Sunday, January 30, 2011

When things feel too heavy and I get a little down..Sam turns my world around with his sweet smiles.. these were after his bath last night.

He is PURE silly and makes my heart melt. Momma loves you sweet boy!

Saturday, January 29, 2011

Home from Atlanta

This week has been a blur. Here are the was a big week!

Sunday Night: During the last "medical shift" of the day when I have to prep and load all of Sam's food and meds for the overnight period we had a little problem. He now eats 19 hours a day but meds go in 3 times a day or some just as needed. When I had almost everything in I went to load the last crushed medicine and it got stuck. When it gets blocked up you have to pull back on the syringe and push forward a few times in hopes it will dislodge the block and allow it to flush.

Try as I might I could not get the syringe to budge. A trip to interventional radiology in Pensacola for the 3rd time this month was not in my plan for this busy week. So I called Jason to come give it a try. Mind you, he is rather nervous about administering meds. Jason has more strength in his little finger than I have in my whole body and he sometimes makes me think of Baby Huey. If you recall, that was the book about the huge baby that could unintentionally take out whole forests with the swing of his little rattle. So next thing I know he has barely pushed the syringe in and water is squirting out all over us. He blew a hole in the GJ tube with the pressure. UGGGH!! ..and still the clog did not budge.

It was one of those pure stomp your feet and yell "Dang it!!!" moments. Luckily it did not blow the J channel of his port, just the G side which goes to the stomach where we put meds, not food right now. So his food was able to continue thru the night and I had to plan to go to pensacola the next day.

Monday: worked out in my favor that Bella was leaving a little earlier that morning since she is now officially a......BIG GIRL BUS RIDER!! WOW - What a big step! The bus gets all the kids in our neighborhood at one stop near our church so I still have to drive her there but that is better than a drive across town. I was crying and everything. She acted like it was as big a deal as going to Disney to get on that bus.

She blew me a kiss from the window..and my heart skipped a beat. She is no longer that little baby we held in the crook of our arm. Our first little girl..our first time feeling what life was really all about...She changed our lives and now she is growing so independent. She had this locked on nervous excited smile..clearly quite the big moment for us both!

After that emotional send-off, I loaded up Sam and all his 10,000 pieces of equipment meds and make the tense drive to Pensacola. I sat in a waiting room for hours. During the GJ replacement procedure his BP went way up there and they made us stay for observation for a little while afterwords. The nurse said it was no wonder since they gave him no pain meds while they traced the intestines with a wire placing the thing in there. Talk about feeling crampy and miserable.

While I waited I got a call from Angel Flight saying the weather was not so good for securing a pilot for our next day's long awaited trip to Atlanta to meet with the mito specialist.. so I spent the whole drive home worrying about whether Sam could handle us trying to drive it ourselves. The whole reason for the Angel Flight is that Sam has always shown his true colors (no pun intended) on the second half of long trips back and forth from Gainesville. Well by that night I decided we could not hold off any longer since the info might be important in caring for him now before the next big health crisis. The nurse who had helped before the nursing care was suspended offered to go with us out of the goodness of her heart and I was so thankful. Not only is she a pancreatic cancer survivor but also was a missionary in Africa for 7 years..quite a life. She has taught me alot since she drifted out of the clouds to my door step. I just wish we could find a way to keep her.

Tuesday: Long drive through Alabama full of internal tension but thankful not to be alone..pretty scenes and old barns and lots of time to think.

You know me..lots of chatter all the way. I think the nurse kept me talking so I would not focus too much on what they might say to me the next day at the appt. The trip that should have taken 6 hours took us 8 and half because not only did we keep stopping for Sam and to do his meds but we also got lost in Atlanta. It was a dark, rainy night and I was pretty scared but thankfully my good friend talked me through the last leg of it over the phone. Thank you, Jenni.

A warm bed in the Dunwoody Ronald Mcdonald House and a shower made all the difference in loosening up my stiff neck. But..then I could not many worries and questions and concerns. Sam decided to have some Brady episodes and I was up with that all hours of the night. I finally slept and the nurse took over in the early am letting me sleep in..but then that was stressful because I awoke with a start.."OH NO! We can't be late!" What the nurse did not realize in wanting me to rest is how involved a check out from RMH can be in a rush. We made it out though and with a few moments to spare.

Wednesday: We had our long awaited appt with Dr. S, the mito specialist. I had so many questions. They had alot of info to share and overall I was glad they did not leave me completely in gloom and doom. They had some positive plans and talked alot about how crucial it would be that Sam avoid any stress. We talked about ports, vaccines, TPN and meds and his weight which has somewhat stagnated for the last 4 months. They said we need to look at him like he was a micropreemie even though he was full term 8 lbs. We did not discuss much about some of the decisions made about his status in utero or how he was handled post birth which have long concerned us about whether some aspects of his status could have been avoided. I think they still don't fully understand how these decisions may have effected him and we may never fully know.

They described the little disorganized unstable energy factory in each of his cells. They said it is like a team huddle for a football game. His team is not all tight and close together following the coaches play instructions. One guy is on his cell is counting clouds and another is chatting with a friend. So..the instructions get lost and the play is disorganized. I love visuals like this. They don't know if his issues are a secondary or primary problem and they have not located a genetic cause. Mitochondria can be damaged through a chain of events or as a result of spontaneous mutation or following other conditions. They can be inherited from either exclusively mom (now known to be more rare) or from both mom and dad or not inherited at all. He was negative for all the genes they have mapped for mitochondrial disease. There is sooo much they are still trying to understand though about this disease. They do know what it means for him on a very fundamental level. His organs need optimized energy production to function well and as of right now we have these periods where on many levels he is doing just ok and then some areas always seem a bit over taxed but all it takes is a little cold or fever or being overtired or hot or just in general not up on his baseline and he is thrown over the edge which leads to systematic shut down. So it is our job to work on finding the healthy middle for our delicate little man.

