Dog Dayz

Matthew 11:28 (NIV) Come to me, all you who are weary and burdened, and I will give you rest. After several bouts of concerning illness periods with his typical declines in gut function amidst intense pain, Samuel has had a rough couple months. We had to replace his GJ when it yanked out one day and have delt with adjustments to several medications in responce to an increase in Bradycardic events with convulsions. He did better once the medication was adjusted but then to have the illnesses made for several weeks of worry for the rest of us. Somedays to say I am weary is an understatement.. I am just flat out tired at times, but am trying to find outlets for the emotional periods and stay positive overall. Samuel's pain and comfort are my priority. Right now downturns are intermittant and luckily he has rebounded each time. On so many levels Sam is doing really well. He is learning to go up stairs now with help and is trying to pick up speed with his walking... but not quite running yet. He is playing with toys that were never of interest before and is using good strength at lifting objects during wellness periods. It is sometimes hard to imagine that anything is even wrong. He is playing with his sisters and trying to talk more. We have to pull more of his speech out with cues and questions, but I know he will get there with expounding it himself. He is so social and happy around others. We are dealing with some typical two year old behaviors.. so that is even encouraging. Then there are these dips.. For instance, we do PT for an hour when he first wakes and about 30 minutes in he starts wanting to lay his head down or can't seem to keep up as fast. Then he falls asleep and sleeps for 6 hours straight. Then the day is gone and we do a bath and try some dinner and he is down again. If an illness comes along, he quickly shifts into an even weaker mode. This week he was overwhelmed just sitting on a sunny patio. We had gone to Atlanta for medical appointments with his GI specialist, dietician and the Mitochondrial Specialist. The drive went ok but that night he had 3 apneas and was not looking great. He was crying out with GI discomfort and we have to pause his feedings for most of the night. We usually go to Pedialyte and inch back to formula but even then he was just not himself. His Drs talked through some protocols for dealing with the gut shutdown periods and other illness issues, like the pain. The latest illness began with an infected epiglottis and he was in tremendous pain, which seemed mmore from the gut than from the throat area. The protocol is usually to stop his food and go to pedialyte and then try to inch back to formula but the question of the hour is always how long is too long without the nutrients he needs to get well. We tried everything for the pain, including tylenol with codone prescribed by his pediatrician. The GI Dr wanted to try an antispasmodic (bentyl? maybe) but that has drying side effects and he is already on robinul which drys him out so badly. The Mito Dr says we should try methadone and that although it sounds really heavy, it is actually a good pain choice. My concern is that anything we give him is going to increase problems with his motility. They believe the pain is neuropathic in nature and less about actual cramping but more so about the neurotransmitter problems associated with the low ATP his electron transport chain is able to produce. I just don't know what is best, but I imagine that writhing in pain and slamming his head into the floor and breathing so hard with retractions etc.. is not helping our energy problems. In Atlanta Sam had more Resting Metabolic Rate testing which as usual was in less than a restful state. He has failed these in the past so I am not sure the reasoning for continuing to do them. He becomes so hot and exhausted in the bubble contraption. The first one he ever had at 9 months old was while sleeping but these last two were not quite so easy. We then had this exhausted little guy to get back to a hotel room to rest before his other scheduled appts over the next two days. He ended up with a draining Pink Eye and gunk in his nose that evening. It is always something.. we can't seem to get through one trip without a hitch on some kind. I was just glad we got back home the in the wee hours of the morning. I was literally slapping myself to stay awake on those dark back alabama roads. Luckily, Sam's nurse had gone along with me and agreed to take the wheel the last leg of our trip. God does seem to send angels just when you need them. I am not sure I could have made this trip alone with Max and all of Sam's equipment and trying to navigate all over Atlanta. I am getting better at this with each trip but it is so much easier with an extra pair of hands and eyes. As for new insight from the appointments, most things will be staying the same with his treatment plan. The dietician did not want to mess with his current formula regimen as he is finally up on the growth curve for weight (far off for height) and she does not want to have him unproportional. It would make respiratory issues even tougher if he was fighting alot of middle weight. So.. he is a compact little guy for now. His brother is 4 months old and quickly coming up to his size. Max is 18 to 19 lbs (depending on the scale) and is 28 inches. Sam is 25 to 26 lbs and 31 inches. It was funny when the GI Dr got a look at Max in the same exam room. He said, "That one sure does not have his brother's challenges." They did end up giving me a new Peptemin Jr formula to sample as it is 30 cal/ oz and we could buy 4 more hours off the pump as he currently has to stay connected to it 16 hours/day. Maybe this will be a helpful solution for more time off the pump but it will mean he needs more water flushes beyond the pedialyte we already flush with every hour. The mito Dr. also wants us to consider more genetic testing as they still don't have a genetic answer for his condition. They have new testing techniques that can test for scores of other genes at one time. We are already giving them so much blood and urine regularly for metabolic testing, I see no reason that they can't test it for genetic stuff. I honestly don't expect those answers to be found however as I expect his issues were related to mutations caused through stress inutero or disruptions in the oxidative process at birth .. but I am always open to finding out the answers. The cost is the other issue. We are already battling insurance on so many levels and their office is already hung up over insurance on the testing he had done with his muscle biopsy, that was supposedly already pre-authorized. Thousands of dollars more in testing is really only doable if insurance will cover it. They say it could be helpful with prognosis and looking at possible phenotypes. As for the girls, the end of the school year was here before we knew it and now we are jumping into the dog days of summer amidst incredible heat and humidity. Sofie missed her VPK graduation after a stomach bug hit the preschool but luckily she seemed to rebound pretty quickly. Lately, the girls are spending much of their time swimming and playing together. I hope to also encourage plenty of time spent on more educational activities this summer with lots of reading. I am sure the summer will fly by in the blink of an eye. In moving forward for Sam, I am scheduling followups with pulmonology and ENT on recommendations from his other Drs. We already have his routine echo/ cardiology appt scheduled for later this week so I am hoping to squeeze the other two in on the same trip to Pensacola. It is so hard not having resources closer to us. His Atlanat Drs keep asking when and if we plan to relocate because it would be so much easier for a complex kid like him. But we love our hometown and really need the support system we have here. In other news, I am facilitating a faith based parenting discussion group this week at our church that I hope will bring together other parents looking for some adult conversation in the midst of their hectic week. Jason and I have had little time to spend with other couples in similar phases of life and I think it would be a positive experience. So along with prayers that Sammy plug along with his wellness, I hope to enrich our summer with positive activities for us all. By the way.. blogger is not working well and won't let you seperate your paragraphs.. any ideas on how to fix this?

