I wrote the post below a few weeks ago but delayed in hitting publish due to the vulnerable nature of what happened to our little guy at home. It is a really long, emotional and rambling post.
October 3, 2013
Seconds seem like such inconsequential increments... until they feel like they are all you have.
Sitting in Sam's Pediatric ICU room I can hear the second hand ticking on the wall in an entirely too quiet ward that I know is inhabited by too many other parents passing the time just as I am. It is this all too familiar frozen, nervous state of worry.. the all-consuming fear for your child's life as you cling to the faith you have that God is in control no matter what happens.. a feeling I hope most parents never have to experience.
I know there are parents here desperately agonizing over mere seconds...
the seconds before that last smile..
before that last kiss..
before that wave of goodbye at the back door..
before the last lullaby.. or maybe even
before that last angry word.... all before life seemed to hang in the balance.
They are milling over their own responce time in seconds to a horrific set of events or maybe thanking God for every second they have left by someone's side during a long battle with illness. I know the worry of discerning what the meaning was of those few second pauses the Dr. took before giving a diagnosis or new treatment plan. There are people at the end of this hallway that are counting seconds till a surgeon comes out to share a good report. Sitting across from those people rejoicing in that news is maybe someone's husband or wife keenly aware that far too many seconds have past the projected time alloted for a simple procedure..and now they are worrying something has gone terribly wrong. All seems to hang in the balance over just a matter of seconds.
Our lives pass by, measured in seconds that add up to minutes and hours, days and months, ultimately the years that culminate in a lifetime... but it all starts and ends in mere seconds.
In sharing the events of the other night, the most difficult part is to recall how deeply we felt the seconds that mattered were escaping us. After facing quite honestly many, many life threatening codes and encounters for Sammy over the last 3 years, I have never in our home felt such assurance in a split second that he was gone forever. And by God's grace.. after over 300 seconds.. he was back to us. This happened twice in one night and yet God blessed us with his revival. I will try to share what happened two nights ago in our home that landed us here.. not only here in the hospital but here in this vulnerable state of concern and now waiting for his surgery.
I guess that night we were just winding down from a typical busy day and had sent the girls to bed, but they kept peeking back out for water or to pick a new book. Samuel seemed unscathed from a day of therapy, homebound school and a neurology follow-up an hour away. I fed the family dinner and we sent the girls and Max off to bed. It was a short while later that we gave Sam one of his many medications which always makes him extremely drowsy. He wandered around half awake as is usual for him. He was not on his oxygen but we give him breaks during the day and he is constantly on while sleeping. He always complains of his tummy before falling asleep and that night was no different. Jason held him and then he climbed into his little wooden antique desk chair. It is not uncommon at night for him to fall asleep on the living room floor or in his little feeding chair as his meds hit him fast and he often becomes a little irrational about being touched or even looked at. He likes to drift off on his own without being bothered.
We then usually move him back to his room to hook him up to his feeding pump, monitors, oxygen etc.. if he is not already on them. While talking to Jason about the day, I looked over in Sam's direction and noticed his head resting on the surface of his desk. Most mothers will tell you there is a recognizable feeling that comes over a mom when something is not right with their child. Like a 6th sense, I was suddenly struck with that unsettling feeling. I just don't know how long he was in this position before I realized that he seemed entirely too still. It makes me sick thinking about the time that passed.
Jason was closer to him and I heard myself ask, "Is he ok? Is he ok?" and then began to feel more and more anxious after he shrugged back and replied, "Sure, he's just sleeping." "Are you sure?" I asked. I don't know why I somehow remained frozen in time and did not move in those initial moments, those precious seconds and minutes. Jason realized my concern and reached over to touch him. He fell over like a bag of rice and it became clear that he was unconscious and not breathing. His color was horrible, greyed out and then blue in some areas. He was incredibly cold to the touch and his body had absolutely no tone. I could not find a pulse. We quickly began doing all that we know to do to save him and using all that we have for aid in our home.. which is more than most but of course nothing goes as smoothly as you hope. Nothing is right where you expect to find it and the situation becomes chaotic and highly stressful. At first we felt our efforts were futile... I watched my husband in horrible anguish that this could not be the last time we saw our son alive. After an incredibly long period, Sam miraculously regained oxygenation while bagging him with the ambu and we began to see some color returning and safer vital signs.