Each time he is put through a major crash as I call it..he takes steps backward and has to work harder to regain them. He is in prime time for growth and development which requires alot of energy so this is an incredibly difficult time for mito kids. I asked if they expected him to make it through it and they said the chances of death in kids during this phase are less than we think. That is encouraging but as there have been many times I feel we shaved it close to that cliff I still can't completely let it out of my mind. It is always there..the elephant in the room. But God needs us to turn our focus away from worry and be the best advocates for our son's growth. He is such a fighter.

One interesting comparison that they made was to heat stroke that kills people in the summer. In those circumstances of extreme heat and dehydration, even otherwise healthy people can die from systematic organ failure. This is considered death by acute mitochondrial failure. This can happen in situations where people have top working mitochondria. With Sam having unstable dysfunctioning mitochondria, his body does not require the stress to involve extreme temperatures.His body reacts similarly to less extreme forces. It was an informative meeting and there are alot of things we can do to optimize his day to day. One of the biggest discussions was about coordination of care among all his many specialists. They want to be much more involved than I had thought but they will not coordinate everything from Atlanta. We will have to travel there every 3 months or so and call at every dip along the way. I get the impression we are part of all their research. This guy has only written 88 medical journals and has 6 drugs before the FDA for approval. They talked with me about the importance that our pediatrician coordinate his care and not leave us flandering to do it for oursleves (which is somewhat how things seem to go around here). This is common among mito kids and having a central team leader is crucial.. they don't have to be experts on mitochondrial disease but have to be willing to learn. I am hoping our wonderful pediatricians are like minded in this plan.

Late Wednesday: Long drive home and only one stop for feeling lost (thankful for the many people who came to my aid as I stood looking confused holding my map in the montgomery mcds)..and only one stop for Sam having an episode towards the end. A happy homecoming with the girls and Jason. I am soooo thankful that Sam made the trip rather uneventfully. I am also most thankful for my mother who not only has always come over and helped with the girls when I am away with Sam, but also has made it her personal daily mission since our last hospitalization to help me get the house back in shape and organized. I am sometimes in a full stressy mode and can't string together one task around here to the next. She swoops in and has been pulling together my loose ends. You never saw someone so excited to tackle cleaning my laudry room. I am blessed by her aid.

Thursday: Bella was super excited to find out she would be star of the week in her kindergarten class next week and so we worked on her "all about me" poster shown below. She gets to bring her favorite snack and do a show and tell and I am hoping to find a way to go in and read her favorite book to the class.

I am always very thankful for the many kind cards that come with prayer wishes and the love of many friends. Two came thursday afternoon during a lower moment and there are no words to say how much they meant in building me back up again.

Friday: Sofie had pajama day at school and had a great time eating breakfast on her sleeping bag. It is good to see them smiling over these fun experiences.

Prayers on my mind: My dear friend's father and their family as they make difficult health decisions. Financial and insurance concerns relating to all Sam's medical weighing heavy right now. Praying about an upcoming transition for my sister with a move to Belgium ahead and a husband deployed for the past year. Prayers of thanks in that they were able to sell their current home. Praying for a family that lost a pregnancy of twins right before an overseas deployment recently. Prayers of hope for our little boy that he not only overcome his challenges and enjoy a period without struggle to be able to focus on making strides in his growth but also thanks that he continues to show us everyday the power of God's love and the promises He has made for us all.

Sunday, January 23, 2011


Everyday is filled with choices.. little unimportant ones like what everyone needs to wear that day or what to make for dinner..but most recently many of our days have included more serious life or death choices. I am getting better at those. Then there are parenting choices and marital choices and just plain personal choices about how we handle all the other choices..some of these are life-changing, soul-shaping choices.

The picture below is at the conclusion of Sam's bath after I attempted to bathe him with his feeding pump connected by his tubes and the IV pole dragged in the bathroom while holding his weak little floppy body in one hand and fighting his other hands away from playing with the exposed feeding tube. I found myself calling for Jason's aid to hang on to my slippery little son and asking myself, "Why was I doing this the hard way?"

You had to be was a priceless bad choice costing me more time than it saved! I finally got him disconnected from the feeding, narrowly avoiding Sam yanking the tube out which would have required another trip to the hospital for another procedure. After all that, the bath I thought would make him feel better really just made him fully irritated. All that struggle.. because I was behind on everything and thought I could just wedge in two things at one time. Jeez.

I have long struggled (even before Sam came on the scene) with the issue of over scheduling myself or trying to jam in too many things at it Busy Momma Syndrome! I think it is actually more prevalent than realized by my generation. We think we are superwomen, climbing tall buildings in a single bound! Whomever coined the term "Moms CAN have it all" was obviously not a mother for very long. I know we are told we can do ALL things through Christ..but I don't think that means all things we selfishly value in the year 2010.

Did Jesus know there would be this whole inner struggle of the stay at home mom vs. working mom? Did he see the age of computers and facebook and the pressure to have a brilliant child who reads before the age of 3? Did he know moms would taxi their kids all over town just to make sure they had lots of new experiences. Surely he did not imagine the material objects that would fill this world and try to steal our core values.. or maybe he did. He knew we would be lured by the idea of "having it all" he hoped to guide us in figuring out what actually really matters and how to be strong through the stuff we have no control over. Anyways... I am no longer hung up on the lure to have it all..and frankly I don't need to go back to being "hurried" by unimportant busyness that traps so many women of my generation. I am crazy insane busy enough surviving the stuff that has to be done and the rest is gonna go.

