Tuesday, December 31, 2013

Finding Pace and Peace in the New Year

The countdown to 2014 is already in progress and I feel some excitement about celebrating tonight with my sweet husband and kiddos. It will likely be just pizza and monopoly for us.. long gone are our days of champagne and a dance floor, but all the same..there is much ahead and much behind to celebrate.

I have failed to blog in the last two months. We spent Thanksgiving in Houston as Samuel faced his pacemaker placement, bubble study and the possible ASD closure. I was glad that Jason, the girls and Max were all able to be with us for this trip. We all had a day together in Houston after Sam's preop appts and I felt this overwhelming joy.. when I watch them playing together, I can't help but know they may not always have this. They may not always have each other. It is an impossibly hard part of our reality but somehow when they are all together and bonding, I forget that ugly thought. We went to the natural science museum before we settled in at the RMH to help Sam rest up for the big day ahead. Sam had a rough night (as always on trips) but what was the hardest part was how cold the weather was that week. Getting to the hospital at the crack of dawn the next morning is no easy feat with babies, equipment in frozen, rainy weather. This Florida girl was shocked by the 20 degree front that came through Texas. I know, my snowbird relatives are laughing at me.. but we really don't even know how to dress for that kind of cold down here!

So Sammy was supposed to go in as outpatient but we pretty much knew that he would become inpatient just based on how he likes to handle stress and anesthesia every time. Luckily, the team at this hospital really knows how to handle Mito kids and their anesthesia protocols are fine-tuned with good management. Sam was so precious that morning as I sent him off to the Cath Lab. He kissed me hard and asked me, "Mommy, can you go in there with me?" and all I could say to him was that God would be in there with him. This just never gets any easier.

So Jason took the kids home as they were unruly and all over the waiting room. I sat there waiting for word and was so thankful when one by one each of the physicians and nurses involved called or stepped out with status. An hour or two into the procedures we found out news I was not expecting. We were having a bubble study done since they wanted to make sure the small hole (PFO/ ASD) we knew he had between two chambers of his heart was not going to be a problem for passing clots etc. So they ran bubbles up through one femoral line while a intra-cardiac echo that was in through the other femoral line could monitor the physiology and function of his heart. Then a cerebral Doppler was placed on his head that monitored the circulatory flow through to his brain. The bubbles that they inserted went across the ASD and apparently it indicated a severe shunt in the right to left direction which is in reverse of the usual flow. This meant, that the closure was indeed indicated. The Doppler on his brain actually also showed the bubbles went directly there as well which for me raised all kinds of questions and concerns. We are very lucky this little man has never stroked out. I sure hope the times when one side of his face was doing seizure-like chewing motions in the past.. hope that what we were seeing was not part of this issue. I am just not sure and don't really have the medical knowledge to connect all the dots that emotionally you worry about when you get this kind of news.

At least we knew the ASD closure was necessary, as we hated to have one more thing implanted in his little body. They put in a Helix Device to close the hole which is like opening a small umbrella on each side of the hole. Then they proceeded to go in through his shoulder to place the pacemaker lead to the right ventricle and the generator under the muscle. The cardiologist was wonderful as well as the anesthesiologist. They came out and said he was having a bit more trouble being extubated right-away as his airway is incredibly scarred and narrow. He had a seizure during the 6 hours as well. When he came out, the biggest issue was keeping him still as he was in a lot of pain and wanted to move his legs which needed to remain still for the next 6-8 hours. This was incredibly difficult to manage as he is only 3, after all and wants to move when he wants to move. Usually after his surgeries, he is far worse with his breathing and I was very happy with anesthesia's choices this time.. far less respiratory decline. I felt he was better overall, but the nurses in the IMC were more concerned.