EASTER 2012

Morning has broken like the first morning
Blackbird has spoken like the first bird
Praise for the singing, praise for the morning
Praise for them springing fresh from the world

Sweet the rains new fall, sunlit from Heaven
Like the first dewfall on the first grass
Praise for the sweetness of the wet garden
Sprung in completeness where His feet pass

Mine is the sunlight, mine is the morning
Born of the one light, Eden saw play
Praise with elation, praise every morning
God's recreation of the new day

Morning has broken like the first morning
Blackbird has spoken like the first bird
Praise for the singing, praise for the morning
Praise for them springing fresh from the world.

This song has long been sentimental for me as it was one of my father's favorites. He sang it often throughout my childhood, but particularly on Easter mornings. Over time we sang it together. His voice still resounds in the corners of my memory whenever I sing it to my kids. It reminds me that he is still here with me and wants the Easter message to fill my heart.. to remember that it was a new day for us all when He rose from the dead.. and to value and seek out what his resurrection really meant for us. In this way, every Easter morning is like the first morning.. breathing new life into me and my faith.

Thank You, Lord for crisp, cool mornings like this one. Thank you for my precious family and for the gifts you offer each new day as well as the challenges you help us overcome to become stronger. Thank you for your forgiveness and for each new beginning. Thank you for allowing your son to walk with us and show us the way.

Praise for the singing, praise for the morning
Praise for them springing fresh from the world

Spring

As we pass the halfway mark for Spring Break 2012, I thought I should share some pics of the kids enjoying some fun under the sun! Who needs to leave for the week when you live in such a beautiful place like the Emerald Coast? Here are highlights of time spent with friends by the pool and the Gulf of Mexico.

Overall, the week has been great. I am not getting anything productive done around our house, but I know one day I will not remember how quickly the laundry was cleaned and put away, but I will recall how big the smiles were on these kids faces as they sank their feet in the snow white sand? It's a no- brainer. Quality time with them is just more important.. pristine home or not.

