Friday, December 31, 2010

New Year's Eve and the terrible, horrible, no good, very bad day

We had a bad day yesterday but today has not been so great either..looking at the positive though.. he is stable most of the time today and is not on the o2 and is sleeping at the moment.. or actually all day really.

Starting with yesterday.. He had a picc line placed in the morning and of course I knew going in that there would be complications..there always are. Sam is never predictable except in that I CAN ALWAYS count on him being unpredictable and suprising everyone by what we have begun to call "misbehavior". For those reading who are new to Sam..misbehavior is when Sam decides to stop breathing or his heart rate plummets out of the blue (no pun intended). This is called Bradycardia and for Sam who normally has a heart rate in the 120-140 range (normal for babies), bradys are times when his heart falls dangerously low..officially below 100 but not symptomatic on him till in 70 to 50 range. Picture below is example of him dropping from eventually stopped this time around 70s and then headed back up so not a biggie. He does this fast and with no warning and sometimes he does not turn back up too well. This is bad in that his heart has stopped before for short periods which is called asystole. I know you were not planning on MED101 class but Jason teases me that I have gotten so comfortable with the terms that I don't take in the general public's learning curve on this stuff.

So yesterday I counted on more "bradys" during the picc line placement procedure down in interventional radiology. They do it with basic anesthesia and they usually only require an LMA tube placement which just keeps his airway open at the mouth and top of the throat. I made sure they knew with mito kids they have to take malignant hypothermia precautions. As usual, when Sam is given meds to relax...he really relaxes. So, he had to be intubated and that was our first unplanned aspect of the procedure. Then they found what was thought to be pneumonia in the top of the left lung and then to make things more fun, the usually easy insertion of the PICC Line was complicated by him not clotting well. This Picc line is a central line to an artery near his heart which will allow easier and less damaging access for giving him medication and TPN (liquid food). The radiology Dr said he had to put pressure on it for a while to stop the bleeding and it was not an anticipated situation but he kept telling me he could see how complex Sam was and how sorry he was for our anguish. Very kind man. What situation with Sam is EVER an anticipated one?? Maybe the blood clot issue is related to his dysautonomia or one of his many meds.

They did get his blood to finally clot and then were able to extubate him but he required 02 through the night. He has been off it and only has occasional bradys and desaturations of his oxygen levels at this point.

Part 2 of the terrible, horrible, no good, very bad day (I love that book..) was a not so thoughtful Dr who needs some "sensitivity training", as the social worker gal put it who always checks in on us. This guy was consulted for some reason and I have no idea which specialty but he came in and was having me fill out an insurance claim form he needed when he asked me about Sam's new diagnosis about the mito disease stuff and while here went on to say, "do you have other kids?" yes I said..two daughters 5 and 4. "are they healthy?" yes.. we are very blessed that they are very healthy. He then proceeded in a flat and rude manner to say, "good..cause it does not look good for him." and with that turned and exited our room....AHHHHH. WHO DOES THAT????

Lord, thank you for giving me strength to control my anger at that moment. Before Sam's birth I never experienced such crazy interactions as I have this year. I know I am the LAST person in the world to make judgement about what people sometimes say or do thoughtlessly as I am the one who often puts my foot in my mouth during awkward moments but I sure hope I am never guilty of knowingly walking into a critical child's room and wreaking unnecessary havoc on a beaten up family's emotions. I wasn't born yesterday and I KNOW Sam's situation is serious and he certainly could have a bad prognosis. NO - I would not want a Dr sugar coating anything but my goodness..I don't need that kind of negative attitude from someone clearly NOT that involved in his care or even looking for solutions. Which.. brings me to my last issue with that interaction. I had the social worker looking up who this guy was and they could not figure out from his signature who he is.. should I be concerned that this random guy in a badge made me fill out insurance forms and signed intials KM in the Dr. field of the consult spot on the chart?? There are soo many in and out of here that I often can't make hide or hair of who is with what service. I usually ask but I was so tired and then he was gone in a flash. I guess I just needed to vent about that and let it go..

Today we also had another chest xray and rediology told us it was pneumonia but the pediatrician thinks it is atelectasis?? which is when the bronchi are not being fully expanded with his breathing and so condenses in and that causes the cloudiness on the x rays? either way she said antibiotics are on board.

Big part of today was the Gastric Emptying Study under flouroscopy. He failed. It took him 121 minutes to move less than 2 ozs (6 ozs is a regular feed for him)from the stomach to the intestines by g tube. UGH. He will likely require a G/J tube placed to bypass the tummy and go on to the intestines. But my issue is also that the intestines are always really slow too so will it solve anything? He is on laxatives 3 times a day and colace stool softener and still sometimes goes like 9 days before he stooles. UGh. They can do a pyloro plasty but that is permanent and I so hate permanent stuff plus if this is an energy muscle issue.. will it solve anything to be just opening that up more so it can sit in traffic in the intestines? Plus he might not have good energy stores to get through another big surgery. He coded a bunch of times after the last one and then stopped tracking for two months..way too stressful for our little man.