He spent the next few days in Intermediate Care Unit working back up to his feedings. His follow up echos and EKGs looked good and we were able to go home the weekend following Thanksgiving. We had a semi-Thanksgiving dinner as a family in the RMH and met some really amazing families. It is incredible experience to be giving thanks over a donated meal, prepared by such loving hands in that setting where you know that every family is more thankful for each day with their child than most people will ever appreciate. One of the families we met while there in October who had a child awaiting a lung transplant was sitting a table away with their daughter in their lap. 18 months old and she was on ECMO life support when we last saw them. Today, she is just an 18 month old toddler fussing over what she wants to eat off her plate. She got her new lungs 6 weeks before and has a brighter future ahead. Sam played in the playroom with an older child who had also just had a lung transplant. She approached him because she told him she knew what it was like to need oxygen like he wears.. but how happy she was to not need it anymore. What a blessing.. purely thankful for the ability to breathe without help.

Just to keep our life adventurous, on the way out of Houston, the door to our van fell off the car... like the straw that broke the camels back. After so much stress that week, I felt it was almost just too much and I was going to fall apart. But I know it is better to laugh than lose it in those horrid moments and I pray things will one day be easier. Things have been pretty tough for us financially due to all Sam's needs and the demands of the trips, stress etc.. and then when normal stress comes along like our dryer that doesn't work or grandparents who are moving into nursing homes for dementia, you sometimes find that there is just already a pile to throw it on and it feels like too big a load.

Since his surgery, we returned home for a month of recovery and tried desperately to keep Sam from using his left arm and shoulder. This was nearly impossible and he experienced alot of pain each time he would forget to reserve his movements. His incision has healed well and I am especially thankful for this as we had been home a few days and turned to find he had ripped off his own steri strip dressing which was slightly angry and bleeding. His cath incision points are still very visible but we had no issues there either. He had a strange cough when we first got home but it finally disappeared. The biggest issue was his palor. He has had striking pale periods since the surgery, at times just generally so and others more marked and scary looking. His Dr. ran a CBC which showed somewhat low hematocrit, hemoglobin, red blood cell counts and MPV counts with high leukocyte counts but I guess for him and having just had the surgery, there was no concern for now. I think maybe his body could even just be adjusting to the circulation changes of closing the shunt. I can't imagine it was good that for all that time he has been mixing oxygenated and unoxygenated blood and shunting it the reverse direction... so I am glad the ASD is closed.

The last few months have been so much to process emotionally... We have long needed additional income to help with all the medical costs and I decided to return to working again full time. Probably one of the biggest hits we took when Sam arrived was my inability to be in an office doing an 8-6 job.. pretty difficult when you are always in the ICU and managing not only our kids but all of Sam's medical stuff, so I began doing communications work for our law office, which was helpful but I really needed a position with traditional benefits and pay. So.. I just made a shift this month and am working for a great organization from the house. Although this post is a temporary one, I hope to find a permanent one in the near future. It just has to be flexible enough that I am not fired when Sam lands in the hospital. Haha.. I am praying a lot about this change... more than anything praying it adds wider horizons to my outlook on life that admittedly has felt some big dips.. I really try so hard to have optimism for our future and Sam's.. it helps to find a place to pour out more of myself. I have to be honest in 2014 about tough realities that are hitting us pretty hard. I am thankful that we have a business we fight for and that we have income, but I am praying for our costs to become within reach of that, for more work, for more clients, for a fighting chance to save our son and give him what he needs. I am asking for the right answers to finding a manageable pace in this difficult life... to being able to be a balanced person that refuses to let the emotions or stress of life take over.

2014 is just a few hours from now and I think my resolution will be to find the best pace for peace in my daily life. If those little pacer generators that sit in my son's body are helping him to find a fine, safe balance, a rhythm for living a better and longer life, well maybe I can emulate this technology in my own life with some positive change.
Happy 2014 to all of you and yours! May you find peace and joy in the year ahead.

Tuesday, November 12, 2013


A Spy Kid, a Sofia-the-First Princess, a Super Grover and an Elmo all spilled out of our home this year on Halloween night. We visited with family and then set out to trick and treat with some friends. I was thankful there weren't many scary characters trolling the streets this year.

I am glad that my kids really don't associate Halloween with ghosts and goblins. They just know it as a perfect chance to wear a mask and be someone else for fun.. with no dark hauntings.

Since that night, I had a painful awakening that perhaps I am the one who is haunted. I had an unexpected encounter that forced me to realize that maybe some ghosts I thought were buried are still able to climb out of their graves.

