Wednesday, October 27, 2010

Fall Fest

Our church fall festival was this past weekend, a welcome distraction from all we have been coping with over Sam. I think we have to find our "normal" and just start living more.. We can't stay stuck in this neutral mode..I am ready to move on to whatever God has planned.

The girls threw on last minute costumes and we headed out for a fun family outing. I suspended my worries about the many millions of microbe viruses that could be awaiting in the crowd to bring illness to Sam. We can't live in a bubble and his growth needs to include a wide variety of experiences. Isabella dressed as a clown and Sofia was a care bear.. rainbow bear to be exact. Her outfit was about 6 sizes too big but she absolutely had to wear it even if the trim dragged behind her. They loved the bouncie castle most of all and Isabella especially enjoyed the dangling donut game.. however she could not manage to keep her hands off the donut. It is always a great event!

Monday we had to drive an hour out to Pensacola to get Sam's medication that keeps HR in check and that was a big ordeal during rush hour with 3 kids. Even better is that the insurance company won't cover the meds as they are in IV form (although I draw it up by needle syringe and then just put it in his gtube). The pharmacy furthermore could not give me his full months dosage as they would have emptied their supply needed for within the hospital stores so they apparently "owe" me the remainder.. not looking forward to more long drives to that pharmacy. You know you have had too much history there when nurses in line with you already know your son and are excited to have reunion time with him while you wait. But the real kicker to the day was driving home while Sofie continuously tryed to take off the seat belt. I was soo mad and I finally had to pull out the big guns and tell her she would not have her "lovey" to sleep with if she did not stop it..well that ended badly. She absolutely lost her control..and eventually made herself sick all over the floor of the car out of anger..needless to say, it was a loooong night scrubbing the car. YUCK.

As for Sam, he has been doing pretty well with only one bleep on the radar this morning. He had a brady (low HR drop) while I was doing dishes and on the phone long distance. He had been just doing floor play time and nothing seemed to bring it on but when I got to him he was a washed out grayish tone. All it takes is mere seconds. This is why I can't ever feel comfortable out of the room or while sleeping I jump at the smallest noise. His HR did quickly come back up and all was ok. It was the first episode since the drops post op last week. I have to get him in for followup with his pediatrician this week. I know the big question I am not ready for is about vaccines..we have always stayed current with them with our kids and Sam has been the same but as he was in the hospital for so long over past month, he missed his 6 month set. In the meantime, I have found some concerning reports from parents of kids with mitochondrial disease (condition he is being tested for along with others) that they have had major adverse reactions and regression following vaccinations. This group for some reason seems to be possibly at higher risk of some type of trigger to additional problems. we do them without knowing our diagnosis or just space them out or just not worry about it..? This will occupy my mind all week I am certain.

Well the other big news of the week is that we got to enjoy some time with my grandparents (my mom's parents) who are down visiting in the area. The girls and Sam really enjoyed spending time with them at dinner tonight after Bella's soccer game. It was nice having a relaxing meal with family and Sam was lucky enough to get some time watching his little cousin Eleanor too who is a little over 4 months older than he is. I will have to get some pictures of them together before they head back to Germany.

The only hard part of today was getting an email from the specialist who is analiyzing all Sam's labs and biopsys in his lab. They sent me a new patient report summarizing Sam in general and then what they would be testing for and possible was not easy to read. Setting that aside though and just planning to be optimistic and await the results..It will be a loooong 6 -8 weeks. I just hope that if they are going to show something that it is not vague and cause more questions. We have enough already. I read a few blogs from other parents who are in similar situations and it seems they went through a very long process for a diagnosis and the muscle biopsys were not always clear enough to give a set answer.. I think that is a reasonable expectation..we just have to know what we are dealing with.

Lots of Halloween plans ahead for the girls. I am going to be a giant crayola crayon for Sofie's school function..never thought I would see the day that I would be caught in a crayon costume.. but the kids will love it!

Friday, October 22, 2010

Wheels down..

We are home! Three beautiful words I always take for granted. I could not update the blog last night as we had to stay in the hospital for monitering post op, an unexpected but yet not unexpected turn of events. He just had some bradycardia and dsats following surgery, all ones that he recovered from on his own but when coupled with a little noisy breathing, his anesthesiologist thought it safer to have us stay the night. Of course he settled down after that and had a pretty uneventful evening. We took an angel flight back here this afternoon with our same pilot from before - what true angels the people of angel flight really are!!