This was the longest period I have ever witnessed our son unresponsive and without signs of life while in our home. This statement sounds strange as I type the words because unfortunately we have shaved losing him too many times before...brushed up on what it looks like to lose a child and been blessed by God's grace. I wish I could erase all the ugly things we have seen in the last 3 years. This is a lonely and conflicting part of our life. I hate to admit it but there are moments I wish other people would have even the slightest idea.. because they would never ever take a breath from their child for granted again. That sounds horrible because most of the time, I feel this immense need to do the opposite.. to shield people from knowing too much. I often pray a prayer of thanks to God that Jason has been spared witnessing some of the more traumatic events just by the pure logistics of being at his office or home with the kids when we are away in the hospital. Here I am right now though feeling so thankful that we were together during this experience because I am not sure I would have made it through without losing it entirely and now it is something we can help eachother process. I am so blessed that God chose Jason to walk with me in this life. He is always so calm and collected, measured and wise. We somehow have managed through circumstances that would break most couples.
So... amidst all the chaos of that first event, we managed to reach 911 and stay on the line with dispatch until the first responders arrived. Sam had begun to breathe and regain color after about 5 minutes, but he appeared to be experiencing a seizure after this period. His eyes would not connect and his hand tremored with a twitch of his eyes. When I went to the door to let the responders in, I saw my daughters were curled up under the dining room table looking really scared. That is a haunting image for any mother. I took them aside knowing Jason was by Sam's side with EMS and I tried to get them back in bed and explain that Sammy was okay and that we just needed to cover him with prayer. They laid down to sleep not knowing we would be gone when they woke up.
Once he recovered from that first arrest, he was in deep sleep which seemed a postictal nature of possible seizures which I suspected where hypoxic in nature. We made calls to our neurologist and made the decision with EMS to hold off on an ambulance transfer. He was breathing and had regained a stable heart rate. We could have gone I guess but with his history, we hoped it was an isolated event and that the Dr. would take over about our next move. The local ER where the ambulance would take us does not instill much confidence in complex pediatric care management.. and the EMS team agreed. The neurologist nurse practitioner advised we go to the children's hospital that is 1 hour away if we had any other concerning changes in the night.
Soon after the first event and once EMS left, Sam's breathing became labored and noisier than usual. Jason was sitting with him and we awaited the arrival of the night nurse, all the while debating if he was stable enough to travel by car to the hospital. The night nurse arrived and just as we gave her a report of the situation, Samuel began to lock into a tonic convulsion and turned entirely blue. To us this event seemed more like it originated as a seizure. He was not breathing and again things were really bad. The nurse responded and was working to get his airway open with the ambu bag, while trying to get him to the floor so his head would be down for oxygen to the brain. He was unresponsive for several minutes and when his body did relax, he went grey and limp, he was not connecting or breathing on his own. The nurse's responce was far more aggressive on his small frame than I have ever seen but I was glad she was quick to take action. There is no way to tell another parent what it is to see other people trying to save your child. There is no way to describe seeing no life in responce to those measures.. and there are no words for the trembling, grateful feeling of seeing color fill their cheeks, eyes open at some point and looking back at you.
Sam was there in the floor when the same EMS team returned. After regaining consciousness, he was prepped for a transfer on the stretcher. I will forever be thankful for this one Paramedic who helped secure a ride directly over to the children's hospital, over an hour away without a stop at the closer ER, which is far less prepared for Sam. After all the stress, it was a stable trip with no other events.
Once there I braced as I realized they were looking to see if he showed signs of brain damage. Knowing these events might be just the beginning of more events or a symptom of some other illness, I expected a more proactive approach from the ER team. But.. as seems to be the case here locally, you find yourself telling them what you know might be associated with this situation from the past and what concerns you have for what might be yet to come as they blankly seem to wonder what your child's condition really is and whether they can google it. When Sam has had Bradycardic events in the past, they have typically proceeded illness or some stress factor so that is our focus after big events..stopping the worsening impact of the stress factor.
