually sit around a dinner table to eat and pray together. It was a happier place than the walls of an ICU for those times when I just needed a break. It was a place for doing laundry and taking a much needed shower in peace. Most of all it was a place where there were others feeling the same vulnerable feelings that we were experiencing. Support the Ronald McDonald House because it is one of our best examples of a community effort that actually makes a tangible difference in people's lives. If you need more info on how to help, leave a comment, send me an email or call Jason's office at 850.609.2516.

SO in other news..I had my first bout of pink eye recently when Sam was sick a week or so ago and amidst Friday's chaos, I realized Sam seems to have it now too. UGH. We later found out it looks like whatever bug we were all fighting (most likely Sam's otittis ear infection) was the culprit. Bella was home for a couple days too this past week with 100.2 fever in late day and no symptoms, so I am guessing she was dealing with that same underlying bug.

At his cardio appt, Sam had another echo and EKG but all looked fine with heart function. He still has the PFO (hole in his heart) and shunting (blood passing from one side to the other) but this is not a "big deal" right now and not causing his problems. They still feel rather certain the sinus arrythmia he has is caused by autonomic dysfunction and hypervagal tone also known as dysautonomia. Dysautonomia is a major disability for some people and as my Dr explained, if it was our only problem, the pacemaker would be the way to go.. but Sam is tricky with his other Mito issues.

Invasive open heart surgery for pacemaker placement in a baby means it has to go against the heart which could be too much for his stressed system which I worry might lead to neuro, developmental or muscular regression not even to get into the risks of infection, GI shutdown etc. In Atlanta, when he was considered for the pacemaker, they pretty much put it in our court. He was being so good with hardly any misbehavior so they said we could try to stick with the meds and keeping him as healthy as possible since he seems to have major increase in events when sick or under duress. We opted to hold off but the day may come when we just have to do it. We are also weighing out the mediport that we were supposed to do last month but have been scared to do for the added infection concerns it can bring. I think we may be leaning towards getting it scheduled soon though as it would be our best bet for infusing him with electrolytes and fluids in heading off more illness. Decisions like these scare me..but if it wasn't this it would be something else, right. As Dr. Bailey put it so perfectly in one of my fav episodes of greys anatomy, "We're all scared!! If you're not scared.. you're not paying attention!!"

At the appt, the echo looked fine but we are now back on an arrythmia event recorder for a month. He had 2 drops just last night but neither was what I call symptomatic. Those are the worrisome ones where he actually grays a bit and seems not with it and then the more self corrected variety. So we have a new appendage. The poor kid is like a puppet on a string now. TOO MANY WIRES! They just want to take a look at our current status on his bradycardia events and also moniter for the strange Tachicardia we had last week when out of nowhere he sported a 256 for a few minutes. He did not look so good and his cardiologist said this is something we need to watch. If it stays that high over 5 minutes or is even less than that but is still elevated during an illness, he needs to be inpatient. This could be a sign of some new symptom or maybe it was a fluke..either way his heart should have stopped any messages telling it to jump that high. I am praying it was nothing. If not, there would be new issues of treatment since he is actually on a med for the bradycardia which keeps his heart rate up and lowers vagal tone. They are not adjusting that med right now since he is still the same weight as when he started it back in September. The treatment for high heart rate Tachicardia would be to actually encourage the vagal responce we have been downplaying so we get a lower heart rate. Sammy.. could you be any more complicated?

On the way out of Nemours, we ran into a little girl we first met in Gainesville at Shands Hospital..a complicated little girl with serious heart defects. Her dad is in prison and although the mom seemed to be very young, uneducated, and unprepared for motherhood.. she clearly loved her baby and wanted to turn things around. I prayed alot for her in the hospital and it was really nice to run into her in that lobby and see this little girl who has now been through 3 open heart surgeries and a long fight for her life, still fighting. She has a double cleft palette and is very tiny. In that hospital room 10 months ago, her mother confided that she was told her baby would not live to see her first birthday. It seems she actually reached it two weeks ago. I hope the road ahead is easier for that sweet little baby girl.

The other emotional part of Friday is that we may have found out some news that will make it maybe possible to get back the nursing care he needs... I don't want to jinx it but I am holding my breath.. hoping and praying this is a turning point. Hope to know more soon. In the meantime, we have a neuro appt tomorrow morning and will meet with the nursing company to do paperwork in the afternoon. Later in the week Sam will meet with an equipment vendor during his physical therapy about some special needs equipment to help get him more vertical.

My girls enjoyed a sleepover in our playroom was a special treat and I love that they fell asleep holding hands. They are best of friends, even when they squabble!

I am thankful for so much. I love my sweet family and our friends and all the gifts God graces us with daily. All any of us can do is be thankful and take it one day at a time.

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