Upon walking up our front steps to the house, Jason tried to prepare me for the craziness of a house turned on end from a dad trying to survive with 2 little girls on his own...wowsa.. I had to just laugh. It really was comical because I thought things were a bit crazy and disorganized the day we had to suddenly go but I never imagined the potential of a couple stressful weeks. Ha I am excited to get us back in tip top shape and that effort may be a good distraction from the agony of waiting for test results over this next 6 weeks. Sam is managing his pain well, not requiring much of the loratab meds prescribed. He is just happy to be home as was evidenced in the smile he gave his dad. We may still have a pacmaker in his future if we can't manage things on this medication but for now we are glad he did not have to endure the recovery from that procedure.

God sent us a true gaurdian while in Atlanta with the kindness and assistance of our friend Jenni. I also could not have made it out of here and over there without Robin's help. My inlaws and my mom and sister were a HUGE help with our girls and Jason could never have managed without them. The prayers from home and family far away were as always the medicine we needed to stay strong and keep up our stamina. As I have experienced before, I met families of amazing courage and faith within the roanald mcdonald house walls. If you are looking for a charity that impacts lives in a direct and intense manner.. it is this organization and the angel flight organization. We have already been told by both that they will help us in the months to come after our results come back when we have to return for followup. In the mean time.. we will be guarding Samuel's health and working on how to utilize his therapy best.

The last thing I wanted to include was a few lines. This is not really a poem per se but rather a stream of consciousness of the words that came to me in reflection during the raw periods of waiting for Sam to come out of surgery.

Fresh from God, struggling..saving.

flooding pain
pounding chest
humming pump
endless time, ticking..ticking

failing nerves
swirling gut
racing mind
many questions, reeling..reeling

healing prayers
finding grace
lifting hope
hard decisions, pacing..pacing

waking eyes
trembling body
trusting arms
little warrior, fighting..fighting

giving thanks
growing power
cleansing peace
Gift from God,

These are just some words that I found myself jotting down to get out all the stuff that was filling my head. This has easily been the most challenging time for me to deal with emotionally but I think our family is going to ride out this storm and look back stronger on the journey. For now we are just looking ahead.. but not too far ahead. :)

Wednesday, October 20, 2010

looking for answers..

Lord - Forgive me for selfishly wanting to control everything in my life. I know it is all in your hands. Tomorrow is our muscle and skin biopsy and lumbar puncture (spinal tap?) and gathering of all blood amd samples etc needed for the scientist researching Sam's case. Please give Sam strength and help him through what should be a relatively basic surgery. Nothing for our Sam has ever gone the simple and smooth way and we are told he is at high risk for anesthesia issues. Lord, help Jason with these last few days keeping the girls and life at home going smoothly till we can all be together. Help our girls to understand that we will be home soon and that amidst all this craziness, we will find normalcy for them. We are so thankful, Lord, for all our blessings and for each moment, and smile and kiss we share with our son. Our children are such gifts in whatever packages they come. We thank you for making us a strong family that can get through hard times and for the hope that keeps us all going. Thank you for the people who come into Sam's path and are kind to him and pray for him.  Thank you for my dear friend that makes each day possible here in Atlanta..going as far as driving here in the middle of the night tonight to bring Sam Pedialyte for his preop needs. Help us to have opportunities to do the same for others too. I pray we have calm and peace tomorrow and find that tomorrow is just another procedure that shows how strong really actually made our sweet Sammy. We humbly ask that we may know more from these tests and that the knowledge will help us to better his quality of life.

