Sam took a bad turn last night and is very sick again. It was a shock as he was great yesterday morning and even saw the Dr when we took the girls for flu shots. I should have known when he sounded kinda junky and was having more and more bradys that we were on a downward spiral. So..we were up all night as he was not breathing well, turning blue in spells and struggling and then also not tolerating his feeds. We are exhausted and maybe a little slap happy at this point. I must have prepped for the ER 10 times but Jason is convinced that there is NO point in going to our local ER with Sam.. and I hate the idea of another ICU stint..can't we just help him get past this here at home.. Having a nurse here would be GOLDEN. Our Dr said to go ahead and bring in the nurse for whatever the insurance would cover which I imagine will be like 1 week and so I called them this morning..the woman must have been thinking.. "why is this woman calling on a sunday?" Well.. because I am over tired, can't remember the day of the week and just plain desperate for aid!
Sam had a fever but I think I have it under control and he is resting for the first time since nap yesterday..Jason has crashed too and I am staring around in horror at all that the girls did to pull the house apart last night and this morning in our distraction of dealing with Sammy.. well no biggie..I had more decorating to finish today anyway and was bound to get messier before it all came together. The problem is when Sam is sick all you can do is hold him and try to make him comfortable as he gasps and pulls at every breath. He is so miserable. Getting emotional is not going to turn it around so we will focus on positive Christmas feelings and pray for stronger days.
Going into this magical time of Christmas and all the changes of transforming our home over this past week.. I have decided I am redecorating my mind and spirit as well... OUT with Scrooge and all the baggage and negativity and self doubt and worrying and fear....and IN with the Christmas Spirit and laughing over the things we just can't control. If I don't learn to laugh about it and accept it and trust God every day..(and not just when it is convenient).. then I really will go bonkers.. so with that new frame of mind I am going to find my inner peace and joy and shut the door on the rest ..at whatever cost!!!
"On the 1st Day of Christmas my true love came to me..." and said:
BIG changes are underway.. Jason made a decision to branch off from his partnership at the firm and fly solo. Overhead was way too high and with all Sam's medical bills and so far no luck at securing the nursing aid that would free me up more to aid in finances..we have to be able to cut corners and make our own budget decisions. He is planning to stay in the same location and most everything will be the same except now we can control the figures a bit more. It was a scary proclamation for me to swallow at first because I feared loosing our insurance in the transition but I know it will all work out. Praying our new insurance does not go up much higher than the $1600 we are already paying each month.. but I am sure it will all work out. This year has humbled us a bit after being so stable at a young age only to realize one event can totally rock your world.. but we are very joyful and thankful for our blessings.. so any changes don't have to be scary.. it is all just an adventure right?
The reason the 12 days of Christmas song came to mind above was I read a blog recently that really had me in tears relating with this other mom as she blogs each of the days of Christmas and did a 12 days list of their 12 specialists who work with their daughter who has mito disease (the disease we are awaiting our results on regarding Sammy).. Their story has seemed eerily similar to ours in many ways except they are farther along in the journey and seemingly more adjusted. I am inspired by her humor about life and I found myself laughing over what I would have thought if you had told me last year what was about to happen or even shown me a peak at her world... boy was I clueless!! SO here are my 12 days of Christmas for all that craziness that the last 8 months have brought anew into our lives after the traumatic arrival of our beautiful son.. the thing is that it also brought more love and closeness in our family than ever before.
"On the first day..."
1 G tube button, 2 invasive surgeries (gtube with fundoplication and the muscle biopsy), 3 ambulance trips, 4 wonderful therapists (speech, physical, developmental, occupational), 5 continuous EEGs, 6 concerning seizures (not caught on EEG), 7 hospitalizations totaling 11 weeks this year, 8 weeks of ron mcd house stays at 4 different houses 9 different medications (caffeine, prevacid, many antibiotics, Coenzyme P5P, Tegretol, Colace, Milk of Mag, Miralax, and Robinol), 10 pieces of medical equipment (heart moniter, feeding pump and bags, 02 compressor, 02 tanks, various size syringes, needles, Mic Key extension kits, nebulizer, handmade pulmo back beater, and the all important breast pump), 11 Various medical tests done in triplicate (Cat scans, MRIs, Sleep study, EKGs, swallow studies, radio nucleid reflux studies, a million X rays, laryngoscopy, bronchoscopy, halter monitering and more blood work than I have ever seen..), 12 different types of Physicians (obgyns, neonatologists, pediatricians, ICU intensivists, neurologists,
pulmonologists, cardiologists, geneticists, Mito specialist/neurologist/ geneticist/ biological scientist = total brainiac, gastroenterologists, anesthesiologists, and general surgeons)...
Fa La La Laa... and that was all just the tip of the iceberg!
Thank you Lord for humor and for only allowing us to see this list in review and not before we needed to know what lie ahead. Lord help our Sam to get well again..and stay well.