On a sweet note..Sam does not laugh out loud but he has the sweetest impish squicky laugh that can only be heard with strong ears but has the biggest smile you ever saw when you play the animal finger puppets a friend sent us..Thank you Roake Clan! He loves them! His nurses have even jumped in on the act. We can't thank all those praying for Sam enough for all the prayer..we feel it and know you are the reason Sam stays strong. He is teaching me everyday about joy and God's gifts.. real gifts are love and family and friends and connections..all the other junk can just go out the door. If you don't have love and build bonds and enjoy the moment and learning from eachother and have nothing. But through God... we can do all things! So that is where we are today.. terrible day or week as it is right now..we can get through it and onto bigger and better days.

God works in mysterious ways. First, He brought a kind friend to my rescue yesterday right after the not-so-nice Dr left..just as I was needing to get us checked into the ron Mc donald house here so that when Jason arrived with the girls we would have a resting place for the weekend. I needed a ride over there and was a little down and flustered. She called at just that moment and said.."guess what, I am right across the street." I can't believe she drove an hour with her family of 5 to have like 10 minutes with me but it was such a blessing and her family watched the girls while Jason and I got to pray with Sam at his cribside last night. It is rather rare for us to be able to do this as siblings can't be in the PICU. SO I thank God for her friendship and for all my friends who have been such a HUGE support.

Secondly, we ate dinner together as a family at the house as we were unable to reenter during shift change. That is a nervous time for me to leave Sam alone and then in walked Richard Lamar, a friend from Highschool whose baby was born 11 weeks early when his wife was forced to deliver due to preeclampsia and HELP syndrome. Their baby is like 2 lbs and in the NICU here. She is doing ok for now but Lord, please watch over baby evelyn and all those innocent little ones in the NICU. I hope we can be of support to them when they need it as we have become pros at some aspects of this experience. Their family needs our prayers and I know as this is their first child, that they are probably really overwhelmed.

The last little info I am trying to figure out is the plan for moving forward..should we be transfering to shands or atlanta and can we do that with the new insurance not in place and the old ending today? His GI surgeon is at UF and we loved him but hated neuro there for delaying the biopsy and dismissing him as a newborn who would probably "grow out of this" plus they kinda got to a stuck point and left us with the tracheomalacia diagnosis and no other ideas. They left me with the impression that likely the airway issues were caused in utero, at birth or after and this led to neuro damage leading to more systematic damage which could still be how the mitochondria started dysfunctioning but seemed they gave up on more investigation at some point. For cardio surgery if pacemaker was needed and for the mito GOD we loved atlanta...and so that is another good option. They only have one surgeon and a handful of outpatient type GI guys and so resources are limited. They can't even place the GJ till the surgeon returns from vacation next week...boy we live in a local yocal area if the only surgeon at the biggest hospital we have an hour from home is not even on-call!!

I need to see about how insurance issues would work with the agent.. He called today to say maybe we should sign up for cobra as a 3rd level of surity that we don't have a gap in coverage while we wait for independent insurance coverage.. I am sooo nervous. We can't afford ambulance again as we have been slammed this year in paying for those each time so would that mean holding our breath while we drive 6 hrs with IV poles out the back window and tanks in tow? yikes. What to do.. What to do.. well I will sign off for now..God Bless.

Thursday, December 30, 2010

Tank is empty and Sammy is smiling

If you are not up to date on where we are now with everything..scan on down to last night's blog and info about the news from the diagnosis.

Update this A.M.:
Sam had a MUCH easier night with nothing in the Tum Tum. He was even smiling a bit. We got to come off isolation status as all the viral tests came back normal. Not a suprise to me. I don't really think he had a big bug. I think the slight fever from the vaccine put him in a weak state and the mito issues led to a total breakdown, the GI of which is usually last to hit. So we will have to figure out a new protocol for vaccines..I want to say no to them altogether but all these mito docs say for all the problems mito kids seem to have with them it would be FAR worse if they got exposed to one of the diseases covered by those vaccines. EEECH..need help on weighing out that one.

We get the picc line this morning and they said he will be getting some gas for the procedure but hopefully that does not put him over the edge as in the past. That should be in the next hour or so and then he can get much needed TPN. They said a permanent medport can be placed outpatient under the skin for long term central line use but a Picc line can be kept for up to a year I more thing to service at home though.

No reflexes in his right leg today. I know not to focus on the neuro stuff when I am already so worried about the gut issues, the bradys and the resp distress but I always worry the brain will loose precious energy every time we get sick. For all his limitations he seems very smart to us. I read an article that said these kids can have neuro decline in the 2 weeks following an illness because the body is sending whatever energy it can make to the illness, diverting it away from the organs that demand the most and so that is when his body starts breaking down. Gotta have some fuel and when your body does not make fuel well, then you end up stuck on side of the road.. or in our case this year.. the pediatric ICU.