I was walking along at this local function, watching my older children as they enjoyed the fall festivities when I realized the Obgyn who delivered Samuel was standing just 4 feet away from me. She had moved away quite some time ago and I guess she has returned. It is odd how quickly I could tell it was her since it has been almost 4 years and although she is a 43 year old woman, she was wearing platform shoes and had her hair in pig tail braids... but I knew it was her. All of a sudden I was transported back to a horrificly painful time in my life and it all came rushing over me. I felt physically ill.

Quite some time ago and after many many months of inner anguish, I thought I had laid to rest my anger for this person... her offenses, her lies and the insensitive way she treated me. I laid it all to rest because I realized it was all eating me alive and causing more pain than we were already facing. I forgave her because I knew God asked that of me. I just wish He would show me how to live with her in my vicinity now. I am not prepared for this hurdle.

Over those first couple years when we were in such horrible pain over the outlook they gave us for Sam's life, I worked hard to avoid thoughts of her and all the moments and decisions before his birth. It was harder to tuck away all the questions we were left to ask. I am not sure if those will ever be answered. I just know now we have chosen to live in the moment and not let the dark stuff pull us down. It doesn't help him or our family. I know that if I let it, it would tear apart my life with all that anquish. I have to let it go.. and I thought I had but maybe I am actually still haunted by it when presented in close proximity.

I couldn't make eye contact that day but if I could have approached her.. what would I say? I guess I need to keep working on locking this ghost in her closet.. but one thing is for sure. It will be awfully more difficult now. I am praying for strength against my fears of seeing this person regularly (and apparently it will be frequent since her kids go to the same school). I am asking God to help me again to not let my memories bring resentment back. She is just a person who crossed my life path.

Jason and I were sick this weekend and so I am hoping for more wellness for the week ahead. My sister's daughter celebrated a birthday and I lift her up for a most special year of growth ahead. Sending up prayers about Jason's grandfather who is in late dementia stages and has been in the hospital and now transitioned to a nursing home. I have a friend's son getting through cancer treatments and someone very special to me who just found out they have a fight with it ahead. We are preparing mentally for Sam's surgery coming up in a few weeks. I am praying for his good health in weeks ahead and that all planning logistics go smoothly.

We found out insurance won't pay for a $15,000 Whole Exom Sequencing testing that is at the forefront of available diagnostics for kids like Sam and I will post about that another day.

Wednesday, November 6, 2013

In a split second

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.

That night..

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.

Monday, August 12, 2013


Disney's newest hit, "Planes" is out in theaters now and our little pilot is so excited! Seeing this movie is #1 on his wish list, but for now seeing the retired ones over at our local USAF armament mueseum has been a favorite field trip while he waits. A talented friend graciously snapped these pictures of Samuel so we would have something to submit with his story for the Children's Miracle Network he will be supporting this year.

Walking amidst this avenue of planes, I considered that navigating through life is a little like the guiding of supersonic jets through the clouds. Unlike the well-devised USAF missions however, we follow a flight plan that only reaches us on a moment by moment basis. The aerial view is really both breathtaking and frightening all at once and the pressures from G forces can nearly pull you apart... but who would trade the thrill of the experience for anything in this world?

As we soar through the skyway steering clear of bad weather, we heed the advise of experienced forecasters. We use our tactical weapons sparingly and we keep open lines of communication with the ground towers. We trust the air traffic controller (Our Personal Lord and Saviour) above all to impart divine direction and the coordinates we will need for the journey ahead. We have survived surprise attacks and our parachute has saved us when ejected from a diving free fall.

A daily challenge is handling a payload of cargo too heavy for the amount of fuel our tank can manage, so that means relying on air to air refueling with fellow aircraft. (You Know Who You Are..) Crew fatique, engineering mishaps and equipment failure can easily derail a mission and require a trip to home base but once patched up we taxi back to the runway as fast as we can, ready to get back in line for a chance to fly high until the day our soul permanently joins the heavens and our battered ship retires to the metal graveyard.

We have a lot of curious static on our current flight plan and I guess I need to blog it out eventually but for now am waiting for more information from the recent testing Sam has had done. We have an appointment in a week and hopefully the clouds will part on some unclear symptomology we are picking up on the radar. For now we will 'keep the wings level and true' as they say in the Air Force. Over and Out.