It has been a rough day.. I kept it together through a long 2 hour meeting with the Mitochondrial specialist about all of Sam's history and possible prognosis. He would not venture to give me his full suspicions but did seem to think we would have answers which is far more than most have told us. He strongly felt our Drs had spent more time on the acute issues of the Bradycardia etc.. and not near as much on discussing with us the full nature of some of the possible neurological and neuromuscular implications. He did not beat around the bush and it made me have to face some realities that I wish I did not have to think about.. he pointed out some things I of course knew but did not like to analyze about Sam's overall development. It seems to soon to question certain things. we have to just get through tomorrow and pray that he has no problems with anesthesia. They are taking MH precautions with him especially due to his past issues post op and the fact that children with these types of symptoms are at higher risk of problems relating to anesthesia and or intubation. Thank you all that follow the blog and are praying.. we feel the prayers. Sam is being wonderful all through the week for me and I can tell he just misses his dad and sisters. It breaks my heart when he calls out for da-da.

Monday, October 18, 2010

Trying to keep upbeat

So..we are still here. It has been a Loooonnng week of basically not much progress towards pacemaker or biopsy because everyone wanted to moniter him. So now things are changing a bit. It does not look like a pacemaker is part of the plan right now since he has not had any of his big bradycardia events since coming here and they are hoping the medicine is doing its job. I am pretty sure we are not through with the episodes but since Jason and I are not wild about puttinghim throught the surgery for the pacemaker either than we may be ok with holding off to watch longer for problems. of course if this was an adult having these random sinus rythems they would be placing the pacemaker right away.. but it gets a bit more complicated with him being an infant and his past behavior under anesthesia intubated. So..we are back to square one. Then I found out today that the mito specialist that we had applied with is wanting to see sam for the consultation on wednesday and follow with the muscle biopsy at this hospital's sister hospital (CHOA at scottish rite) on thursday. I may have been unclear in my posts in the past... we don't know that sam has a mitochondrial disease.. it is just the theory they are looking into with further testing at the moment. So I guess we will be discharged from here soon and will probably stay at a ron mcd house during the week till ready to head home. I am missing home soo much and Jason has been really carrying the load back there between the girls and everything else. One day at a time. I just need to try and stay upbeat about everything and not get down. I am sure everything will fall into place.   

Friday, October 15, 2010

A spoonful of sugar..

Sam is having a good morning and had a great speech therapy session with his bananas..we are making progress!!!! Finally seeing some real light in this area. He was placed in a tumbleform feeding chair which hugs his body and makes him more organized.. it made a big impact on everything. He could not do the arching and moving away from the food as done before and much less choking faces.. he seemed down right pleased with himself! He does need alot of practice at this but at least we could get those naners in the mouth and he would play with it and move it around. Some of it was swallowed and a good bit came sliding out but he is working on it and that is HUGE for us! God bless him - he was blowing bubbles at me with the bananas and I loved it. God always shows us some light in dark periods...I do have faith in that. Funny thing is the speech therapist graduated from my highschool and her mom still lives in the niceville area.. wow - crazy!

So we found a little joy in what has been a nervous week of wondering what is next and what to do about the surgery stuff. I talked with a friend this morning and hearing the squeals of her baby and all the normal morning chaos made me ache for my girls but we will get back home soon and hopefully by then some answers are on the way. Jason had to get Bella in "fifties" attire for special dress up day at school today and when I told him to pu her hair in a pony tail with a scarf I thought he was going to pinch me through the phone. He is doing good just getting them dressed and fed and out the door.. hair and costumes are not reasonable part of his duties. The girls are probably telling him how to do everything and he is about sick of it. But he is doing amazing and I am so proud of him.

They are going to do a CPK blood test I think which may be one he has had before but I am so lost amidst all the many test he has endured that I just nod and say..ok and what is that one..? The spinal is the one that always makes me nervous but he has not had one yet, only been discussed at times. I think one hard thing is that Sam's blood work has never had obvious markers for certain off the charts in the acid levels etc..he has had slightly higher figures on certain things when I read the labs but nothing anyone has ever brought up to me as indicative of a particular diagnosis. They spoke about checking on his lower GI as all his studies have been to the upper GI. I think they are curious about the kidney function and liver but I don't think any tests have proven problematic. His perinatal exam with the the high risk ob during pregnancy did show abnormal dilation of the kidneys but what did that mean really? They obviously did not think much of it as it was on the report but never mentioned to us. so.. we are just waiting and seeing for now what they will do. In the meantime I will keep at the work on his feeding and pt and ot. He wants to get stronger. I know he is a fighter and in some ways is just a bit trapped in a body that does not always want to cooperate.