My understanding is his brain is always starved for energy which is why he has had diffused encepholopathy readings on the EEG. Maybe that can turn around once we start the new mito cocktail that was ordered. Those meds are intended to improve the bodies ability to produce energy on a cellular level.

NEED YOUR PRAYERS.. and not just for Sam to get better but on a different level for a huge issue that is hitting us hard. Our very fancy $1650/mth group insurance policy is terming tomorrow and we have applied for a new independent insurance policy also through BCBS and hopefully will be a more reasonable cost and not more than a mortgage payment as is the current policy. We left our current agent when he negatively told us that even though the law says Sam can not be denied for prexisting conditions, that the insurance company will find a way to deny us..that would be fraud in our assessment so we went with someone who will fight for Sam's coverage.

We have been slammed financially from every direction this year and we need some prayers for peace and control. If we could obtain nursing aid at home I would able to help more with Jason's business and so we are praying for a solution on that level as well. Thank you for all the prayers. Forgive me for the long posts..I am missing my mother so badly as she is way down south visiting my sister. She is deaf I can't call her so this is the only way to communicate. God Bless.

Wednesday, December 29, 2010

What a way to start the New Year..

Sorry in advance..this is going to be a long one..

Yesterday may have been the hardest day ever for me..and let me tell you.. I have had a few by now :). But I also have had some wonderful life experiences and gifts to be thankful for and for which offset the worst times by huge measure.. I am emotional at the moment so I will probably end up saving this and waiting to send it out when I can remove any words of anger and "clean it up" for sake of the innocent.. We were already dealing with Sam's chronic return of illness in the past week. Basically a repeat behavior of the illness from 2 weeks ago and also of the one from before Thanksgiving. We worried we might be back in the hospital during Christmas but somehow we narrowly avoided it but are here now. Then on Monday, I checked my email and had a big whammy of news in the form of Sam's 79 page report of biopsy results ..I know.. I know..we knew it was coming.

I should have been better prepared. I had actually called to check about it on Thursday and they said all reports were running late and so I dismissed it and moved on to worrying about his worsening illness. The report was mailed to us on Christmas Eve - Thank you Lord for redirecting me away from my email at that time so I could clear my head and give the girls some joy without crying through our birthday party for Jesus.

I saw the email and almost instantly called Jason knowing what it was. He would not stay on the phone while we read it and so I called a dear friend to stay on the line while I went through everything. I did not want to read it alone..I guess that is how Jason and I differ most..he deals well in solitude and I am a need-some-support kinda girl. I was so nervous as I opened this 79 page report of mumbo jumbo that only the brightest Harvard chem grad could decipher, that I nearly missed the whole point. Sam has defects of Complex 1 and 3 (maybe something wrong with 4 too) in the mitochondrial enzymology chain. Probable Mitochondrial Disease. UGH. Tough to swallow but we had known it was suspected. Why is it so hard to see it in print? It was insane how much this report entailed in its 79 pages.. I barely got two paragraphs in and I knew scarey stuff was lurking..I have since read it all and realize that there is too much for me to even begin to understand. The results mention other issues as well but all is well over my head. He describes lab finding after lab finding and more data than I could even comprehend. One biggie is that most who have this do NOT get it from their mother as many believe. Most get it in an autosomal recessive fashion or as some form of mutation or gene damage.

There is still pending research on some aspects of his workup and the disease confirmation is listed under probable because they basically need to find the bad boy gene for final confirmation of primary mito disease..This mito dysfunction could all still be secondary from some insult or other pathology. They have a mutation they are investigating. I have about a million questions.. So we will hit on those when we go to do our follow up in person with Dr S or his nurse on Jan 10th in Atlanta.

The nurse in their office says it is probably good that we don't fit into the 5% crowd that get an exact "syndrome" diagnosis with all the gene confirmations and linked info because that can mean we are farther along in negatory territory..but I feel already in the few months since we did the biopsy we are already in far worse territory than when he was clinically evaluated by Dr.S for the biopsy. We did not have the major GI shutdown going on back then..uugh. which brings us to why we are back in the hospital ICU again today.

Sam's illness of last week started after 2 vaccines Monday (our first since age 4 months). We made a plan to spread them out slowly (much more on this in a later post). He had low grade fever and then no fun at speech therapy and sounded junky, labored breathing and this got worse over next 2 days with higher fever of 102 which went away but he was still laboring and weak. He got started on antibiotics again for an infected ear and then all of a sudden GI started going capute again on friday/ saturday. By sunday morning we were having bradys and turning blue in my arms and he had a seizure which I think was likely due to his meds not staying down. When I say his Gi goes capute basically I mean that you either can't get it to go in the g tube or you get it in and he writhes in pain and pushes it all back out like vomit but through the gtube syringe used for venting. He had gas and not much stoole (which is usual issue for him) but what he had was loose. He is already on laxatives 3 times per day and colace. It got better when feeds were on hold for a while but then he would go into crisis when anything(even meds) were pushed in. He had bradyed (dangerous low HR) all the way home from an opthamology appt on monday in pensacola that monday afternoon. I was pulling over the car and giving oxygen and I guess in retrospect that was due to his bradycardia meds not staying in with these feeds.

