The last time I wrote on the blog Sam was still in Sacred Heart and we were watching Samuel recover from respiratory distress, tweaking the levels of a new medicine that was making an impact on his bradycardia, and awaiting a muscle biopsy to determine whether Sam's problems stem from some form of mitochondrial disorder or myopathy/ neuropathy. The question of a neuromuscular disorder has long been there for almost 5 of his 6 months and as much as we hate to imagine the scarey outcomes of such a disorder, it would be a difinitive answer.. and maybe it would help me to put away the anger I have had over how things went during and directly after Sam's delivery. I know God would have me look forward and not back but it is hard to move forward without knowing what is shaping our future. If it is some form of disease or disorder there might be treatments or ways to improve quality of life for him. Or.. there may not be. It could get worse. I understand that and in some ways I am moving into the "acceptance" phase of grief. I am just looking for answers and direction. I feel completely wishy washy. I feel unsure of everything. I go to God in prayer looking for the purpose of all this..how best to help our beautiful son. My children are very much a part of God's plan for me.. I just wish Sam came with a set of instructions.
Over that weekend following the blog, Sam improved on his Bradycardia events. He would have big dips from time to time but always seemed to recover.. "no pauses" as the cardiologist put it. Our cardiologist said Monday that we could probably avoid the pacemaker surgery if he continued to do ok on the medicine which has some tough side effects of drying out all his secretion but also works because of the lowering the tone of Sam's vagal nerve which seems hypersensitive and it raises the general heart rate. The vagal nerve when stimulated then effects the autonomic process of the heart by lowering the heart rate. The heart is too busy with beating to manage it's own timing.. so it appears our problem is with these outside forces controling the heart rate. The scarey part is the fact that Sam's heart has dipped to dangerously low rates and even has had short pauses..the last one lasting 4 seconds. This is called Asystole. Seems like such a short span of time but yet for his heart is way too long. 4 seconds could steal his life. I think about all that can change in 4 seconds. The period between when my dad's car left the road and slammed into a tree causing major injuries resulting in his death 15 years ago probably took less than 4 seconds. I walked across the stage accepting my degree from UF in a room of thousands of others in less than 4 seconds. How easily we take the seconds of our lives for granted.
The reason I had not written in awhile is that I was processing some frustrating turn of events that took place on tuesday of this week. We had seen the surgeon's nurse on Monday and she indicated it would just be a day or two before his muscle biopsy surgery, a relatively simple procedure that does require general anesthesia. We had some issues with Sam's congestion at night and he continued to require suctioning every few hours. He was otherwise fine and other than waiting on the biopsy we had been trained to do the suctioning with a machine at home. Then on Tuesday all the pediatricians seems frustrated that we still had yet to have a biopsy on the schedule. They inquired further and found out it was now scheduled but not for over a month. WHAT?? They were also suprised. After at first being told the surgeons were just booked solid..they finally found out from the surgeon directly that he just did not feel confident about operating on Sam with his history of Bradycardia and asystole. He no longer has a pediatric anesthesiologist (the surgeon is actually leaving as well ) and did not want a repeat situation as we had the week prior when he was put under for the MRI. We felt broadsided.
Why did the surgeon not come and tell us himself? Why did they wait so long to make this decision? Well getting mad was not going to help anything so we asked the pediatrician what was the next step and the attending said.."If this was my child I would get it done right away somewhere else." But when I asked where he felt we should go..he was wishy washy and basically said well you have gone to Shands in the past, you might go back there. Hmmm..left me with alot to think about. The physicians were incredibly capable at Shands although not coming up with all the answers but most importantly when they had the chance to do the biopsy 4 months ago, they did not do it. He was already going to be under anesthesia and they opted not to do it. The neurologist there was the only physician who seemed to dismiss Sam's symptoms and now I am supposed to place him in his hands..hmmm.
Then the cardiologist returned before we were discharged and seemed to change directions on the view about the pacemaker saying we may need it as a "life jacket". He said the meds might not work longterm. He was and is currently still awaiting further direction from the pediatric cardio electro physiologist at Shands Jax. He would have us go to him for the pacemaker and do biopsy there at same time if that is what is recommended.. I really like our cardiologist so I want to follow his plans but I feel like we need second opinions so we spent the next 3 days on the phone, internet and discussing possible courses of action. We really need someone who is our team captain, steering the ship and unfortunately I don't think our pediatrician is quite up to that role. She told me wednesday that she could not get info on us while we were in Sacred Heart and that she had seen the "pauses" on our moniters results before but not a cardiologist, did not know what to make of it. I love our pediatrician but they don't deal with complex cases. How do you find someone in a small town who can help manage the medical needs of a little boy like ours? I pray about it and I am doing my best to advocate for him myself but I find myself questioning myself too much. Why don't I just do what is in my gut..that is to drive Sam to any one of the best hospitals in the country and start entirely fresh? We have looked at Boston Childrens, Philidelphia Childrens, Texas Childrens and a number of hospitals that specialize in mitochondrial disorders (although we don't know that he even has one of those yet.). Is that the way to go? For now, I am planning to pose all these questions of the neurologist we are seeing tomorrow afternoon. I spoke on the phone to a friend of my aunt who is a cardiologist in Oakland, Calif. We will probably send here more detailed data on Sam as well for an opinion.
In the meantime, Sam has had a pretty decent couple days. He had 2 bradys his first night home but only one since then and he got out in the sunshine on two occasions for Bella's soccer practice and the first game. Yesterday he awoke from a nap with bad color and difficulty breathing that resolved after some suctioning and O2 by cannula. For that reason we are hanging home today.. keep things uneventful and allowing him time to rest. The best part of the week has been that he cut his first tooth and the second is on the way. He is such a sweet heart and has loved being close to his sisters again. I think the hospital is depressing for him. I just wish I had half a brain during the day to process everything and still stay upbeat for everyone. I end up just focusing entirely on him or the research and meanwhile the house falls apart in phases around me. I can't think straight some days to keep the "normal" stuff going.. Jason is far better at the juggling. There was some discussion in the hospital about the possiblity of a night nurse or aid at home but the doctor's said it can be tough getting it covered by insurance..I hate to have to add that fight to the list but with some help I think I would at least sleep enough to be clear minded by day. For now it just seems like I am making a long chain of disconnected movements in one long sleepless night. I am so thankful for the prayers and well wishes of friends. A bible study group at my church delivered a basket of goodies and warm prayers and I can't quite express how much it meant to us. We feel hugged and loved. We feel your prayers. We are thankful for so many blessings and if I seem tense or frustrated it is not because our community has not supported us or lifted us up. The visits of our friends and pastor in the hospital and the help of dear friends at home have made this hard time much easier and less lonely. I know God makes a window when doors seem locked shut and in many ways he has already delivered us. I just need to keep my focus on the seconds and be thankful for them.