Thursday, July 18, 2013

The Space Between

The space between the tears we cry
Is the laughter keeps us coming back for more..
- Dave Matthews Band

This lyric can be so true to life..

I will try to fill in the gaps of the space between now and when I last posted to the blog about 7 months ago. I have had issues with the website and loading pictures and text, which made me less inclined to blog due to the hassle.

Through Christmas and New Years, Samuel continued to recover from his Medtronic Gastric Neurostimulator placement surgery. He rested alot at home and slowly began regaining some weight he had lost. We enjoyed our annual trek to this road of spectacular house lights in the north part of the county. I am glad we are a family that enjoys our traditions.

We gained a new family member in our black New Zealand Rabbit, named Luna. She has been a great addition to our home, especially for the responsibilty gained by the girls in caring for her. Sam learned how to climb aboard and ride a little motor car..zoom zoom. We are working on him riding a tricycle in therapy. He really wants to own the road!

As Sam's surgical incisions healed and he felt more active, I gingerly began bringing in more opportunities to get out and about. After trialing the stimulator on the outside of his body so long, it is now tucked away inside his body and no worries of leads getting yanked etc. It has been such a miracle for him. He is in so much less pain and tolerating food into the G tube instead of only by slow feed through GJ. His development has surged since it's placement as well.

As Sam rebounded over the holidays, we made a trip to the local US Air Force Armament museum to see the planes. At that point he was only using one to two words at a time and depended more on his signs to communicate. This did not curtail his ability to relay all of his exuberance and emotions to us. The expressions of pure excitement at seeing these metal birds of the sky were priceless. He was trotting around the property and showing such increased stamina that day that I could only attribute the gastric stimulator and addition of oxygen therapy to the improvements.

The girls also enjoyed this outing. Learning about military history and talking about the contributions of the many service members in our family is one way I try to pass on the presence of my father. This is the kind of educational family field trip he would have encouraged for his grandchildren had he the chance to know them.

From January through February, Samuel faced several illnesses that tried to knock him down but we were able to keep him tolerating his pedialyte, teetering through crashes without hospitalizations. We did experience several bigger brady events and a few seizures, so meds were adjusted and we did more halter monitering. We had one strange situation where his heart rate plummeted on one particular day while exercising, when usually his symptomatic bradycardic events happen when at rest.

Sam had his gastric settings increased while down in Gainesville for followup appointments. His distention and comfort seemed to be responding to those changes. We still were not getting alot in by mouth but far less GI pain, residual on venting and more universal activity and growth. His weight had gone down slightly after the surgery but climbed steadily in the New Year and has now reached a little over 30lbs. with a length of 33 inches. This places him on the charts in the 20th percentile for weight (YAY!!) but still not on the chart for length (no biggie for me as I never planned on having a Basketball player for one of my kiddos). On a developmental level, we shot up in speech abilities between January and March..from two word pairings to 5 word sentances and asking questions, explaining his day and telling us how funny something is.

At the start of the year, we began all the IEP preperations for Samuel's transition from Early Steps into the public school system. This is an important phase as it relates to ensuring his therapy needs continue to be met and that we avoid regression, keep moving towards his individual goals. The school therapy has a very different focus than that of private sessions. The school therapy is meant to support educational goals, which means we have to find a balance in giving him all the support he needs in all areas with a finite amount of energy and time awake daily. This was a learning period for me on all that encompasses the IEP process.

This transition was an altogether eye-opening experience in more ways that I ever anticipated. In the end, I am really pleased with how things are situated at present. I was always told that if you fail to ask questions or advocate for your child, noone else would step up and make sure their interests and needs were met. Some of this may be true in certain settings, but we found that in Sam's case, his evaluators and the entire team really wanted to help him be successful. I had such fears that they would not understand what our priorities were and what his condition really meant in relation to his needs. Sam is unique in this process I think because he appears very typical on first glance and this can leave your guard down. So much of his health, growth and performance ride on on the balance of energy and wellness. Stress avoidance and caution with endurance limits can crucially impact his ability to reach his own bright potential. With faith, motivation and cautious perseverance.. we will press on for great things for Samuel.