So laying in bed last night I made this one decision on something that I kept putting off. I had too many other things crammed in my head and that one was put to the back but actually was more important. Maybe if I stop letting the junk cloud my choices and fill my head I will make the right choices on the stuff that actually matters. The road ahead is not easy to always see right now.. but I am feeling more confident that whatever lies ahead we will weather it fine one choice at a time.

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

Robert Frost

Thursday, January 20, 2011

Flying Solo Again..

Last night was an incredibly long night. I don't think I slept more than 2 hours as Sam had drastically up and down heart rates from 140 down to the high 50s (far too low for babies) all night long, setting off his alarms and basically making me a nervous wreck. Luckily his O2 sats were pretty good because as he would dive to dangerous HR levels, he also climbed back up fairly fast. I did not note any color changes which usually come with HRs in the 50s if it is prolonged. However at any moment I know the risk of cardiac arrest looms over him.. in moments like that I find myself requestioning the need for the pacemaker.. but it is a rare activity while on his meds and yet it is sooo strange to sit there watching it happening over and over..dowwwn and popping back up...doooowwn and popping back up. I hooked up the pulsox and not just the HR moniter and that gave me a little more peace of mind that I might catch a dangerous desat. I am always worrying the down won't pop back up as has happened on those scarey occasions in the past. So I slept in these tiny increments jumping every few minutes at the alarms. By morning I was so conditioned to them that I did not even race to the crib anymore unless the beeping was sustained more than the few beeps. That is a horrible feeling to be so tired you think to yourself..this is just another quick drop I won't go until it hesitates too long...but what is too long? Why does our parenting skill have to include a plan for how long a low HR should be allowed to hover when before at night all we worried about with our girls were fevers and bedwetting?

His early morning meds..

After morning meds (which I pushed a little early) he seemed to rally and I began to question whether we might have not given the full dose before bed..when you are giving 7-10 meds every few hours it is not unusual to worry about this stuff. I can't put into words how involved his medication regime is other than to say his nurse was here those precious few days and hardly did anything other than prepping meds (some are crushed, others are drawn up by needle and others have to be dissolved) and then coupled with the administering of his 18 hour feeds which have to be constantly remixed as they are a special formula that can't be just made once and put in for all day use, I don't think she sat down once. It is a big job.

I thought back and remembered specifically pulling up the right amount last night and so then I started questioning whether he is outgrowing the dose for therapeutic levels this a sign he is getting sick which is why he has bradyed more in the past. In the past day or so I have gotten sick myself and what I thought started as just sinus issues has developed into aches and yucky weak feeling (probably exacerbated by no sleep). I am just praying Sam does not get this bug whatever it is. I am also praying for Bella's little buddy who is fighting a big bug today. Seems like alot of kiddos are pretty sick. He is running 103 fever, bless his heart, and I hope he rallys soon. We gave him a ride home yesterday and as we had just found out we lost the nursing, Sam was in the vehicle in close quarters. UGHH. Praying he does not catch what all these kids in the schools seem to be fighting. At least the girls have been doing rather well.

The girls got an art project in after school while I busied myself with Samo and I am learning they are far less likely to have "moments" if they are kept on task in some form of activity..

And.. a walk and some fresh air on the golf course was good for our goals of better physical health around here... (I do hope that walk was not what led to the night of a million beeps).

SO..I can't wait to crash tonight. The worst of yesterday was the news of the nursing being suspended till we get some kind of billing arrangement worked out..we still have no new insurance confirmed and even when we do have it, we will have already exhausted in the last two weeks the annual limits. So..that is when we would need to start fighting for full time nursing but without a new policy we have no one to fight for it with... A solution is out there somewhere.. somehow.

My Precious Baby Boy..

One good thing did happen in Sam's therapy. He is able to hold a prop sit when positioned on towels in an empty hamper basket..oh how cute he is grinning about his accomplishment! He does not hold it for long but he is working on it. His physical therapist was concerned that his endurance seeming to be getting worse as she could only work him for shorter periods lately but we feel this is transitionary from day to day. If that could improve, he would make huge strides..well I guess that is really at the heart of it all. If he had the ability to effectively make energy, he could do anything. Dysfunction on some cellular level is just holding him back.. we don't have genetic origens on this and I think personally that the cellular dysfunction was caused by a chain of events brought on by prolonged stress inutero but until we understand his situation more fully we just have to pray for optimized energy or "en-g" as Sofie referred to it with Jason last night. She said he needed his sleep so he would have his "en-g" for the next day. I intend to post a link to the united mitochondrial disease foundation website to the sidebar area when I can figure out how, so those of you who follow my ramblings and have never heard of Mitochondrial Disease can read up on the details. Don't let yourself read too far into the scarey online stories. We are going to be the ones that defy the odds and overcome the hurdles. He has fully proven his stealth fighter status with me. So now I need some sleep so we can have a better day tomorrow. :)

Wednesday, January 19, 2011

One Day At A Time

I have not written in over a week as it has been a busy week.. trying to get life back into shape and pull some order to the chaos of how we ended 2010. I am well on my way to making some much needed changes.

Sofie runs hot and cold lately with her daily moods. She has been a big helper for me with her little brother.

This is Bella last week on crazy hair day when they got to do up their hair fun and dress a little crazy. Being a little HOT PINK for the day was a big hit with Bella!

We had some bumps along the way this week with Sam's new GJ tube. The first was last Tuesday night when I handed Sam over to Jason's arms and realized his GJ tube had popped out in the transfer. This is such a mess to have reinserted as it has to be done under floroscopy x ray to make sure it is placed properly in the intestines and if it comes out completely he has to be intubated with anesthesia. It did not come out very far though and so we got it back in and headed to the ER for xray and all was fine. Then yesterday it happened again! UGHH!! The nurse had just bathed him and it popped out as she dressed him but this time it came out much farther so we had to head to Sacred Heart and have it replaced by interventional radiology. This can not be happening every week.. I will loose my mind. We had to wait forever and the whole day was gone by the time we got home. Thank you Lord for my good friend and mother who came to the rescue with the girls.

