As of late Tuesday we are now at Children's Hospital of Atlanta at Egelston in the cardio step down unit. Last week our son's cardiologist recommended the pacemaker surgery and had it scheduled for this week in Jacksonville at Shands. We had done research however and felt called to go to Atlanta where the Sibley Heart Center seems to offer some of the best minds in medicine as well as being farely close to us. We had also found out that a nationally renowned specialist of mitochondrial disorders is in the Atlanta area.
Our cardiologist put calls in to switch to Atlanta and before I was expecting it we had a call to get to the hosptal on Tuesday morning. We did not have transport planned and it was a bit of a nightmare morning flying through my house trying to pack and call for flights. I was not feeling confident about driving Sam by myself to Atlant and if Jason took me he would have had to drive all day and turn right back towards home because of course we have the girls, the business and all the normal bills to pay. By grace of God, my dear friend Robin swooped in and took over the search for help. She got an angel flight arranged whenI had only hit barriers in that area. She helped me pack and prep Sam and his equipment. She was an angel. We rushed out to Destin to meet a private jet and pilot "Bill" from Georgia who with his partner were our second encounter with angels that day. The flight was rocky and turbulant due to weather and for a moment I was not sure if we were going to get there but we did and Sam did wonderfully. He was so happy and carefree, sleeping most of the flight. Then our third set of angels came to give us earth angel assistance to the hospital. Wow - what a kindness! This is a service organization that really makes a difference. They took a stressful situation during what has been a long road of stressful situations and made things easier.
So we got there safe and sound. We have since met with many different Dr.s and specialists pertaining to the pacemaker question and biopsy questions as well as a general look at what is going on with our little man. The neuro team did not want to muddy the water with too much more testing but genetics still have a few things they want to check. The cardio people are monitering him and although he has had some slowing rates to 70s, nothing severe or symptomatic. They said it is sinus arythmia which I guess has to do with the SA node?? basically what it seems they think is that some undetermined influence on the autonomic system (be it vagal nerve stimulation of some form or sensitivity or dysfunstion at the cellular level), he seems to periodically get bradycardia as the autonomic nervous system controls heart rate. Somehow his heart sometimes just out of nowhere drifts south but usually he self corrects without intervention.. it is those pesky times of needing intervention that have everyone jumping around to decide what should be done.
If we do the pacemaker there are some risks to furthering stress on our Sam who may not respond well to that stress in a hole host of ways. If he has a mitchondrial disorder there are quite a few concerns to keep in mind. Mitochondrial disorder effect multisystems of the body which is why they are looking at Sam for this. Mainly because he not only has the bradycardia but also a slow swallow/ suck motor situation, lower muscle tone at times, hyptonia in neck and trunk, seemingly low tone through his intestines / peristalis causing constipation, lack of coordination of movements and some odd color changes at times to hands and feet, tracheomalacia, and used to be failure to thrive (that can be swiped from the list now thank the lord..). Yet amidst all this.. he looks REALLY normal to most who see him which is why it makes it even harder to find the answers because you have to look past this cute face (yes I am a little proud) and see the whole picture. The problem is that if he has a mito problem than there can be issues with putting him through anesthesia again..it might explain the probs we have had in the past post op worsening his symptoms. This is why another big procedure has to be weighed out carefully. Either way I think the necessity of the muscle biopsy has been repeatedly confirmed.
Well overall he is doing good and of course that is what happens when you enter the hospital in a non emergent way.. he is not having respiratory distress and seems the picture of health. Our 4th angel came into our path when My best friend of childhood Jenni came to our room and brought some things I needed and the comfort of her company. She is a til the end kind of friend even as we see eachother about once a year. She made Sam smile and got him playing a new game.. have to video it .. hilarious. He now does it with everyone. Basically she was making faces at him and he started blinking his eyes at her kind of like a sole version of peek a boo with out the use of his hands..he would scrunch his face a little and close his eyes then whip em open to smile at her. This got his geneticist laughing pretty good today.. what a HAM!
They had us see genetics today for a lengthy rerun through on all his life history..and although we don't have any obvious reasons to believe this is genetic, there are always recessive things that could be at play and only come into fruition in rare situations..Regardless of popular belief I found out, mitochondrial disorders (if this is one) are not more likely from the mothers mtDNA(in the egg) as once believed. Many types are autosomal recessive from both parents or are mutations of some kind. Sam then had OT, PT and ST and I met with a ped nutritionist (quite a commodity that we do not have in our local area.). He has lost some weight since his arrival and my guess is it is from the increased work of being poked and prodded etc. We worked with eating bananas today and that is moving in right direction albeit slow and difficult. He sleeps alot and I am trying to keep his routine as normal as possible. He will be monitered through the weekend with more testing. They may do a spinal and some blood work...I think they are waiting for him to misbehave...watching a pot to see if it will boil.
I think we will know monday what they suggest and they have said it may come down to us making the final call. Can we sleep at night knowing he might have big brady event that could steal our baby from us or put him through this surgery and place the pacemaker? I welcome opinions realizing of course that we will have to make our own decision. So I am praying God can help us with those decisions. For now we have a little time to mull it all over. Till then we miss our family and can't wait to be home to them soon..