I am praying for some families of my church and being so far away I don't really have the updates on things. Mostly in here I pray for our doctors and those of the other patients.. so many sweet heart babies. They do alot of transplants here and it is amazing the level of medicine that is all around us. The parents with tears in their eyes break my heart. I went to a baby massage class yesterday and I may have already mentioned it in my blog but these parents had newborns undergoing heart surgeries and they were so scared. To recognize your own fears in thier eyes makes you feel so connected to them. I feel a bit like an old shoe in these wards by now and Sam is only 7 months next week but that first week in the NICU feels like a million years ago and these parents are right there in it. Then to walk near the entrance of the hospital where the parents of new "healthy" babys are heading home is a different experience..entirely different memories of taking home our girls.. a different set of nerves and fears, but no less heightened. God probably makes this journey of parenthood wrought with emotion and nerves because it trains us on where and how to handle fear. I just truly believe fear is not a place to live but at certain stages is unavoidable and we later look back and say.. how funny that I let that fear control me so much. How funny that I agonized over leaving my first in her room alone that first night in the crib crying or at drop off on the first day of going to the nursery. I am trying very hard to put the fears aside and face things with a sense of faith. God has always gotten us through before. Sam is having to do that on his own level too..and today with a little help and the security of a new feeding chair..he put aside some of his fear and tried to grow a bit. We just have to keep moving forward.   

Thursday, October 14, 2010


As of late Tuesday we are now at Children's Hospital of Atlanta at Egelston in the cardio step down unit. Last week our son's cardiologist recommended the pacemaker surgery and had it scheduled for this week in Jacksonville at Shands. We had done research however and felt called to go to Atlanta where the Sibley Heart Center seems to offer some of the best minds in medicine as well as being farely close to us. We had also found out that a nationally renowned specialist of mitochondrial disorders is in the Atlanta area.

Our cardiologist put calls in to switch to Atlanta and before I was expecting it we had a call to get to the hosptal on Tuesday morning. We did not have transport planned and it was a bit of a nightmare morning flying through my house trying to pack and call for flights. I was not feeling confident about driving Sam by myself to Atlant and if Jason took me he would have had to drive all day and turn right back towards home because of course we have the girls, the business and all the normal bills to pay. By grace of God, my dear friend Robin swooped in and took over the search for help. She got an angel flight arranged whenI had only hit barriers in that area. She helped me pack and prep Sam and his equipment. She was an angel. We rushed out to Destin to meet a private jet and pilot "Bill" from Georgia who with his partner were our second encounter with angels that day. The flight was rocky and turbulant due to weather and for a moment I was not sure if we were going to get there but we did and Sam did wonderfully. He was so happy and carefree, sleeping most of the flight. Then our third set of angels came to give us earth angel assistance to the hospital. Wow - what a kindness! This is a service organization that really makes a difference. They took a stressful situation during what has been a long road of stressful situations and made things easier.

So we got there safe and sound. We have since met with many different Dr.s and specialists pertaining to the pacemaker question and biopsy questions as well as a general look at what is going on with our little man. The neuro team did not want to muddy the water with too much more testing but genetics still have a few things they want to check. The cardio people are monitering him and although he has had some slowing rates to 70s, nothing severe or symptomatic. They said it is sinus arythmia which I guess has to do with the SA node?? basically what it seems they think is that some undetermined influence on the autonomic system (be it vagal nerve stimulation of some form or sensitivity or dysfunstion at the cellular level), he seems to periodically get bradycardia as the autonomic nervous system controls heart rate. Somehow his heart sometimes just out of nowhere drifts south but usually he self corrects without intervention.. it is those pesky times of needing intervention that have everyone jumping around to decide what should be done.

If we do the pacemaker there are some risks to furthering stress on our Sam who may not respond well to that stress in a hole host of ways. If he has a mitchondrial disorder there are quite a few concerns to keep in mind. Mitochondrial disorder effect multisystems of the body which is why they are looking at Sam for this. Mainly because he not only has the bradycardia but also a slow swallow/ suck motor situation, lower muscle tone at times, hyptonia in neck and trunk, seemingly low tone through his intestines / peristalis causing constipation, lack of coordination of movements and some odd color changes at times to hands and feet, tracheomalacia, and used to be failure to thrive (that can be swiped from the list now thank the lord..). Yet amidst all this.. he looks REALLY normal to most who see him which is why it makes it even harder to find the answers because you have to look past this cute face (yes I am a little proud) and see the whole picture. The problem is that if he has a mito problem than there can be issues with putting him through anesthesia might explain the probs we have had in the past post op worsening his symptoms. This is why another big procedure has to be weighed out carefully. Either way I think the necessity of the muscle biopsy has been repeatedly confirmed.