This year, Spring Break and Easter came in with a lamb. Our girls enjoyed egg hunting and time off school. Samuel wanted to gather eggs at each opportunity but the stimulation and exertion of the process really overwhelmed him. He would point and start to bend over and then look unprepared for the mission and retreat. He enjoyed watching his siblings and the children of our church, but it became keenly obvious how much physical exertion it was taking amidst all the activity. Bending up and down for empty plastic eggs was just not worthy of his effort. I really couldn't blame him but I so wanted to see him love this time honored tradition!

One evening, while I was at the office setting up for a seminar Jason was giving, I got a call from the nurse saying Sam had taken a fall and his teeth were jammed up in his gums. He needed to see the dentists regarding trauma to the upper teeth and because he is "complex," this morphed into a bigger issue than usual. Since the nearest pediatric dentist willing to see him was all the way down in Gainesville and they could not just jump in surgically due to his anesthesia concerns, we had to make several trips and everyone is still not sure whether his permanent teeth will be damaged. Nothing is ever easy for this sweet boy! I hated for his smile to be effected since already some people stare at him openly in public for all the equipment that goes with him. He is maturing and has asked me what they are looking at. He completely gets it now and that worries me. Sam is so very bright and social. His siblings are his whole world but he wants more buddies if I could find more safe opportunities. The sad part for me is that he lights up and relates when he sees characters on TV in a hospital setting or a senior citizen wearing oxygen in a restaurant. I gotta get this kiddo to some typical playdates! :)

On that note, we have prayed about an opportunity that came along for Samuel to speak and represent a very worthy cause as an ambassador. Our family will take part as a miracle family for the Children's Miracle Network Dance Marathon supporting UF Children's Hospital at Shands in the coming year. I will have to share more on this great opportunity later.

Spring to Summer

We experienced some symptomatic bradys in June. Most events have centered around illness. At our cardiology appointment, the pacemaker was again on the table and possibly implanting something called a Medtronic Reveal which could record his brady details over a longer period of time. After three years of knowing he experiences these life threatening events, I am not sure what more we will learn but it is something we will investigate. As the bradycardic activity has actually included asystole pauses long enough to make his physicians realize sudden cardiac death was a real possibility, noone wanted to jump at dropping off the medication that has been helping. Even though we now seem to have far less episodes, the fact that we have any at all mean our cardiologist suspects pacemaker is still indicated as the solution. So you might wonder.. why not just do it right away? Well, because it is open chest surgery on a child his size and not a cath/ sub Q procedure and really every surgery puts Sam at risk for serious setbacks. The device has to be placed against the heart wall. UGH. Batteries have to be switched out periodically like his abdominal device and it just is one more big intervention than we would like if medication can manage the situation. Just have to pray about this and get more information. We are getting one more opinion from the Electrophysiologist/Cardiologist at UT in Houston who has experience with mito and dysautonomia which may help us.

Break for Summer

The girls finished out the school year and both had many end of school year activities. They jumped into summer and our pool with both feet and have enjoyed every moment thus far. VBS and golf camp activities have kept them busy while Sam began his summer school schedule of therapies and homebound education. I struggle with things falling through the cracks..like all moms.. be it laundry, quality time with the girls, making dinner or just having quiet time to myself. I am feeling deflated and overwhelmed by life right now. I know it is the slam busy schedule and stresses from 3 years of being in survival mode. Something's gotta give some days.

On a positive note, my mother had her long awaited cochlear implant surgery recently and when we had it turned on... it was a pure miracle. After no hearing for many years, she can hear now. There are just few words for this. Her quality of life will be so improved, in fact, it will be great for us all because communication has been so difficult.

The last two to three weeks have been pretty tough for me as we have watched Sam have some worsening respiratory issues at night and also the appearance of seizures not being controlled by his medication. It began when he had a stare off episode during OT and was making chewing movements on one side of his face. His Dr. adjusted his meds a couple times and we are still having issues.. so I am hoping things will get better or answers will emerge after the sleep study we have coming up in a week.

This was an incredibly long post to recap the last six months and yet left out so many details. Life around here is just so full and jam packed lately.