I got worried about repeating the dehydration and dangerous bradys we had before where we got to a point that I could not even get little amounts of pedialyte in for days. So I called the GI doctor and he said we needed to be admitted.

So luckily, Tuesday the nurse was at my house for the last insurance allowed days and helped me get Sam packed and meds and records ready etc. I was graced by a sweet friend taking the girls. My family also agreed to take them over from her later. We peeled out of there and got down to the hospital in what seemed like took hours.. Of course with no feeds going he started perking up and looked down right calm when we arrived. They gave him fluids, did x rays and rectal exam all the while saying we would have to stay regardless of findings because of his crazy history and dsats he kept having. They then made me give him a feed just so they could witness his behavior..seemed like torture but we did it and boy he showed his true colors. He did not tolerate the food and furthermore started going into painful contortions and respiratory distress. He had a blue dsat episode and went back on the o2. I will try to post a quick video under my afewnegron account as sam12.28.10 if possible.

We were first admitted to the floor and are now in the ICU because he decided to misbehave this morning with another blue dsat episode. He had been dipping sats into the 80s but on this one he stayed down at 79/80 too long. The bad part about the floor was I called the nurse on the call button and said he is blue and I need help but noone came for like 5 minutes. By then he luckily had recovered but this has happened to us before on the floor and I got pretty mad. I think it was the meds they put in his tummy that put him over the edge. He is off all other food in the tummy. I had a sweet visit from my friend Jenni and we shared coffee and a change of scenery down in the cafe by the Christmas tree. Hate that our reunion had to be so short and in such a place. The last time I saw her was in Atlanta under similar circumstances.

So for now they are planning for Sam to get TPN (liquid nutrition basically) by internal port or picc line as they have stopped doing peripheral IVs for TPN at this hospital as it strips the this may actually mean we would leave with a port which could be helpful at giving IV fluids at home or meds in emergency but not having nursing at home with a port seems impossible for me to manage alone. To place the port he will have to go under and this brings more issues as he often misbehaves while under anesthesia, sometimes requiring intubation. Hope that is not the case this least now they do have a pediatric anesthesiologist on staff. I don't know at what stage we have to consider other hospitals. They have discussed pyloroplasty (sp?) if a gastric emptying study shows warranted delay but right now they are holding off on doing the study to see if he rebounds first. They think his gut just shuts down when it gets low on the energy fuel ATp what have you from bad mitochondria. I think in that scenerio I would prefer a G/J tube placement which would allow for feeds to bypass the stomach during those times when his tummy just wants to shut down operations. I hope we are not experiencing a worsening of his condition and that these last few illnesses have been just that..winter illnesses that he just can't handle like other kids. His little body decompensates or "crashes" as I often call it.

I have prayers tonight for several families. My friend Robin's father is being transferred to an LPAC in Birmingham today in a critical medical state and they are just trying to ensure a safe place for him of convalescence. I believe they feel it is just a matter of time and I know they are enduring great strain and grief. Her father is greatly loved by all who know him. My prayer is for peace and rest for him in a safe and caring environment.

I am also praying for another sweet mito child of a mom whose blog ( I often follow, back in the hospital as well with very similar symptoms/ circumstances as Sam's and even though I don't really know them, I pray for them often. Somehow I relate quite a bit with this mom. She was also a MOPS leader and Christian mom of 4 daughters.. I thought I had it crazy with my 3 munchkins! There are so many other sweet babies out there fighting this disease and it is such an aid to me to connect with them and learn from their they coped etc.. There is a United Mitochondrial Disease Foundation site( has also helped me in understanding more about this disease as it has such a wide range of symptoms. Most of these kids, like Sam, look so normal and it would be hard if you saw them to know what serious challenges they face daily. I certainly feel naive to only now understand more about the medically complex kids out there. I will probably pull together some of my research to post here the meantime we are focusing on treating his symptoms and thinking positively for the future! God Bless and thank you for those of you praying for our Samuel!

Sunday, December 26, 2010

A New and Glorious Morn..

On Christmas Eve, carols such as "Oh Holy Night" usually stir me to tears while singing with our church choir or listening amidst candle light in quiet prayer or worship. I have been unable to sing with my church choir due to Samuel's chronic health concerns and needs. Furthermore I was unable to go hear the beautiful sounds of our church choir for Christmas Eve services because Samuel fell ill Wednesday after I had worked so hard to maintain his health since our most recent hospital discharge only a week and a half before. But even though I was home bound for the holidays, I played Christmas CDs as usual to get into the spirit. Never before had I heard the lyrics and felt their meaning like this year.

"The thrill of hope the weary world rejoices, for yonder breaks a new and glorious morn. Fall on your knees and hear the angels' voices! Oh night divine.. Oh night that Christ was born."