In the ER we delt with a long admission process, a few very kind residents, one less than understanding physician and one or two very caring nurses. We were left for long stretches alone in a dead silent ER ward. Sam was exhausted but breathing was far improved. I hoped that his detached mental mode was from the energy and stress of the events. Several teams attempted and could never get an IV placed and finally they decided to just get fluids in by way of his feeding pump because he was getting dehydrated at this point. The neurologist came by and ordered a continuous EEG with telemetry the next morning. Sam's mental state had been overall withdrawn but responsive. He was just very tired and we were hoping for no further events or signs of trouble. His breathing improved but his GI is still slow and much of his feed is leaking from the stoma.
One of the residents assigned to Sam was very attentive and kind. Going through all Sam's history, reliving it in a sense, can be very difficult with every new Dr assigned to him when these situations arise. I am thankful for all the caring hands in this hospital, but these days I can't help but feel they are often going through the motions. Maybe they have already decided his prognosis or maybe they are just not that familiar with the delicate balance that controls his health and how to best help him. I hate having to explain his history over and over and I grow tired of explaining that this stuff doesn't just happen out of the blue with him.. there is almost always a taxing stimuli. I live to control that part.. but why does it sometimes feel like they expect me to find the answers myself or just follow whatever course naturally occurs. Standing in the ER with our critical care RN night nurse explaining the events of the night to one of the physicians we encountered, I was left so upset when his first responce was to ask, "What course of treatment are you expecting us to follow at this point tonight?" I was left flabbergasted and deflated. I was glad for our RN who immediately looked at him and back to me and sent the clear message that we needed to know he was stable and safe... by GOLLY.. he had two extremely involved life threatening episodes that night! I only rant here because this is like turning the knife in an already extremely painful situation. Clearly we don't expect them to cure him.. is that what his Dr. was thinking we expected? After 20 some odd hospitalizations.. believe me.. even without a perfect understanding of his diagnosis, we know that management of his condition is the best we can expect for now.
Labs came back with elevated CPK, white blood cells and wonky neutraphils. I think all can be attributed to the stress of the events themselves but he has run some fevers as well while here.. so there could be an underlying infection somewhere I guess. I feel so alone in this place. I was so glad to see Jason able to break away and drive over today. He carries the weight of the world on those big shoulders. He is an incredible father who just wants to make it all okay for Sam, to fix this for his baby boy and remove the worry from his wife and children.
We know we will leave here without all the answers because.. as usual.. there are few answers to be had and we will just hope Sam's upcoming pacemaker placement makes the difference. I really should recap the last few months when we are back home.. since we have made some big changes in the direction of Sam's care.
Oct. 28, 2013
To recap since coming home and some big changes in last month or two..
Sam has excellent physicians over the last 3 years but unfortunately no real cohesive team approach. We struggle with having communication among the different specialties and so we approached a Mitochondrial Center through the University of Texas that provides a clinical multi-disciplinary approach. We went to Houston to meet with Dr. Koenig, of whom we have heard glowing reports from other patients. It is not that we are closing the door on the Atlanta Mitochondrial specialist who diagnosed Sam, but we are trying to see whether there are better ways to handle communication from a team approach. Already we have had more feedback from the new team and further communications to pass on to our pediatrician. I guess I will always need the wonderful folks at our tertiary care hospital 5 hours away and then maybe only a few times a year travel to the bigger centers for opinions of the mito-oriented team. Already we saw benefits when they checked in on us as this latest situation arose and are helping us as we prepare for the upcoming surgery.
As an aside, I realize we would be better off living in one of these big cities or places with close children's hospitals, but we would lose our family, friends, church, community, not to mention little details like jobs etc..
Overall, we have had a very busy few weeks across every part of our lives since Sam came home. By day 2 in the hospital Sam was doing better connecting and talking with me. He was not feeling well from a GI stand point and had some fever but we finished the EEG and were discharged home with the plan to get the pacemaker. The neurologist is pretty convinced again that these originate as bradycardia. He did not see much of the spike wave discharges on the EEG that he expected to see.. just a short period at the conclusion of the study. There was some slowing in portions of the brain seen in the past but nothing significant. He had no further cardiac issues while there and so we are left to wonder what the insult was that night that threw him over the edge. We have tried to keep things calm around here since then.. as calm as life can be for a family of 6.