Aftter a full day at the hospital yesterday, I got home and asked Bella how her 100th day party at school went today and she said.."Well, it's dressed me for it on the wrong day. I was out of uniform on the wrong day." UGHH.

Sam is making progress with his therapy and is in general very happy. We are working on getting to the skill of sitting and working with foods he can hold and try to taste on his own as opposed to spoon fed which has not been going well. Eating has been a very difficult area for him since birth on several levels as it requires coordination of breathing and swallowing and as his airway is very floppy and with his low heart rate dives we have to be very careful about exertion and stress. Weighing the risks and benefits of each effort to feed him by mouth (choking and aspiration risks against his need to learn to eat) are what fills my mind each and every day.

The main thing I am praying hard about right now is insurance..gotta have it and am beginning to feel like it will never come together. The agent is working hard for us and leaning on the underwriters for a swift responce but it may come down to Samuel having to go under an expensive gap conversion plan on his own. Either way we need to get something in order soon as all the parties need to bill for everything and I have paid out of pocket for as much as is possible right now. His meds alone in one month are more than most people's mortgage payments and then you add the medical equipment, hospitalizations and constant appts and ER visits. It is overwhelming. I find myself crying at times only to realize this is beyond any normal person's means and I have to laugh and just decide to take it one day at a time.. one bill at a emergency at a shift of prepping meds at a time.. one phone call arranging the meds, appts, equipment and insurance at a time... It is all anyone can do. I am doing my best. He is so deserving of my very best. He thanks me one smile at a warm embrace at a sweet open mouth biting chin kiss at a time.

I found this poem online this morning and thought it was a good one to sign off with today. Tomorrow will be a fresh day for us and I pray for all the rest of you as well. God gives us strength enough for the day we are in.. the moment even. I don't think we are born with everything we need for what lies ahead. He helps us rise to the occasion. He is strong enough for all of it and we just have to trust Him and focus on today.

One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.

One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.

One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.

Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."

Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.

One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.

BY Annie Johnson Flint

Deut. 33:25 ...and as thy days, so shall thy strength be.

2Cor. 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Sunday, January 9, 2011

Planning A New Look For The Blog.. New Outlook On My Life

I learned something today from my daughters.

I had gotten overly frustrated in the morning hours with the girls over how little they heeded our "talk" in the car about how they should act in church that morning. See, recently we have been attending "rock" church aka a contemporary service where you can be a little more lax about the kids getting up and moving around, drawing, chatting during songs etc. We always did the traditional service but changed when we started having to bring Samuel in with his alarms and pumps and such as it would be rather embarassing to have those go off in a quiet sanctuary..well today I had the girls and we left Sam and Dad behind as Jason is now concerned Sam will catch some kind of illness landing us back in the hospital. We were going to the traditional as I needed to stand for the installation of church officers as I am now on the nominating committee. The girls apparently have forgotten how to remain silent during this type of traditional service. It is always a wonderful moment to have your head bowed in prayer and hear your toddler say out loud.."mom, I am really, do you hear me?" ugh..I can't put that feeling properly into words. So that had me a bit flustered and then I had the crazy idea I could get a trip into Publix done real quick while Jason had Samuel. From the start, the girls were fussing at each other and grabbing things off shelves and basically trying to get a rise out of me. SO after a huge lecture, I put them to work cleaning their play room. Jason left for the office and I tried to take a few minutes to de-stress.

That is when Bella came to me and said, "Mom, are you mad at us because we were bad in the store? I don't want you to be mad cause then you go away to the hospital and you're mad at me." I had to just hug her sweet little self and promise that no matter how mad I get over their "moments", I would never want to be away from them and that the hospital trips are something that happens because Samuel gets sick sometimes and needs extra help. What I learned in that moment is that I allow myself to get so exhausted and worn down by all that Sam has going on that I probably don't realize the normal antics of little girls is really just that.. normal and I need to enjoy them and brush it off and love on em. I don't want to be so short and exhausted all the time. I want to enjoy every minute of mothering these 3 sweet kids. I find myself "surviving" motherhood too much lately.. instead of soaking it all up with grace. It is an absolute gift from God to be able to live this life. To touch their lives and make an impact on who they become. Yes, this was a year of some crummy experiences..but it was a year of growth for all of us in sooo many ways and it was a beautiful year in that our Samuel is here and touching our lives. He could have died so many times this year but God got him through it and got us through it too. I hope my kids never question how much we love them or forgive them in the follys of learning from mistakes as they grow.

So with a plan to start 2011 fresh and with a positive outlook, I am going to find some time later in my week to freshen up the look of the blog and my mindset moving forward as well.. I know I keep saying I will get better at this but already I think I have found some peace about Sam's health situation and am working on my total life view. There is only so much I can do in any one direction. I can't work miracles so half my battle to finding peace about everything this year is being content in knowing there are limits and trusting God to pick it up where I am limited. I have faith that for every tough day and experience there is a good one to come ahead. In church today we talked about doing your stay calm and compassionate and stay constructive and challenged (I have challenged down but sometimes I am less than constructive). So with that in mind, I am setting out personal goals for myself and my family in the coming days, weeks and months ahead:
1. Do my best to... encourage better physical and mental health for our family with better diet, exercise and spititual and personal fulfillment. It is not all about work and medical junk and bills etc..find time to cleanse and energize our minds, bodies and spirits. I know personally giving back to others has cleansed my spirit and with all the needs this year of Samuel I might need an opportunity to be filled pouring out some care to someone else even if I can only commit to small acts right now.