Well overall he is doing good and of course that is what happens when you enter the hospital in a non emergent way.. he is not having respiratory distress and seems the picture of health. Our 4th angel came into our path when My best friend of childhood Jenni came to our room and brought some things I needed and the comfort of her company. She is a til the end kind of friend even as we see eachother about once a year. She made Sam smile and got him playing a new game..  have to video it .. hilarious. He now does it with everyone. Basically she was making faces at him and he started blinking his eyes at her kind of like a sole version of peek a boo with out the use of his hands..he would scrunch his face a little and close his eyes then whip em open to smile at her. This got his geneticist laughing pretty good today.. what a HAM!
 They had us see genetics today for a lengthy rerun through on all his life history..and although we don't have any obvious reasons to believe this is genetic, there are always recessive things that could be at play and only come into fruition in rare situations..Regardless of popular belief I found out, mitochondrial disorders (if this is one) are not more likely from the mothers mtDNA(in the egg) as once believed. Many types are autosomal recessive from both parents or are mutations of some kind. Sam then had OT, PT and ST and I met with a ped nutritionist (quite a commodity that we do not have in our local area.). He has lost some weight since his arrival and my guess is it is from the increased work of being poked and prodded etc. We worked with eating bananas today and that is moving in right direction albeit slow and difficult. He sleeps alot and I am trying to keep his routine as normal as possible. He will be monitered through the weekend with more testing. They may do a spinal and some blood work...I think they are waiting for him to misbehave...watching a pot to see if it will boil.

I think we will know monday what they suggest and they have said it may come down to us making the final call. Can we sleep at night knowing he might have big brady event that could steal our baby from us or put him through this surgery and place the pacemaker? I welcome opinions realizing of course that we will have to make our own decision. So I am praying God can help us with those decisions. For now we have a little time to mull it all over. Till then we miss our family and can't wait to be home to them soon..

Friday, October 8, 2010


We got word this week from our Cardiologist this week that Samuel needs a pacemaker regardless of the medicine's impact on the Bradycardia since he is still having the pauses however less often. The week was a time of researching and agonizing over making a decision about the next step.. We have found a mito specialist in Atlanta that is world renowned for diagnosing mitochondrial disorders and as those are the suspected theory of the hour we started thinking it might be the way to go for the muscle biopsy even if it means we can't do the pacemaker and biopsy at the same time.. but upon looking into the atlanta area we discovered the sibley heart center at Children's Hospital of Atlanta, a well respected cardio program. Shands Jacksonville put us down for surgery this upcoming wednesday but today we decided to "jump trains" as the cardiologist put it and cancel the admission for Jaxonville and instead go to Children's Hospital of Atlanta. Standing up for our decision and being clear about our plan to go with the answers God was giving us this week took alot for me. I have a hard time not just letting someone tell me the best way to go..respecting my own gut feelings. But lately I feel gut feelings that I ignored may have helped us earlier and the times when I did follow them.. served us quite well. God talks to us in unexpected ways and for me it is no burning bush.. more like an insatiable hunger for better options.

The rest of the week was me trying to do some of the "normal day to day stuff." Sam started back into therapy Monday and was sooo excited to see his therapists again. He has 3 different "girlfriends" and he is a major flirt! Then tuesday we got to join Bella on her field trip to the local turtle creek nature walk. It was perfect because normally we can't go to much public outings for fear of Sam getting germs etc..but this was outdoors and he got to just stroll along and enjoy the sights. I had to snap a picture of him before we left for the trip because he was looking tooo cute in little man clothes. Who said boys are not fun to dress?? Wish Jason would let have more input in his attire..I think I have decent taste!