The sad thing is we live here every day of the year and hardly ever make the ten minute drive to the beach. I hope this summer will be different, but I know Sammy will most likely dictate that for us. If time in the outdoor heat is going to set him back, I guess we will try to find ways to take the kids seperately. This week, Sam was able to hit the beach for an hour or so and then hung by the pool for about two hours the next day. He was tanked after each excursion, but seemed to really love getting out and seeing other kids.

Sam had a sleep study and 12 hour EEG at the end of the past week and right before his birthday, but even though it was not the best experience for him or his dad, he did not let it put a damper on his mood. To sum up the negative of that experience I need only a few words.. more wires.. a gazillion electrodes.. and no crib! It sure did enlighten us on how dramatically different our son is from when he was 9 months old for his last one and could not even lift his neck and did not put up any kind of fight during the placement of all those electrodes. Things sure have changed! The funniest aspect of the test was when he said they were done hooking Sam to everything and Jason had 5 seconds to try to eat his sub for dinner only to have Sam crawling all over the bed in a tizzy. Then over the intercom he hears the tech say, "Ahem, Excuse me sir.. but he is about to fall over the side rails." I can just see it and imagine myself trying to hold him down all night... hate to say I am glad Jason went this time! In the end, Jason strapped him into a carseat so he could get some rest.. hardly conditions for an accurate study of a typical night's sleep. Now we just need to await the results in 2 weeks at our followup neuro appt. Of course he did not "perform" any of his heart rate, seizure or hypoxic tricks for the study so who knows if we will learn anything at all.

Next week we have immunizations for Sam and Maddox, which has me a bit on edge. Sam had issues after each round since birth and as it has been a year since the last set, I am less than excited about trying to see what his delicate system can handle. His Mito Dr says the immunizations are still very important, even though we have had setbacks with each round. He says that the progressions of disease studied surrounding mito kids and vaccinations have shown it is not really the vaccine that is troublesome, but that it is the fever and stress that accompany them. They still feel he needs them though as he would be in serious trouble if he came into contact with one of those illnesses that we are hoping to avoid by vaccinating. I just pray he goes in Monday in his best state of health and that no issues arise in the hours and days that follow. I couldn't handle another hospitalization or regression right now. On another note, I am trying to get a plan together about getting Sam to his specialty follow up appts in Atlanta, for which he is long overdue. Doing this with a newborn is not very easy.. so I hope it all can come together smoothly.

I continue to pray this week for my friend and her family as her husband undergoes radiation treatment for cancer in his throat. Meanwhile her son is sick and running fever. Her husband is experiencing the swelling and discomfort in his mouth and throat that makes it impossible to eat. I know all too well how horrible it is to watch someone you love go through all this after my mom's battle with Lymphoma. I hope God guides them in ways to get through the remaining weeks ahead. I know they have amazingly strong faith and will cling to that when it just seems too hard.

I have a praise for another family in my heart. My music pastor is a new grandfather this month and all I can think of is how amidst so much pain and hardship of life, God sure brings beautiful blessings too. After losing his wife to cancer, I have been reminded of when our family lost my Dad and how hard it was to imagine there was anything ahead for us or my mom to look forward to.. and then it seemed even harder when her cancer hit, but God had a plan and brought her grandbabies. This changed her life and continues to be something that offsets all the challenges she faces. I know his wife is also celebrating this joyous news from Heaven. Thank you, God for grandbabies! They are yet another way like Easter and all the signs of the Spring season, that life will go on and we can all experience rebirth and life anew with much to praise ahead.

Happy Spring!
Amanda

Ugly Bug Ball

With Isabella turning seven today and Samuel's second birthday just around the corner for tomorrow, we decided they should share a family celebration. We chose an "Ugly Bug Ball" theme as the kids had these fun bumble bee spring outfits and since we were doing this as a spring picnic.. it just worked! Plus who doesn't love the classic Ugly Bug Ball music from Disney's Summer Magic.

We cooked burgers on the grill and enjoyed watching all the cousins play outdoors and perform Wii Karaoke for us. It was a great day. I was especially happy since Samuel's first birthday was not during a very strong period of wellness last year and I am so thankful he was able to dance and sing this time while surrounded by all the people who love him.

Bella really enjoyed belting out some tunes and showing us her best dance moves. I can't believe how grown up she has become in the last year! It really became obvious as I listened to her reading her birthday cards with ease and thanking everyone without the reminders. WOW.. they grow so fast!