2. Do my best to .. ORGANIZE and SIMPLIFY OUR LIFE. This starts tomorrow with a room by room clear out of all the junk that is stealing our joy and causing unnecessary stress. Having spent half this year in hospital rooms with one bag/ change of clothing etc.. I realize we NEED very little in life. PLUS.. it makes me ill to be stressed to the max financially from all this medical financial strain and then have to look at a playroom with plastic toys accumulated over the last 5 years.

3. Do my best to ... figure out the priorities of life and pour myself into them with excitement and more "woe is me." What does not fit into the daily routine has to go... Right now the contendors for our time are: supporting Jason's business, securing Sam's medical needs, and of course building quality life experiences with the kids.

Just 3 little goals.. but I am relly excited to start working on them. Here is to starting fresh in 2011..


Saturday, January 8, 2011

Trip botched by winter weather

After much prep and ado about this trip to Atlanta..I got a call this morning from the pilot to tell me we should not fly in this type of weather..snow and ice is on the way and it would be an extremely rocky flight. Of course the nurse had already left her house an hour away to come here and I hate that she went to trouble of packing etc..such a let down too not to be able to have this appt and gain some real info on what we have needed to understand for the last 9 months. To make things more complicated..this Dr charges $250 for cancellations. I am hoping they make an exception due to the weather situation as they say all of Atlanta will likely close up shop. SO..we will try again when weather is better. Thank you to those who prayed for the safe trip. I have another friend and their family traveling this weekend up to Birmingham and I hope they are safe during this rough weather forecasted for tomorrow. I sure wish the girls got to see some snow though. If it were not supposed to be soo unsafe I would say I wish we could try to make it by car..although that may be a triple risky measure all around. :) Many prayers for all out driving tomorrow on roads that not usually covered in snow and ice.

Here we go into the wild, blue yonder..

Tonight I scanned back on the blog a bit and realized that it is not that exciting or fun to look it is completely full of errors I normally would never make but am just too tired to care to fix. I would love to make it more interesting with flowers and cool fonts and neat links or sidebars or more pictures. I just type away at night when I am so tired but am needing to get it all out of my head so I can rest. My messy run-ons and spelling blunders are so indicative of how easily little stuff gets swallowed up in life's cracks when there are bigger earthquakes in the time to stop and edit. I am so tired and often rushed or plain overwhelmed..sometimes the cup runneth over. So for now I will have to be like Scarlett and put off the fun attention to detail parts of life that just don't work in today's schedule.."after all tomorrow is another day."

Sam and I are leaving in the morning with the nurse on an angel flight bound for Atlanta for a few days. It is a tiny 4 seater (mooney?)with strict weight requirements so Jason can't go as they are barely letting me and the tiny nurse go. Sam just can't take strain of a long drive so this is best option. I am so thankful for this nurse as I am not sure I could do this one alone. She offered to go along out of the kindness of her heart. (God sends us angels..) The nursing company can't pay her as it is across state lines and we can't pay her for conflict contract issues. This is a followup meeting with the mitochondrial disease expert's nurse who will go over in detail the report findings and treatments/ managment plan as well as answering questions etc. I am a little worried about what she will say about what to most kids with his level of dysfunction do well over time or does this have more of a progressive outlook. I need to have a more solid basis for the probable origin of his condition. It is listed as "probable Mitochondrial disease" because not all the testing is complete or indicating clear origins of this disease as a primary or secondary dysfunction. They may never have a clear understanding of what has happened to put his metabolic biorhythems into this malfunctioning state. I need to know how to maximize his health and optimize the cell's production of the energy his body needs. They don't have any info since October on Sam's case so I want to know how the GI down turn plays into all this as it is the most recent change in his condition. I also need to understand options for attempting to get insurance to cover his mitochondrial cocktail of medications..mostly supportive vitamins/ enzymes however they are very very expensive and we just realized the $200 boxes we ordered that we thought would cover 1 month actually only cover 4 days! I lost it a little bit when I made this discovery while reading through the treatment plan. We are praying about it and hopefully we can get insurance to cover it once we have a new policy number..that is the other big prayer..please let the insurance approve and send the policy number..equipement company called me today..With all the equipment Sam requires, we absolutely can not have issues for long on this front.

On a positive note, since receiving all feeds in a more broken down formula placed right into the intestines (skipping the stomach)Sam has had about 1 BM per day and is tolerating feeds well. His system seems to be happier but is it because in general he is at best health or did switching to the GJ help.. don't know. Sammy's mood was also great. He was upbeat and social today and I was able to place him into a seated position although the arms were holding his body like kick stands. At least this held for a few seconds and he seemed to want to stabilize. I tried very hard today to get him to do more with tummy time and try to pull arms up and under to push himself up but that is still a tough task for him. He is making lots of new sounds which it had been weeks and maybe more since he had tried to do that. When he turns a corner to feeling better and having lots of fluid and food in his system, he makes more progress. I have to be patient and give him time. I know he will get to each of those milestones as his body allows him the strength. Tomorrow will be a big day for him so I am glad he is resting easy tonight. Send up a prayer if you read this before our flight at noon tomorrow and the appt at 10 am on Monday...need an easy flight and a productive optimistic meeting. Thank you to all of those praying for Samuel and our family.. this may be a valley in the topography of life but we are moving along and looking for hills ahead. :)

Wednesday, January 5, 2011

Do we need to keep him on a charger..

There is this silly rendition of the Beatles song that the girls love to sing in the car on our way home. They like to sing it when we round the corner towards our house and will fuss at me till I start them on the tune. It is called Two of Us..and starts out: Two of us sunday driving..(then a bunch of lines we only halfway know) and then there is the chorus:

On our way home
We're on our way home
We're on our way home
We're going hooooome....