Bella loved having her mom and brother along for the day. None of it would have been possible without the help of my good friend Jen who kept Sofia and took her to gymnastics with her daughter and out grocery shopping. What a gift! I am blessed by good friends. I hope she will let me return the favor..the many favors.

I also had a chance to attend a baby shower for a friend I had not seen through her entire pregnancy. It was nice to have time away for an hour or two. She was the picture of a beautiful, expecting young mother. Seeing how excited and fresh she was made me happy. I feel like I lost alot of that in this pregnancy towards the end when things were so concerning and I could not shake my worries regardless of how many times the Dr would tell me he looked just fine. I was nothing like her at that point. The anticipation was tied more to fear than joy. I am certain now that I knew we had challenges ahead..on some kind of spiritual level. But the funny thing is I do have tons of Joy now although it may be the kind of joy that comes through teary moments and feeling like savoring every smile he gives me.. I am trying to set aside fear and embrace the joy. It is really a decision to do so. 

This morning I did not embrace inner joy though to be honest..I was rushed and stressed out about getting to pensacola for our cardio appt and dropping off the girls and getting directions and packing all sam's equipment, the meds, my pump, his milk, the diaper bag etc etc.. when I pulled into reverse and side swiped Jason's car..... ahhh.. just what we needed.. two messed up vehicles. First I cried.. then I vented to a friend and then I finally found my humor! It could be worse. It could always be worse! So now I am awaiting final word on how things will go for Sam's surgery but in the meantime I am going to keep working on staying positive and focusing on the joy.  

Sunday, October 3, 2010

4 seconds..

The last time I wrote on the blog Sam was still in Sacred Heart and we were watching Samuel recover from respiratory distress, tweaking the levels of a new medicine that was making an impact on his bradycardia, and awaiting a muscle biopsy to determine whether Sam's problems stem from some form of mitochondrial disorder or myopathy/ neuropathy. The question of a neuromuscular disorder has long been there for almost 5 of his 6 months and as much as we hate to imagine the scarey outcomes of such a disorder, it would be a difinitive answer.. and maybe it would help me to put away the anger I have had over how things went during and directly after Sam's delivery. I know God would have me look forward and not back but it is hard to move forward without knowing what is shaping our future. If it is some form of disease or disorder there might be treatments or ways to improve quality of life for him. Or.. there may not be. It could get worse. I understand that and in some ways I am moving into the "acceptance" phase of grief. I am just looking for answers and direction. I feel completely wishy washy. I feel unsure of everything. I go to God in prayer looking for the purpose of all best to help our beautiful son. My children are very much a part of God's plan for me.. I just wish Sam came with a set of instructions.

Over that weekend following the blog, Sam improved on his Bradycardia events. He would have big dips from time to time but always seemed to recover.. "no pauses" as the cardiologist put it. Our cardiologist said Monday that we could probably avoid the pacemaker surgery if he continued to do ok on the medicine which has some tough side effects of drying out all his secretion but also works because of the lowering the tone of Sam's vagal nerve which seems hypersensitive and it raises the general heart rate. The vagal nerve when stimulated then effects the autonomic process of the heart by lowering the heart rate. The heart is too busy with beating to manage it's own timing.. so it appears our problem is with these outside forces controling the heart rate. The scarey part is the fact that Sam's heart has dipped to dangerously low rates and even has had short pauses..the last one lasting 4 seconds. This is called Asystole. Seems like such a short span of time but yet for his heart is way too long. 4 seconds could steal his life. I think about all that can change in 4 seconds. The period between when my dad's car left the road and slammed into a tree causing major injuries resulting in his death 15 years ago probably took less than 4 seconds. I walked across the stage accepting  my degree from UF in a room of thousands of others in less than 4 seconds. How easily we take the seconds of our lives for granted.

The reason I had not written in awhile is that I was processing some frustrating turn of events that took place on tuesday of this week. We had seen the surgeon's nurse on Monday and she indicated it would just be a day or two before his muscle biopsy surgery, a relatively simple procedure that does require general anesthesia. We had some issues with Sam's congestion at night and he continued to require suctioning every few hours. He was otherwise fine and other than waiting on the biopsy we had been trained to do the suctioning with a machine at home. Then on Tuesday all the pediatricians seems frustrated that we still had yet to have a biopsy on the schedule. They inquired further and found out it was now scheduled but not for over a month. WHAT?? They were also suprised. After at first being told the surgeons were just booked solid..they finally found out from the surgeon directly that he just did not feel confident about operating on Sam with his history of Bradycardia and asystole. He no longer has a pediatric anesthesiologist (the surgeon is actually leaving as well ) and did not want a repeat situation as we had the week prior when he was put under for the MRI. We felt broadsided.