I am on my knees and so thankful God sent his son to help guide us in living our lives His Way. I think of Mary on that night of His many ways not unlike any new mother. She could not fully know the role God had chosen for her life or how this one baby boy would change the world. I think of that night of light. Light from one northern star guiding the kings and shepherds to the One who would lead us through dark nights and show us the path. Our family is on a path right now of which we can't see enough far ahead to feel safe or secure but with Jesus at our side I know we have to trust Him and let him guide us.. and that has been the light shining through our Christmas season.. We know he has a path planned and will lead us. We just have to follow Him.

The last week or so was unique in that I had several more days of nurse aid at the house with Samuel and that was a blessing for sure...can't even put it into words. It is indescribable what it means to let go of some of those fears and all the medical data and duties and logistics for even a short time. She is incredibly capable and experienced with medically complex kids. She is detailed and very purposeful in her manner and care of Samuel along with her gentle and compassionate way of approaching him. On top of her experience she recently overcame pancreatic cancer in a most miraculous fashion and so certainly understands the side of being on the other side.

On Monday, I took Samuel for his 9 month well baby appt. We had skipped the 6 month vaccines while in the hospital and then had delayed out of concern over some conflicting research about the safety of administering vaccines to children that have mitochondrial disease. Without knowing if that is what Samuel's diagnosis will be, I was nervous to plunge forward without further research. What I found was most Drs agree that the risk of diseases that could have been avoided by taking the vaccine may be more dangerous than the suspected worsening of conditions or onset of autism reported by the families of these compromised mito children. It seems reasonable that the views of these families are correct, in that the already at-risk nature of their child's condition may make them vulnerable to the trigger and chain reaction effect started by being "down" on some bio- level due to the vaccines. So weighing all this out I decided maybe we would go slowly, start with only one or two vaccines at a time spread apart and possibly avoid the MMR for a longer period. That was before Sam got sick.. now I am thinking.. hmm maybe vaccines can wait longer.

Samuel had low grade temp monday afternoon and then a little heat at the site on his leg Tuesday morning. We did speech therapy Monday and Tuesday working with oral feeding and I always worry about aspiration when he sounds wet afterwords as he did with these sessions. But he seemed clear after short period upright. By Wednesday morning, he had a 101 fever, red cheeks and labored breathing. By that afternoon he was really having a tough time breathing and was running up to 102 fever or so which is very high for him. Amidst all his other medical issues, high fever is actually unusual for him. The Drs told us to treat Sam a little differently when it comes to treating pain and fever as with his dysautonomia symptoms, they are not entirely sure a temp reading is accurate to what is going on internally. By Thursday morning, he was struggling and the nurse was mainly holding him constantly as he was not able to sleep or come off the O2. I had done all of Jason's Christmas marketing stops on Wednesday with the girls all day in and out of offices and had promised a beach play date if they were good, so Thursday morning we went to the beach to trade Christmas gifts with their close friends. It was hard leaving Sam but I knew we only had the nurse for this finite time and the girls were starved for one on one time. It was beautiful weather and they had a nice time but by the time I got home Samuel was seemingly worse. The nurse had called his pediatrician and they wanted me to bring him in for a status check.

At that appt, she discovered more retracting and respiratory distress and his ear was infected as well again. More antibiotics and orders to keep him hydrated. He was tolerating feeds so I was hopeful that we could avoid another hospitalization, especially for Christmas. Our nurse offered to come Christmas morning and watch him so the girls could have some undivided attention and "normalcy". We finally took her up on it and that ended up being such a blessing. Samuel was ill to the point of moaning and struggling for air through most of Christmas Eve but seemed somewhat better Christmas morning, catching a little nap between periods of stress. The nurse left and we had to decide whether to join his parents for dinner down the road. We decided to do it because he seemed pretty stable but once we were over there a short time, he took a turn for the worst and it was not a comfortable visit for him.

I got really emotional as the girls jumped around enjoying presents from grandparents. They were so carefree. I remembered them at Sam's age on Christmas..completely different than his first Christmas experience. He was limp and moaning, gasping and weak. He was on O2 and pretty oblivious of anything. Then he stopped tolerating his feeding and was arching in agony. His GI system had finally gotten the message that the respiratory and ears were already feeling..this is the way of things for him as I am learning. Everything just shuts down like on the highway when one little bumper accident leads to a whole chain of accidents and traffic jams. I just want to get him on the shoulder of the road so he can drive on past to the next exit.. past all this mess.

We went home and he seemed a little better. I even tried to shoot a first Christmas picture. He was not much into that plan. We tried to make him comfortable and he finally fell asleep. It was a most difficult night however with several bradycardia events. In the morning, he needed O2 again and was having drastic color changes. He was in pain and then when trying to hold him, his face twitched and his eyes shifted back and forth in such a way that I was pretty sure it was a seizure. It was a tough morning and we were about to depart for the hospital when he fell asleep. We decided to back off on feeds and substitute with pedialyte. This seemed to help..he started breathing more evenly and actually had a good nap. We are still not sure what to do but I will definitely be paying a visit back to his Dr in the morning. One day at a time..for now I am just thankful the girls had a nice Christmas playing and singing and listening to beautiful carols filled with hope and promise for a new and glorious morn. God bless all the families struggling with grief or distance or illness this season. There is a beacon of light there to lead all of you as it is leading us each day.