This tune has been running through my head all day long. Samuel is in great shape today! Peak performance..back up to baseline.. fully recharged! I sometimes wonder if we could hook him to a recharger of some kind would be be able to keep those batteries running! Seriously.. is the IV fluids with dextrose the key to keeping his charged?

Sam is definitely ready to get back to his sisters. Once home, we just need to keep him healthy and hope we get lucky and make it a little longer this time. 9 hospitalizations in 9 months make me leary of setting any specific goals but I have hope as at least we now have a way to feed him when the tummy shuts down, but I know the intestinal tract itself could be part of our issue and I don't think he is up to baseline due to our new way of tube feeding. I think that the TPN and the fluids and the oxygen and the rest all helped to get him over the hump. But for now I am praising the Lord for this turn of health and am praying for more time to enjoy this state. I now know we will not take ANY down-turn for granted. We WILL head off any and all medical downturns with vigilant care about illness exposure and or germies and or fevers or anything that will stress his little system.. vaccines are still on the table but I am scaredy cat of them right now.

I had another kind visitor today. She was a good friend from High School and I literally have not seen her in like 15 years..did I say sounds strange as it felt like we fell right back into normal like it was 9th grad chem class. whew 15 years or more. Not even family and she treked over here while in town for a meeting. How can I say how much the love of friends and their prayers has meant to our family? She stayed so long with us..I should not have let her stay so long but it was so nice to see her again. Her daughter was diagnosed with a brain tumor at the age of 3 and had a brain surgery to remove it and then 20 months of scarey for their family. What a strong fighter she is and an example to other children of her perseverance and strangth. She is doing well now but I will keep her in our thoughts and prayers too. God sends angels among us I tell show us how strong we really can be if we trust him to give us the tools. Hearing from her experience inspires me. I know Jesus has walked with her family and they seem to have really grown from their experience.

I will leave this post with the story of Hannah and her son, Samuel. This is the story for which we named the son we long anticipated and prayed for. Today I talked with my friend about this and we talked about the two aspects of the story from the Book of 1 Samuel explaining the meaning of Samuel's name. It means "asked of God" or "heard by God" or in some versions "I am God". I chose this name because like Hannah, I had asked God to bless us with a son. I was not like Hannah in that my womb was not closed to having children and had already been twice blessed. I guess I also was not promising to give up this son to the service of the Lord as a priest as she did, although in a way.. we all hope our son's will be God's servants.

Jason and I had long felt our family would be "complete" with a third child..a son, if the Lord felt it was right. It seems selfish to ask for more when we have been blessed with two beautiful and most beloved daughters but like Hannah I felt there was something still missing and i had more love to give. I am sure other moms could relate to that feeling. Hannah's husband said to her, "Don't I mean more to you than 10 sons?" Wow, what a guy thing to say, right?..he just did not understand. She kept her promise to God when he answered her prayer of a baby boy. She called her son Samuel, because I asked the Lord for him. She sent her son to be a priest Under Eli after she had weaned him. He was still very young when he was taken to serve the Lord. I can't imagine the level of this mother's sacrifice but I can imagine the love she had and how grateful she was for the pleasure of being his mother. She went on to have other children.

The other part of this story is that Samuel was considered a prophet because he was directly called by the Lord to serve him and the Lord shined on him for his loyal service. Samuel said, "Here I am, Lord".. and when I read that line I can't help thinking of the lyrics and music to "Here I am, Lord..It is I, Lord... I can hear you calling in the night.. I will go Lord if you need me. I will hold your people in my heart." Samuel not only was an answer to Hannah's prayers but was chosen by the Lord. Samuel served the Lord as his loyal servant. I think our Samuel was chosen too. He was an answer to our prayers and yes, a blessing to our family but his worth and purpose are far greater and will serve the Lord in a much greater way through his life. His sacrifices are not in vain.

1 Samuel 1 (New International Version, ©2010)

1 Samuel 1
The Birth of Samuel
1 There was a certain man from Ramathaim, a Zuphite[a] from the hill country of Ephraim, whose name was Elkanah son of Jeroham, the son of Elihu, the son of Tohu, the son of Zuph, an Ephraimite. 2 He had two wives; one was called Hannah and the other Peninnah. Peninnah had children, but Hannah had none.
3 Year after year this man went up from his town to worship and sacrifice to the LORD Almighty at Shiloh, where Hophni and Phinehas, the two sons of Eli, were priests of the LORD. 4 Whenever the day came for Elkanah to sacrifice, he would give portions of the meat to his wife Peninnah and to all her sons and daughters. 5 But to Hannah he gave a double portion because he loved her, and the LORD had closed her womb. 6 Because the LORD had closed Hannah’s womb, her rival kept provoking her in order to irritate her. 7 This went on year after year. Whenever Hannah went up to the house of the LORD, her rival provoked her till she wept and would not eat. 8 Her husband Elkanah would say to her, “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than ten sons?”

9 Once when they had finished eating and drinking in Shiloh, Hannah stood up. Now Eli the priest was sitting on his chair by the doorpost of the LORD’s house. 10 In her deep anguish Hannah prayed to the LORD, weeping bitterly. 11 And she made a vow, saying, “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life, and no razor will ever be used on his head.”

12 As she kept on praying to the LORD, Eli observed her mouth. 13 Hannah was praying in her heart, and her lips were moving but her voice was not heard. Eli thought she was drunk 14 and said to her, “How long are you going to stay drunk? Put away your wine.”