Sammy also decided to use the party as an opportunity to flex some fine motor skills as I watched him all of a sudden pick up his fork and start feeding his own cake to himself. I guess I was not shoveling it in at his desired pace! Such a funny little man! He is learning new things every day but it is I who has learned the most from him. He was so sweet all day.. full of hugs. I just wish I could keep him this way for the rest of his years. I sure love all these cute bugs!

Hills and Valleys

Today I read about the loss of a sweet boy who I have followed online. He showed more courage on any one day than most adults do in a lifetime. I can only imagine the pain this family is feeling to say goodbye. His pain is over and I hope the family can find peace in that he touched so many lives with his warm smile. This family is in my prayers.

I began this post earlier today, amidst chaos of meeting the needs of my 4 kiddos on a busy saturday morning. I was feeling the weight of my worries today for Sammy which often comes and goes on a daily basis. I was originally writing about the hills and valleys of our life lately and how I wish I could stop focusing on the potential threats ahead. I then came back to my post after absorbing the news of this mother's loss. How can I live in fear of future hills ahead for Sam to climb when I see that so many other children's life journeys are cut short so early? God has given us a finite time on this earth but an eternity in Heaven. I really have no business worrying over the hills and valleys ahead for this earthly life. It is more important that we focus on the life thereafter and the steps we are taking now that will lead us all to that happy journey. Every day is precious with the ones we love and it is best to focus on what is in our current path.

This week we began the 30 day halter monitering with hopes of recording Sammy's symptomatic events again for the cardiologist so maybe we can further confirm his understanding of the dysautonomic crash of sorts that leads to his bradycardic and, in turn, hypoxic events. His Dr is concerned less about slowing heart rates but about his heart stopping for these periods, as he has had in the past. At the same time, we have increased his dose of the medicine he takes to counteract this problem and we hope it is the best solution. If not, we need to consider the pacemaker again. I just don't know if he could make it through the open chest surgery with his prior track record and I fear the regressions that always come with procedures.

Sam has been playful and happy this week, although more floppy in his walking. He has been moving much faster in exploring his world. He has taken more advances with his sipping of fluids as well. He still sounds somewhat wet with it, but far less choking behavior and less aversion. I am trying to weigh out more outside exposure to public settings as we did take him with us to the final cheerleading functions for the girls last month and he did well. Our worries primarily surround that bad combination of the risk of illness and the taxing of his system with exhaustion and stress.

In therapy, my main current focus is on his speech development. I have asked his therapist if we should try to increase speech sessions from once a week to at least twice as he is not moving far forward in this area. I fear the prospect of him remaining largely nonverbal if there is something we can do to push it forward. He is so quiet much of the time and then has days where he seems to be really trying to find his voice with the sweet sounds of babbling. The other day, I responded to his call for "mommy, mommy" which is a quite rare use of this word and I was ready to hear what else he had to ask of me..holding him and trying to understand.. he was unable to tell me and began a tantrum, banging his head against the crib in frustration. He signs for many things and we are working on expanding this but it is just not enough right now. He loves the ipad tools but our therapist does not want to try too many different communication avenues away from verbalization as he clearly knows what he wants to say.. just not how to do it. I am sure it will come in time. Meanwhile, he only gets OT on consult and greatly needs more as he still can't stack blocks or color or feed himself with a spoon. His PT has been wonderful for movement but recently has had personal issues and keeps canceling his weekly sessions. So I have to get involved now with that on a more aggressive, advocating level.

In 6 months, Sam will start the IEP process, preparing to exit the early intervention program and enter the school system with VPK-D (developmental PreK). This is something I know little about and need some help navigating.. so that will be my next hill to educating myself about how to best advocate for his needs.

Sam will be 2 years old in one week and I can hardly believe it.. this is such a joyful milestone for us all! Bella will be 7 the day before and I want to celebrate both of these special events but right now a big party does not seem possible. I want Sam to know how loved he is and how proud we are of all he has done this year. I think it is almost too emotional for me to even share how special this 2nd year was as we watched him make such strides in so many areas.

We also have the sleep study/ continuous EEG this next week so, it should be a pretty busy week for us. At least cheerleading has wrapped up for the girls so our schedule will be calmer than it was over the last few months. Spring Break is right around the corner and I look forward to some fun outings as a family.