Wednesday, December 15, 2010

There is NO place like home..

I did not have to click my ruby slippers together but somehow we did get back home on Sunday. I was beginning to feel sick being in that little room for so long. I could not use the shower in Sam's room as it was hardly a trickle of water that came out plus it did not feel especially clean. Sleeping on the pullout chair/ couch was NOT much fun as usual. The ICU is a different story.. much cleaner shower and not too bad recliner but then you often don't want to use either because you have more doctors rounding through constantly and things are more critical so you are feeling like you need to stay "on" with bated breath about his status and any treatments or tests...not a time to get much shut eye.

Anyways, before we left Sam pulled out his gtube and the tech just stood there blankly while I hollered for supplies then I was ready to go home. He did it again at home and this time the balloon had popped on it and we had to use our back up button..leaving me without a backup so until one comes..he better not mess with it. In the hospital they slowly inched up the rate of his feeds again with no particular understanding of why his gut shut down these past few illnesses. Seems as though if he is stressed in the smallest way, everything shuts down. He was looking bright eyed and bushy tailed though after the IV fluids and some rest so we hit the road sunday. He has been sooo happy to see his sisters and they were pleased as punch to see him. They have however been more difficult to handle in the "pushing my buttons" category.

At home Sam has had a few difficult periods tolerating feeds at a regular rate but overall he has been fine. Tuesday I had a visit from the nursing company about the details for setting up the only nursing care that insurance will cover which is NOT much. They will cover about 60 hours total per year so we are getting about 8 full days between now and end of the year. While in the hospital we agonized over how to obtain the care he needs but I am still completely blocked on this. If we stay with insurance they won't pay anything and now that we are having to change from our ultra expensive group plan..we will be lucky to be approved by a new independent plan. Kids are legally now not allowed to be turned down for preexisting but our current agent was pretty straight forward about his feeling that they would find some kind of bogus reason to not take Sam. Our group is going to be even smaller now so we may be looking at an even more expensive group policy as well and that may be impossible for us right now. We still won't have the nursing home care either way.

I have been researching a secondary medicaid waivor which is based on his disability and not on income etc..It comes under something called the katie beckett law which is specifically for kids that require medical equipment and involved care such as Sam does. It is apparently more readily available in other states but nearly impossible to access in Florida.

Today we had the nurse for 7 hours and BOY... what a day of clarity of mind and spirit it was for me. I was a little sick to my stomach leaving him when he has hardly ever been out of my grasp but I needed to trust someone to take some of this off my shoulders a little for just that short time. I actually left the house without lugging tons of medical equipment... wow what a feeling! I did not have to think ahead about every med that would need to go along or how much food should be primed in his pump or whether oxygen should be brought along just in case.. or whether Sam would be comprimised by my need to get groceries.

I was able to watch Sofie in her musical program at church and run something into Bella's class that was forgotten this morning. I can actually see how I would have a life again if I had this kind of support.BUt it is not like finding a babysitter..nursing is very expensive. I could work and contribute to finances though if we had this help. I could be fresh for the girls. But all we get is these 8 days so it is a bit of a tease. I am thankful God has given us this small break and I hate to be greedy but please..if you are listening Lord... we need the extra support. Show us how to make it work so that Sam can thrive and grow safely in our home without pulling everything we have built to pieces. For now I am just going to keep praying and doing my research. I am sure it will all work out. Bless him..he is worth every agonizing moment. He is so sweet and innocent. He looks at me like..I am sorry mom that I have my own set of instructions and don't fit the mold. He is absolutely perfect to me.

Friday, December 10, 2010

Home sick

We are sooo ready to be back home. I miss my girls and they tug at my heart every time I talk to them. They beg me to be home and ask why Sammy and I always go away to the hospital. I blogged yesterday and did not publish it because it was a little was the 15 yr anniversary of my dad's death. I was only 16 when I lost him..half my life ago. Yesterday was maybe the hardest anniversary yet because it was lonely sitting with my memories. I wish I could go to him with some of this, but in some ways I guess I feel his presence and him weighing in when I go to God in prayer. I would give anything to just have one hour with him again.

I think my day took a turn yesterday when I passed a chaplain who had prayed at our bedside with Sam and I the day before. She was walking with a family in tears who looked rather shocked. I remembered that feeling..that moment when they told us he was gone..Only that morning he had asked me to drive him to the base for some Christmas shopping. I had my learner's permit and normally would have lept at a chance behind the wheel, but Jason had called and I chose a trip to the mall with him instead. Dad was crushed in his car that day. They fought to save him while we waited in a room nearby with our pastors. Everything changed that day but he is still with me and I know he watching over us. I remember his face from our last exchange as I did my hair in the bedroom mirror. "You sure you don't want to go? I love you," he said..and then he was gone.