Soon after the events, we made a trip back to Gainesville and stayed with our friends while Sam had his follow-up appts with ENT, Pulmonology, Immmunology and Dental. The first night was a little rough for Sam after the long drive. A slow GI after a long drive makes for discomfort and crying in the night for Sammy. I have a hard time knowing how to handle his pain during circumstances where we are away, in a hotel or someone's home. I know my tension over his crying in another person's home probably don't help and obviously some of the problems are likely linked to being out of his environment. This happens every time and the odd part is that it is often not during the drive lately but actually hours later in the evening.
One difficult part of this trip was meeting with the immunologist for the first time. It was good to have someone assessing his immuno status and considering how safe it will be someday for him to start getting into more open environments, like a classroom. It is difficult to realize what interventions may be necessary to make that a viable option for him. His little buddy Nate is getting what they call Sub Q infusions of donor immunoglobulins weekly. Some kids get similar support through IVIG in the hospital once a month. Even though I know it has helped Nate so much, I fear needing to take additional measures, but I know we will get all the facts and make decisions based on the opinions of those who know what is best. The immunologist pulled like 12 viles of blood on Sam for testing and then revaccinated him for HIB, Pneumocacol and Flu. The pulmonologist did mention that his liver was a little enlarged (something that has come up on and off before) and I am hoping that is just because of the stress of those recent events and not something we should be concerned about.
We drove home and Sam began having some low grade fevers, congestion and general malaise. He stayed this way for over a week. The pediatrician could find no real culprit and I honestly think the vaccines just threw him off his A game.. or maybe his body is still healing from the trauma of the events a few weeks prior. We are just letting him coast for now. He had to meet up with his surgeon a week later in Tallahassee and he was still not feeling very well. His surgeon increased his stimulator settings and we made it home in time for dinner.
During the course of these few weeks, the Houston electrophysiologist thought we might need to consider having the pacemaker surgery moved up but in the end, we have kept our original dates and I feel good about this, despite my nerves of some crazy event happening in these last couple weeks. I need him to be well rested and for our family to be ready to support him through this hurdle.
Amidst all the stress of the last month or two I was really blessed to have a few days with my highschool girlfriends at a beach condo reunion right here in the area. I can't even put into words what this meant for me. It really helped get my mind off life's difficult stuff and I laughed harder than I have in years. I am blessed by some very loving friends and I am so glad we have stayed in touch.
Sam will have a pacemaker implanted in a few weeks in Houston. At the same time, the electrophysiologist has advised that he do a bubble study to assess the nature of a small PFO or ASD (small hole between two chambers of the heart) that has a history of shunting blood, basically mixing oxygenated and unoxygenated blood. If it is still doing this shunting, he will close it surgically. This small hole is not uncommon in even healthy babies but could be contributing to fatigue and desaturation problems. When you have cardio pulmonary issues like Sam's, a small thing can be more complex, I guess. The pacemaker surgery was scheduled a few weeks before these latest life threatening events but now I could not be more convinced of its necessity. I hate the idea of another implanted intervention device but anything that keeps our little man growing and enjoying life is important.
I know the support measures we have had to take have contributed so greatly to his well being but I will never be comfortable with the idea that we can't just wipe away his history, ship away the equipment, formulas, meds and tubes..that we can't just remove the interventions and that he might just be.. normal. I know to appreciate that he is special and be thankful for the life-altering gifts that come with his journey.. but some days are so hard and I feel the sadness of the situation pulling me down. I have never been a "depressed" sort of person. I just think you can only hold in so much before the cracks start showing. I am slowly becoming more okay with being honest when someone asks how things are going.. smiling and just saying it is all great is not always very honest. Something has to give lately on alot of levels that I keep silent about.. and I don't have all the right answers except to keep moving forward. Pray for us that we don't let the financial nightmares of this life sway our faith in knowing that we will be okay and that God is with us.
Although I am leaving so much out of the last few months, our life is moving at warp speed around here and passing us by so fast and I guess I just take to heart that life can really change in a split second, which is why I hope you all treasure each one of those precious seconds with the ones you love.