Probably my greatest prayer for this coming week surrounds the approval of the nursing to continue. That would be the best birthday gift God could give to Sammy. The approval required renewal review is this week and
I can't think of a single more important thing that contributed to Sam's health and wellbeing this year. I just don't know what it would mean for him or frankly, our family, if he loses this coverage. I don't know where I could even begin to fight for this again.. where I would draw the strength. It feels like when that happened last year it was God reaching down and holding Sam in his hands. He knew we were at a breaking point and Sammy was fading fast. And then our prayers were answered.

I am also praying about a special project for Sammy and I that has been on my heart for some time. I am wanting to start up a music therapy foundation, bringing the joy and love of music to touch and help local children with challenges. I think it would be something I could do to give back what has been given to me. I am just working out a plan on how I want to develop it. I pray for guidance on how to begin bringing this dream to reality.

My final prayers are surrounding a friend of mine's family during a difficult time. My friend's husband is undergoing radiation this month and it will be a difficult time as they all go to be with him through this trial. He seems to be doing well after a surgery to remove cancerous tissue in his throat. They have so much faith and I am sure he will persevere through this time swiftly. I hope God helps them to cope and brings to close this scare with a disease that is hitting far too many families. I wish I could understand why cancer and other deadly diseases touch so many people nowadays.. indiscriminate threats that you can't see coming. Thankfully, this family is well supported by our church and community, with an army of prayer-warriers pulling for them.

Fight Or Flight

After a long day spent in Pensacola for Sammy's appointments, trying to figure out the origin of the sudden onset of the episodes he had over the past week, in hopes of creating a plan to avoid further life threatening concerns, it appears the specialists still find that our issues rest with his inability to effectively manage in "Fight or Flight" mode. His autonomic nervous system runs amok..yet again.

It seems our neurologist and cardiologist still think the episodes originate from a form of dysautonomia. This does not mean our pediatrician missed the mark by stating the event he witnessed might have started as a breath holding episode. He may have part of the trigger figured out but noone seems 100% certain on the entire chain of events. They think there is a misfiring in his brain that sets off a storm leading to bradycardia (very slow to no heart rate),a rapid drop in blood pressure, hypoxia and seizure. The trigger of this misfire is some mixture of external or internal stress, improper impulse control, involuntary breath holding, and hyper vaso/vagal tone. The behavior that seems like a seizure where his body is incredibly rigid and there is an obvious facial grimace and lack of consciousness, is likely a reflex anoxic seizure brought on by the lack of oxygen reaching the brain..not necessarily from not breathing but from a switch in how gas is exchanged and processed in his cells and is further inhibited from the heart not pumping it up to the brain at a fast enough rate. At least this is my understanding. The cardiologist said laying him down or him passing out and falling down should improve the ability to get blood into the brain faster as it stops fighting gravity. Stimulation with sternal rubs is key and getting to oxygen too.. but although hypoxia is a very important concern for avoiding brain damage, his concern is that the heart could stop beating and not resume. Sam has had concerning pauses in the past and we are now going to be watching to see if this remains a valid concern.

Our neurologist is ordering a continuous EEG to be done in their lab within the next week or so in order to see if we are able to capture an event. They don't think these are initiated by seizures but capturing one on EEG would bring confirmation. The Cardiologist has doubled his Glycopyrrolate (robinol) medication which has an anticholinergic effect by blocking the neurotransmitters which slow his heart rate. (Forgive me if my layman's understanding of these things is simplistic). But basically this medication lowers the vagal tone making it harder for messages to go out that slow the heart rate at dangerously low levels (a condition called Bradycardia). I like his cardiologist because he takes the time to explain things in a way that I can more easily grasp.

Until Sam's arrival I never even understood the nature of our heart rate and the delicate balance of our internal and biological rhythems. Everything has to be in sync or a traffic jam can occur. I liked how he described the heart as having one main job to do.. just to keep pumping and how the brain and nervous system are really the parts who act as the back-up pacemaker to ensure that the muscle pumps at a rate within the upper and lower limits. SO if the heart gets to pumping too fast or slow and that internal "fight or flight" is kicked into gear, the pacemaker or autonomic system needs to put things within the safe range. Sammy's does not always do this effectively and so if he decides to get mad and not take that next breath or take too many breaths, his internal autonomic switch needs to lay out the safe "fight or flight" limits but it seems to fail him and his heart rate plummets further dropping his oxygen saturation levels and bringing on a host of scary symptoms.