It was one year ago yesterday that we also said goodbye to Jason's grandma, our mimi. She was quite a force in our family. It is not the easiest time of year for anyone who has experienced a loss. I think it is because of the heightened emotions and memories. I usually find personal strength and overcome those feelings by focusing on all the joy of the season. I think of all the blessings and the fact that we DID get to share beautiful memories with those we have lost. By the end of the day, I felt better and I loved all the more on my sweet baby boy. He is such an angel.

Sam has begun to tolerate small feeds a little better and is inching up in rate at 5 then 15 ml/hr to now 20 mls per hour..a long ways away from a normal feeding rate but we don't want to overwhelm him. He was moved from ICU to the floor today and we hope to go home soon..ICU, FLOOR and OUT THE DOOR!!

Sam met Santa for the first time while here and has had many sweet visitors from local churches and organizations. Tonight he heard carolers and it reminded me of how much I enjoyed caroling last year. Some of my MOPS moms went around to those of our church unable to leave home and at the local retirement home. It was the highlight of the Christmas season for us and I am touched that people are doing that here for all the sick children. It is sad to think of children here on Christmas..I hope if we get out of here soon I will get a chance to pass on the cheer and joy of Christmas as it was shown to Samuel this week.

Wednesday, December 8, 2010

magical fluids on ice

Since arriving late Monday night, Sam has been on IV fluids with no tummy feeds as he had not been tolerating those at home and it had been pushing him into major respiatory and cardiac distress. There could be any one of a bunch of varying opinions of our doctors who all seem to have beducated in the carribean or some other medical university I have never heard of before..not that they are not determined and compassionate..they really are but Sam may just be a little complex for tthem here. So here are some theories:
1. He could just have a virus they have not found in bloodwork with multisystem involvement.
2. He could have had another "crash" of sorts which would indicate a metabolic breakdown like that of mitochondrial disease.
3 He could have had some GI block or issues that are causing tummy to press on diaphragm and stress autonomic nerves which then slow down his heart.
4. He could have some transitionary weakness of all systems..
The bulbar, stomach and intestinal muscles from some neuro or myopathy origin.

One big thing that happened yesterday was hearing news from the Dr here that they madecontact with Dr.S and found out that another test result from atlanta came back with concerning results of. Some nature..unknown to docs here or myself. Certain acids were at bad levels or something and so they have requested that urine and plasma be collected here and overnighted on ice to a lab in. Colorado where some of his stuff has been being analyzed..nervous nervous..whatever glutamate alpha whatever is off..will that lead to answers? Praying..Dr. S also told my. Dr. Here that we may not have answers from biopsy in the 6 to 8 week time may take more like 12 weeks..ugh!

I hate to make light of a scary situation but I keep thinking of that song for a checkers burger commercial .."You gotta matter who you think you won't get gotta eat" the mission for today is EAT Little Guy..Let food in your tumm tumm!

HUGE AMOUNT of Prayer going out to my friend Robin today..and it is her bday too.

Tuesday, December 7, 2010

Back in the joint...

That's we go again..of course I knew we would end up back in the ICU eventually but I was hoping not again in 2010..never a dull moment. He became sick this weekend and we could not get him to tolerate food so we kept trying pedialyte but it would make him writhe and scream out in pain. We began to worry about dehydration and his bradys were happening so much more frequently that I had him on o2 more often than off it.                  So we  we finally reached a point last night where it felt unsafe to stay at home any longer..and after 3 days of no sleep I could not figure out whether it was safe to try to drive us the hour to the childrens hospital or go to local ER and be transported..can you guess which one I went with?  Did I sleep in 3 days..well needless to say it was the scariest drive ever at midnight on dark interstate with  Sam struggling in the back and periodically tummy emptying into his open syringe venting his tummy..yucky horrible drive but thank you Lord for guardian angels as my good friend Jen helped me immensely with her calming advice and directional aid as my phones GPS would have dumped us out in the red light all my no sleep frantic momma wisdom i took the road less traveled by..and it almost made all the difference. yikes...                                                                                                                            So we made it here and found out my Dr had set up  a direct admission to ICU which was a saving grace and then we had to do that agonizing history run through  all though the attending knows sam well and has cared for us since birth..then the most miraculous thing  happened...sam went to sleep..nov agony and less struggle breathing..of course sating at 100..they must think i am loosing nurse says clearly going NPO and stopping all trys at tummy feeding must have made the difference but now he has risen and still no episodes of bradycardia but he is junky..he is getting iv fluids and so hopefully after that goes in he will get stronger so we can go home soon..they said no viruses showed on the labs and yet..he cant seem to handle anything in his tummy without total crashing failure to breathing..heart rate..etc..for now we will just wait and seee..they said they may ultrasound his more test..praying for girls and jason to stay the course at home with little upset..sure it was another shock to them that i am gone..hate that they always have to find out i have left after waking up. if my grammer is amess it is because i am doing blo on cell phone..hate tiny buttonss..signing off for now.