Why did the surgeon not come and tell us himself? Why did they wait so long to make this decision? Well getting mad was not going to help anything so we asked the pediatrician what was the next step and the attending said.."If this was my child I would get it done right away somewhere else." But when I asked where he felt we should go..he was wishy washy and basically said well you have gone to Shands in the past, you might go back there. Hmmm..left me with alot to think about. The physicians were incredibly capable at Shands although not coming up with all the answers but most importantly when they had the chance to do the biopsy 4 months ago, they did not do it. He was already going to be under anesthesia and they opted not to do it. The neurologist there was the only physician who seemed to dismiss Sam's symptoms and now I am supposed to place him in his hands..hmmm.

Then the cardiologist returned before we were discharged and seemed to change directions on the view about the pacemaker saying we may need it as a "life jacket". He said the meds might not work longterm. He was and is currently still awaiting further direction from the pediatric cardio electro physiologist at Shands Jax. He would have us go to him for the pacemaker and do biopsy there at same time if that is what is recommended.. I really like our cardiologist so I want to follow his plans but I feel like we need second opinions so we spent the next 3 days on the phone, internet and discussing possible courses of action. We really need someone who is our team captain, steering the ship and unfortunately I don't think our pediatrician is quite up to that role. She told me wednesday that she could not get info on us while we were in Sacred Heart and that she had seen the "pauses" on our moniters results before but not a cardiologist, did not know what to make of it. I love our pediatrician but they don't deal with complex cases. How do you find someone in a small town who can help manage the medical needs of a little boy like ours? I pray about it and I am doing my best to advocate for him myself but I find myself questioning myself too much. Why don't I just do what is in my gut..that is to drive Sam to any one of the best hospitals in the country and start entirely fresh? We have looked at Boston Childrens, Philidelphia Childrens, Texas Childrens and a number of hospitals that specialize in mitochondrial disorders (although we don't know that he even has one of those yet.).  Is that the way to go? For now, I am planning to pose all these questions of the neurologist we are seeing tomorrow afternoon. I spoke on the phone to a friend of my aunt who is a cardiologist in Oakland, Calif. We will probably send here more detailed data on Sam as well for an opinion.

In the meantime, Sam has had a pretty decent couple days. He had 2 bradys his first night home but only one since then and he got out in the sunshine on two occasions for Bella's soccer practice and the first game. Yesterday he awoke from a nap with bad color and difficulty breathing that resolved after some suctioning and O2 by cannula. For that reason we are hanging home today.. keep things uneventful and allowing him time to rest. The best part of the week has been that he cut his first tooth and the second is on the way. He is such a sweet heart and has loved being close to his sisters again. I think the hospital is depressing for him. I just wish I had half a brain during the day to process everything and still stay upbeat for everyone. I end up just focusing entirely on him or the research and meanwhile the house falls apart in phases around me. I can't think straight some days to keep the "normal" stuff going.. Jason is far better at the juggling. There was some discussion in the hospital about the possiblity of a night nurse or aid at home but the doctor's said it can be tough getting it covered by insurance..I hate to have to add that fight to the list but with some help I think I would at least sleep enough to be clear minded by day. For now it just seems like I am making a long chain of disconnected movements in one long sleepless night. I am so thankful for the prayers and well wishes of friends. A bible study group at my church delivered a basket of goodies and warm prayers and I can't quite express how much it meant to us. We feel hugged and loved. We feel your prayers. We are thankful for so many blessings and if I seem tense or frustrated it is not because our community has not supported us or lifted us up. The visits of our friends and pastor in the hospital and the help of dear friends at home have made this hard time much easier and less lonely. I know God makes a window when doors seem locked shut and in many ways he has already delivered us. I just need to keep my focus on the seconds and be thankful for them.