If on the new levels of medication, Sam has another episode than we will begin a 30 day holter monitering where an EKG is recorded during his events and based on those results, we might have to reconsider the pacemaker. This has been helpful to his Dr in the past. The pacemaker was advised a year ago for Samuel when he was having so many of these events but we saw the Robinol working and we opted to avoid the risks of major open heart surgery as it is with the placement of the pacemaker in an infant. The vessels of an infant are far too small for catheterization that is used on adults. This means the pacer has to be placed directly against the heart and will scar to the heart over time. The procedure is risky and I can't even imagine how we would feel doing this after seeing him nearly die following lesser procedures. This might also mean he would need more surgery later to change out batteries etc.. But that is getting too far ahead to consider right now.. for now, I will try to focus on the medicine changes and pray for no bad side effects. Those in of themselves are enough worry for this week. I wish I could handle things with more calm and grace, but honestly I don't think I could be anymore nervous after the stress of last week. I just don't want to see him having episodes so often as he did a year ago. It was a crushing time for me. On top of this, we are having normal family stresses of a new baby and such and I just have to keep remembering what is most important.

That said, I think my own "fight or flight" abilities are incredibly weakened lately. It would be so nice to say I have found the profound peace, the smooth ride (if you will), that I have so often sought with my planning and daily prayer... but I am just not there yet. When road blocks appear in my path or unsafe driving conditions loom ahead, I either take off in the opposite direction or worse I see red and can't even read the road signs pointing out the best route. I speed when I should slow down for dangerous curves and I find myself staring in my rear view mirror at things behind me that can't be changed. I lack the skills to survive when stranded on the side of the road and I can't seem to "fix" a single engine problem, let alone, change the tire when it blows. Basically, I lack the road savy skills needed to make this cross country journey alone.. so I find myself taking a lesson from Sam.. I will have to let God take the wheel on this one.

Searching for answers again..

SO it seems we are heading back down this road again... more endless questioning and confusion on Sammy.. I know God has taught us much in the school of life but I thought we had gone on summer break.. I guess school is back in session.

Here is what happened.. the quickest version I can type since I need some sleep and Max is needing to eat every hour on the hour.

We noticed this week that Sammy was a bit "off" but I could not put my finger on how or what was brewing. He was more fussy than usual. His coloring has been blotchy and he seems to be sleeping in odd patterns. He had some junky sounding periods after sleeping which would resolve after being upright. He has an open ulcerated area at the stoma of his G tube which is hurting him and causing him to yank at the tube.. so I thought maybe this was further pushing his mood a bit. Anyway, last weekend there was a moniter alarm for a brady that was asymptomatic. Then on Wednesday morning I was on one side of the house getting the girls ready for school and the nurse was on the other side changing a diaper when Sam apparently had a major hypoxic episode.. brady, seizure.. whatever you want to call it.. I am so confused at this point.. I just don't know. She described him exactly as I have seen in the past.. rigid, locked up and contorted. His skin purple and blue... not breathing and then going completely limp and then greying out and unconcious... the spelling on that looks wrong but I am exhausted and it is midnight.. so forget looking it up. I wish this thing had spell check sometimes. Anyways... he was out for maybe under 2 minutes and she put him on oxygen and then he started breathing again.

I guess she screamed for me but I could not hear her. This whole thing coupled with his recent funny behavior prompted us to call his Dr. but apparently he was out for the day and noone called us back. Then he fell asleep and we hoped he would get some calming rest. It was a few hours later when he awoke that we again noticed the junky breathing and arching pain. He did not want to be held and was irritated by everything done for him. We vented his tube and there were little black things in the fluid which seemed likely to be mini pieces of blood. Within the hour he seemed better and went out to play with his sister in the family room. I was in the kitchen when the nurse decided to puch in his meds while he was trotting around beneath my feet. I offered to hold him as he has been yanking at his G tube chords whenever they could be accessed. As I reached down to hold his hands, he instantly locked into the contorted rigid posture and stopped breathing and again became hypoxic. The nurse grabbed him up like one big solid log and ran him to the oxygen and again he went limp and grey in her arms. This one lasted about a minute and a half or so. WHY WHY WHY.. 2 events in one day after such a long time without incident?