15 “Not so, my lord,” Hannah replied, “I am a woman who is deeply troubled. I have not been drinking wine or beer; I was pouring out my soul to the LORD. 16 Do not take your servant for a wicked woman; I have been praying here out of my great anguish and grief.”

17 Eli answered, “Go in peace, and may the God of Israel grant you what you have asked of him.”

18 She said, “May your servant find favor in your eyes.” Then she went her way and ate something, and her face was no longer downcast.

19 Early the next morning they arose and worshiped before the LORD and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the LORD remembered her. 20 So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel,[b] saying, “Because I asked the LORD for him.”

Hannah Dedicates Samuel
21 When her husband Elkanah went up with all his family to offer the annual sacrifice to the LORD and to fulfill his vow, 22 Hannah did not go. She said to her husband, “After the boy is weaned, I will take him and present him before the LORD, and he will live there always.”[c]
23 “Do what seems best to you,” her husband Elkanah told her. “Stay here until you have weaned him; only may the LORD make good his[d] word.” So the woman stayed at home and nursed her son until she had weaned him.

24 After he was weaned, she took the boy with her, young as he was, along with a three-year-old bull,[e] an ephah[f] of flour and a skin of wine, and brought him to the house of the LORD at Shiloh. 25 When the bull had been sacrificed, they brought the boy to Eli, 26 and she said to him, “Pardon me, my lord. As surely as you live, I am the woman who stood here beside you praying to the LORD. 27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD.” And he worshiped the LORD there.

Tuesday, January 4, 2011

wowsa.. I was an emotional momma today

I had a bit of a day really.. lots of up and down of emotions. For about 2 hours I was a weepy mess and then started back up for air. It was while sitting in the waiting room for Sam to come out of the OR from his JG tube upgrade procedure that I started to feel.. done in. By far this was one of the simpliest procedures yet.. except that every time they do anything on him they have to put him under General Ansthesia and intubate and it scares me a bit that he won't wake up or will have his more serious episodes or something. I am always alone in the waiting rooms as Jason can never be here due to work etc.. and these things are never scheduled on weekends when there might be some chance of him being with me.

I think I was mostly upset because they had told me he would get to avoid the anesthesia and then we get down there and they way. He had to be fully under as he can't handle the gas and needs the MH precautions and has major problems with the LMA tube. So it had to be the full deal. Anesthesia is always the big issue.. not the surgeries or procedures the fundoplication surgery where they wrapped his tummy around his espophagus.. scarey image but the surgeon said our biggist issues were airway concerns and heart rate and anesthesia. Then after that surgery ended in major major episodes and him being coded several times, and we realized it was the intubation making him far worse, I think I got gun shy of the anesthesia and intubation. So they say he has to have what they call TIVA (total IV anesthesia) due to his issues. He did great though this time and it took about an hour and a half.. nothing compared to the 16 hours I would sit for mom's surgeries in the agony of endless worry.

One procedure at a time is what I keep telling myself but after having to go into such a detailed history for the umpteenth time with the anesthesia and radiology people, I was remembering too much from all we have experienced and then thinking far too much about the future and all of a sudden I was overwhelmed and a blithering mess. Most of the time I think I am pretty good at just focusing on the situation at hand and staying in control of the emotional stuff..Jason is far better at it than I. I try to leave my weak times to when I am in prayer because God understands. I am not sure the others in that waiting room could understand why this woman in the corner who has had like no sleep and looks like she was run over by a truck this week is sitting there tearing up every time she takes a sip of her coffee. In saying my prayers for Sammy, I found some peace and calm and before I knew it they were there to bring me back to see him.

My son is such a little fighter. When I got to his side in recovery, he was purring like a cat and waking up in such a vulnerable way. I love that he vigilantly seeks out my eyes and seems to plead to me in only a language I understand. In a few little nods and blinks, he asks me to hold him unlike any other baby... no arms flinging out or howling mommees..just a locked gaze and coo meant just for me. The nurses always tell me over and over.."He is sooo good. I can't believe he never screams or even crys out." He just purrs and moans softly to me. That is his way. He knows by now that crying out and making a big fit of himself will only steal precious energy. I felt alot better seeing him doing better and the rest of the day has been an improvement except for some tummy aches. He is wanting to go home, as am I.

As for the procedure, they had not only fished around in his insides with a metal wire to thread down the intestines but had also dilated (substitute this nice medical word for stretched out bluntly) his stoma (the hole leading from the outer tummy to the inner wall of his stomach.. why did he have to be put through that pain? Because they did not happen to have his size in stock. His size of gj- tube that is..I was NOT happy about this news. He is a 14 french and they only had an 18 they made a 14 hole fit their 18 tube. I was also NOT happy when I found out this hospital does not carry the nice button version of the GJ tube like his old G tube which was so easy to conceal and "low profile" as it is so named that it does not interfere so much with movement and tummy time etc..The new GJ tube is huge and similar to the first starter G tube we had way back in may for the first 6 weeks. It has a long tube attached that can't be detached and is impossible for putting meds into and is FAR easier for Samuel to play grabbies with which could lead to him pulling it out, requiring a repeat of this OR procedure. It is not like the G tube we had where we can put it back in ourselves.

So for now..Sam is supposed to be sleeping but is instead peacefully blabbering in his crib sweet baby sounds and blowing sweet baby bubbles while I type this and hopefully he is ready to get some shut eye. I a, really hoping we get to go home soon.. hopefully tomorrow.

Missing Home..

Today was Jason's 32nd birthday and I could not be missing him more! Lately he has been carrying around the weight of the world on his shoulders.. trying to be both father and step-in mother to the girls once again. He does so well at both. They were all here this weekend but he and I hardly saw each other between taking turns watching over Sam and the girls. I was so thankful for a spot at the Ron McD house for those couple days because we did share a few meals and the girls got to see us all together except for Samuel.