Sunday, December 5, 2010

Out with Scrooge and in with Christmas Spirit

Sam took a bad turn last night and is very sick again. It was a shock as he was great yesterday morning and even saw the Dr when we took the girls for flu shots. I should have known when he sounded kinda junky and was having more and more bradys that we were on a downward spiral. So..we were up all night as he was not breathing well, turning blue in spells and struggling and then also not tolerating his feeds. We are exhausted and maybe a little slap happy at this point. I must have prepped for the ER 10 times but Jason is convinced that there is NO point in going to our local ER with Sam.. and I hate the idea of another ICU stint..can't we just help him get past this here at home.. Having a nurse here would be GOLDEN. Our Dr said to go ahead and bring in the nurse for whatever the insurance would cover which I imagine will be like 1 week and so I called them this morning..the woman must have been thinking.. "why is this woman calling on a sunday?" Well.. because I am over tired, can't remember the day of the week and just plain desperate for aid!

Sam had a fever but I think I have it under control and he is resting for the first time since nap yesterday..Jason has crashed too and I am staring around in horror at all that the girls did to pull the house apart last night and this morning in our distraction of dealing with Sammy.. well no biggie..I had more decorating to finish today anyway and was bound to get messier before it all came together. The problem is when Sam is sick all you can do is hold him and try to make him comfortable as he gasps and pulls at every breath. He is so miserable. Getting emotional is not going to turn it around so we will focus on positive Christmas feelings and pray for stronger days.

Going into this magical time of Christmas and all the changes of transforming our home over this past week.. I have decided I am redecorating my mind and spirit as well... OUT with Scrooge and all the baggage and negativity and self doubt and worrying and fear....and IN with the Christmas Spirit and laughing over the things we just can't control. If I don't learn to laugh about it and accept it and trust God every day..(and not just when it is convenient).. then I really will go bonkers.. so with that new frame of mind I am going to find my inner peace and joy and shut the door on the rest whatever cost!!!

"On the 1st Day of Christmas my true love came to me..." and said:
BIG changes are underway.. Jason made a decision to branch off from his partnership at the firm and fly solo. Overhead was way too high and with all Sam's medical bills and so far no luck at securing the nursing aid that would free me up more to aid in finances..we have to be able to cut corners and make our own budget decisions. He is planning to stay in the same location and most everything will be the same except now we can control the figures a bit more. It was a scary proclamation for me to swallow at first because I feared loosing our insurance in the transition but I know it will all work out. Praying our new insurance does not go up much higher than the $1600 we are already paying each month.. but I am sure it will all work out. This year has humbled us a bit after being so stable at a young age only to realize one event can totally rock your world.. but we are very joyful and thankful for our blessings.. so any changes don't have to be scary.. it is all just an adventure right?

The reason the 12 days of Christmas song came to mind above was I read a blog recently that really had me in tears relating with this other mom as she blogs each of the days of Christmas and did a 12 days list of their 12 specialists who work with their daughter who has mito disease (the disease we are awaiting our results on regarding Sammy).. Their story has seemed eerily similar to ours in many ways except they are farther along in the journey and seemingly more adjusted. I am inspired by her humor about life and I found myself laughing over what I would have thought if you had told me last year what was about to happen or even shown me a peak at her world... boy was I clueless!! SO here are my 12 days of Christmas for all that craziness that the last 8 months have brought anew into our lives after the traumatic arrival of our beautiful son.. the thing is that it also brought more love and closeness in our family than ever before.

"On the first day..."
1 G tube button, 2 invasive surgeries (gtube with fundoplication and the muscle biopsy), 3 ambulance trips, 4 wonderful therapists (speech, physical, developmental, occupational), 5 continuous EEGs, 6 concerning seizures (not caught on EEG), 7 hospitalizations totaling 11 weeks this year, 8 weeks of ron mcd house stays at 4 different houses 9 different medications (caffeine, prevacid, many antibiotics, Coenzyme P5P, Tegretol, Colace, Milk of Mag, Miralax, and Robinol), 10 pieces of medical equipment (heart moniter, feeding pump and bags, 02 compressor, 02 tanks, various size syringes, needles, Mic Key extension kits, nebulizer, handmade pulmo back beater, and the all important breast pump), 11 Various medical tests done in triplicate (Cat scans, MRIs, Sleep study, EKGs, swallow studies, radio nucleid reflux studies, a million X rays, laryngoscopy, bronchoscopy, halter monitering and more blood work than I have ever seen..), 12 different types of Physicians (obgyns, neonatologists, pediatricians, ICU intensivists, neurologists,
pulmonologists, cardiologists, geneticists, Mito specialist/neurologist/ geneticist/ biological scientist = total brainiac, gastroenterologists, anesthesiologists, and general surgeons)...
Fa La La Laa...    and that was all just the tip of the iceberg!

Thank you Lord for humor and for only allowing us to see this list in review and not before we needed to know what lie ahead. Lord help our Sam to get well again..and stay well.