Yes, we used to experience this constantly when he was a newborn home from months of investigation in the hospital.. and no they never fully understood these episodes.. but they seemed to respond to the medicines he was put on for seizures and for brady/ autonomic vaso vago syncope events. These have always been distinct from the bradys where he just drops his heart rate all of a sudden and turns grey..but I guess we came to think this was the same except that the heart rate maybe stayed down low enough to cause a hypoxic type of seizure. Yes, they have captured on on EEG during a code blue in the hospital and it did not show as a typical seizure but I am just perplexed because the one thing that did seem to be ruled out before has now yet again surfaced as a question.. breath holding or apnea.

Let me explain why this old theory is being resurrected. SO.. after having 2 of these events, we called the Dr yet again to see if we should head over there and they said probably not since our Dr. was out and the Dr covering was so unfamiliar with Sam. So.. I called the cardiologist and neurologist and left messages. The cardio nurse returned my call with a voice mail saying check in with pulmonology?? and they neurologist did not call right back. SO I made an appt with our pediatrician for the next morning hoping it was just some ear infection or something bringing on these symptoms.

During the exam, low and behold, Sam decided to perform for the Dr and sho him a mini version of this type of episode. I was actually somewhat happy to have him witness it. Again he looked incredibly scary and rigid and seizure like and hypoxic and then limp and then unconcious. This time, however, we did not have our oxygen and it was scary seeing him lay there so blue with no resources to help him. The Dr seemed stunned and did not even really seem ready to jump in to bring him back up himself. The nurse worked to stimulate him and within a minute he was back up and looking at us again. The Dr. threw up his arms and said it was beyond his realm of expertise and that we needed to see neurology and get on an anti convulsant right away. But then I explained that we are already on one (somewhat suprised he did not remember that since I am farely certain he has few kiddos as complex as Sammy).. but he said then that we needed another one and that he needed to not be provoked or made mad etc.. and that this could be very concerning behavior for a child with his underlying condition. He then explained that he thinks this was a breath holding event that led to hypoxia. BUT THIS SEEMED SOOO ODD TO US SINCE HE NEVER SEEMED TO HOLD HIS BREATH.. He went into the seizure looking behavior too instantly and it seemed completely out of his own control. He was not "there" if you know what I mean.. so chicken or the egg is again my issue.. seizure leading to hypoxia or hypoxia leading to seizure.. what happened?

I will not go much deeper into what our nurse had to say about it but let's just say that we are left very skeptical about this Drs opinion. This may be partly because he then seemed annoyed when the neurology office asked for a seizure medication blood check to see if he was at therapeutic levels. WHY would he question this request if he just got done telling me we needed another anti convulsant? Also.. further.. with his mito condition clearly being one where the crash of symptoms is worse with illness or underlying stress, why did he not order a CBC or dive a little deeper into the question of why this kid who has been mainly episode free for months and months all of a sudden starts having a string of episodes in one 24 hr period? Seems odd but I am not the Dr.. so I will have to ask these of the next Dr of which the buck has been passed to.. (sorry if I sound sarcastic or tempermental.. I am just so so so tired of this ping pong game of which new Dr will take a hit at the ball, with everyone hoping it falls under the next specialty brought into it).

SO.. then in final summation of where we are today. Luckily.. no episodes today and happy in the morning but very moody this afternoon.. We got a call afterhours from the nurse reporting that his seizure med levels had dipped below therapeutic levels and that the report would be sent to the neurologist. Then the nurse became concerned that it should not wait to be addressed till monday's appt so she called the afterhours neuro team and they (hearing the event info) decided to up his dose. Of course they and we have noo idea if our Dr is right and this is some kind of self inflicted life threatening breath holding event or if it is some reflex issue relating to his autonomic nervous system, a lowering of Heart rate/ brady or if perhaps it is a seizure. I just don't think anyone is entirely certain..but one thing is for sure.. they all feel these are very dangerous and he needs a management plan or to figure it all out quick. Until then, his Dr instructed that we allow no stress on him.. no pushing his buttons basically. He told Sam that for now he needs to be basically spoiled rotten.
Not so easy to do with 3 other kids including a newborn to consider..so.. praying for answers, peace and less frustration. Praying that the med increase stops the episodes and that he stays pink all weekend. :)