Samuel pulled his ND tube out once again today shortly after we moved over to the floor from the PICU. This is always an ordeal and x rays have to be done to make sure it is in the right place. This time it was not so they had to do it twice. This child could light up a dark room with all the radiation he has had in his little life.

I was blessed with a few sweet visitors praying for our little man today. I know they probably think I look like I was run over earlier in the day but getting no sleep can do a number on you in here. They were a huge pick-up for my mood and if they are reading I hope they know how thankful I am for their friendship and prayers.

I really am trying hard to stay upbeat and not get bent out of joint over the steps back we seem to be taking. I need to keep rekindling my hope and not get so wrapped up in the future prognosis of things. Sam is doing really well on many levels today and those are the celebrations I have to keep lifting up. He has been very sweet today and was almost laughing as I rolled him in his baby barrito style swaddling (intended to stop the grabbing of the tubes). He had been mad because they put splints on his arms and wrapped him so tight to avoid another tube pulling incident. He found it funny when I added in the whooshing and buzzing sound effects as we rolled and worked on some PT moves.. I think he is just tired of laying in bed with nothing to do. So the restlessness is a good change from the little boy I brought in here gasping for every breath and struggling with GI pain. Dare I hope that after the GJ is placed we might get to leave?

But I am left scared of what taking him home will mean this time as it is no little deal taking him home with the picc line..he is a baby and will eventually get those grabby hands around this line..and with his history of not clotting well I fear him pulling it out and bleeding out or some scarey scenerio. They said we might be able to come back for the mediport to be placed outpatient but I don't know when I want to put him through yet another procedure. I keep thinking about how now the GJ tube will require continuous feeds most all the time instead of the part time or bolus gtube feeds that he gets currently. The intestines can't handle full feeds in short periods. But what I am left wondering is if our tummy was so slow digesting the food , will the intestines be any faster? I am not 100% sure this is going to be a quick fix..for now I have to pray this just buys us more options.

The last part of the day I had an opportunity to speak with the mother of a child with a rare disease known as canavans. It was wonderful to speak with her about how she approached her son's complex medical issues and concerns of insurance and coverage for home nursing. It seems like she had to battle the insurance companies before she finally got the help she needed for him. Her son has defied the odds and is doing well in his twenties when they never thought he would live past the toddler years. She seemed to hold onto to her faith and hope and that is what I fully intend to do for Samuel.

Here is a pic of sofia driving her sister wild..she is always working hard to drive her big sister nuts. mom had her birthday this weekend and she has been away for about a month visiting my sister and her 4 munchkins (while hubby is still deployed) down in Tampa. They had a great Christmas and New Years. I miss her very much. It is difficult since other than the serious fall out of loosing portions of her face to the cancer and then one eye, our biggest hurdle is communication as she is now deaf. She handles this quite well but I hate not being able to call her and and just chat. I am adding some Christmas pics of the girls and home below as I am missing them and home so much..

Saturday, January 1, 2011


Happy New Years.. and Happy Birthday to Nana and Grandpa Bob. We are full of hope for a better year in 2011. I am listening for any directions God wants to whisper in my ear or heart.. I am giving it all up to Him cause I know when I have given all of my earthly skill and am still coming up short.

Friday morning Samuel failed his gastric emptying test, taking over 120 minutes to get 45 mls (less than 2 ozs and 6 ozs is a normal meal amount) from the stomach to the intestines. This is way too long a period so they have decided to bump his food past the stomach to the intestines by ND tube but what will happen there with it is anyone's guess. Getting the tube down was not an easy task as he is rather unable to protect his airway well and freaks out when anything is put in there. So under light sedation they finally got it in only to have him yank it out later today. It is irritating for him to do this as he then has to get another x ray to confirm it is placed properly. SO now it is back in place and he is getting feeds again at a slow rate. I guess we will know soon if GJ is needed to replace his gtube for long term use.

My girls were here for the weekend and so Jason spent most of the time being the one with Sam while I got to spend time with them at the ron mcd house. It was so nice to see them but is also always a bit strained too. The girls can feel our tension, the worry and are usually seeing that we are overly distracted. This opens up time for them to punch buttons and test boundaries. The fussing with each other was driving me up the wall but with girls as close in age as they are, it would probably be happening whether or not their brother was so medically complex and soaking up all the attention for the past year. It also seems to work the other way too..when things are bad with Sammy, they get away with more out of pure distraction and then they start thinking they get their own way and can trad on the rules. So we have a battle of wills and lots of time outs and hugs and I never know what helps most..the hugs or the firm discipline.

They love Sam so much and I am thankful they have never resented him in any way. It makes me want to break down and cry when they ask me: "Mom, why can't we take Sam home today? Why can't the hospital make Sam all better? Why do you and Sam have to leave us?" It hurts BIG time but I know they also are growing from all this mess and are learning about love and how not everyone is like them. I expect they will have immense empathy for the sick and disabled. Right now I just wish they had more of it for each other.:)

I am not sure what the plan is for this week.. I really thought it would just be a few days here and home again but I have no idea why I thought that as he has never had a hospitalization under a week before. He is actually doing alot better on a respiratory level, breathing on his own and at good sat levels other than the rare times his heart takes a nose dive and drags the o2 sats down with it. But none tonight so far..fingers crossed. He enjoyed two rousing readings of Dr Seuss earlier and the nurse tonight from memory recanted her own favorite Dr Seuss. I will say it over and over.. our nurses here are always so loving in their way of caring for our Samuel. Other than rare occasions, we have also always loved his physicians and are blessed by their efforts to find solutions. Unfortunately, we are just learning that his set of issues are not receptive to the usual quick fixes. He likes to do things his own way.