Friday, April 1, 2011
If you saw my facebook post this week, I had this sweet moment with Bella. She came to me in our backyard. She said, "This is for you, mom. It's us, your 3 hearts!" It was one of those squeeze em tight and hope they stay like that moments.
We had a big prayer answered today. Private nursing at home. Let me rephrase that to say.. full time private nursing at home (for however it lasts) 11 hr days and 8 hr nights. Finally. Finally a chance at accomplishing some normal activities and focusing on more than all the medical stuff surrounding Sammy's daily needs and intense demands during crisis periods. I love nurturing him and being there for all his extensive needs, even during the hard times, but frankly I am so exhausted sometimes and there are other parts of our life that have disappeared or require more attention.
What will the nursing free me to do? Hmm..
1. Work - contribute financially or be able to support Jason's business.
2. Get involved - with my girls on a closer/ less distracted level.
3. Sleep - what would 8 hours straight feel like?? shoot - 4 hours on my bed already feels like heaven over a pullout hospital couch for any period.
4. Turn it all off - Not always have to be "ON" or locked and loaded as we put it..ready for any crisis that might take place unexpectedly..because if Sam is in any way predictable it is that he is always unpredictable in falling off the metabolic cliff of sorts.
5. Get Organized - collect myself a bit. I feel like all the interruptions of routine that have taken place in life have left me scattered and cluttered. I am doing better at my priority resolutions..but need to do more.
6. Reconnect - with my husband. Maybe actually have date nights in our future and not have to beg, borrow or steal to convince family that he won't die on them or require resuscitation measures in the 2 hours we are away. They might be able to only take the girls and he would have the nurse.
7. Enjoy Outdoors - Not worrying if we will pay for it after a taxing stroll round our street earns us a trip to our local ER with basically mutisystem breakdown over a little heat.
Most of all..
8. Enjoy Samuel for just who he is..not a medically needy, chronicly complex little science experiment but our little boy, who needs carfree bonding time with us when we can snuggle up not overly exhausted from the methodical measuring of medications, setting of pumps and responding to alarms - big and small. Not feeling the negative effects of constant periods of racing adrenaline in your bloodstream while intervening during crisis. It is toxic to our health, but also to how we interact with him. He is not a priceless glass vase. It would help if we could sometimes forget the medical..just be mom and dad. That is why when we had nursing before for only those 2 short weeks (60 hours) prior to and following the last hospitalization we had this tease of an experience and such a short glimpse at what life could look like if we had some relief. I hope this time will be more longterm but for now I am just sending up my thanks to God for answering this prayer. I spent the day filling out paperwork and meeting one of the nurses who seems just wonderful.
I am also sending up prayers for a friend who is going through a tough time emotionally right now while at home with her kids with her spouse away in rehab for personal concerns. I know she has had to be a rock for them all for so long and is at a real low point this week. I hope God sends an angel to hold her up and show her all that is right in her world. Her sweet children and supportive family and friends. I hope God whispers in her ear that she is not alone and has a multitude of soldiers in his ranks standing by to help her through this. If I have listened to anything God has shared with me in those quiet moments of prayer it has been that none of us are alone on life's journey and that he may not be able to right the road you are on or make it perfectly easy to walk on.. but he will make sure that the road ends where it should.. eventually.
To recap the last week, there were lots of highs and lows for all of us. After Sam's ER trip and shots of yet another antibiotic for the ear infections that would not respond to tons of antibiotics and seemed to bring on the rest of his issues, we had a seemingly full recovery of the infection with shots of rocefin directly to the bloodstream!! YAY! However, we did have some concerning news in that Sam continues to lose weight even having returned to his full diet and caloric levels. He gets roughly 700-800 calories a day of formula in his GJ tube in the course of one day that is fed at a slow rate of about 45-55 ccs of beefed up 24/cal/oz formula for about 19-20 hours a day. He now ways a little over 15 lbs and was 8 lbs at birth. He weighs less now than he weighed in August of last year. He is 26 inches long and was 19 at birth. He is proportional looking in appearance (no ribs showing or anything) but is going down in clothes and diapers a bit even having only lost about 1 lb. He is not on the growth chart by any measure at over 1 year of age now but we threw that out awhile back. The perplexing part is that kids do usually slow in weight gain at this age but usually because they are running or cruising around burning more fat and building more muscle mass. Sam spends most of his life asleep and laying down.
It is due to the weight loss and stagnant gains that his Dr called for addition of a new supplement to his food. It is called MCT oil and is a medium chain triglyceride, fancy name for a type of fat that is more easily digested by the body...or so they say. Apparently Body Builders are big users of this particular product. He is his father's son.. The idea being that if for some reason on a cellular basis, Sammy is burning through an insane amount of calories and needs more, this might infuse him with more calories that don't increase his volume of intake. Basically the intestines can't take much higher rate of food or more volume so this is more concentrated.
(Reader Beware: poop-talk coming down the pipe)
However... MCT oil has been known to cause diarhea and mal-absorbtion syndrome since it can coat the intestinal walls and make them slick and less likely to absorb nutrients, which if you follow my ramblings, you know is something I already worry is taking place on another level. I have seen how well he absorbs things put right into blood stream (TPN and meds etc.) and wow what a quick responce we see. I worry about making a bad GI even more complicated. Sam rarely has formed poops, rarely even poops period but when he does they tend to be loose. SO.. when his Drs say he is often constipated I have to correct them and say that it seems more dysmotility than actually a blockage or back up situation requiring more fiber/ fluids. SO..we had big decisions about trying this new solution and made the call to proceed. Well.. we started it tonight and he acted in pain minutes after I put it in his tummy (left me wondering if it should have gone direct in intestines like the food?). He did finally settle down and go to sleep. Hope it puts some meat on my little man. We go Tuesday for a followup on this to check weight and GI status. On another note..remind me not to run into people in the waiting room there and even slightly try to explain answers about his status or prognosis...end up feeling like crawling in a cave.
ON a more exciting note.. Sam has made some PT and OT progress. He tried new moves with reaching across midline for toys and reaching out of his arms reach to maneuver his body to get where he could reach something he desperately ached to touch. He is showing good endurance during his therapy sessions, but then is still tanked most of the rest of his day. The biggest step forward though was this morning, shortly before we heard the nursing news as the therapist placed him in a doggie type postion on knees and hands. Usually he would kinda be a spaghetti noodle and not work to tighten up and hold himself. WELL NOT TODAY! He actually held up his body carriage himself and looked around too! This from a boy who hardly can pull upper body off the mat during tummy time! I was amazed! It is crazy to me that he might just figure out how to crawl before he figures out how to get into crawling or sitting postion. I, of course, grabbed the trusty camera and here is the exhilarating moment of accomplishment.
What you can't see is his therapist and I squealing in delight at this show of strength and perseverance. He was working soo hard and putting every bit of himself into this, which is also hard to capture in a quick photo snap. It is these moments that I wish I could sign, seal and deliver to every nay - sayer I have met along the way who discouraged the hope for our little fighter's future. Love to see him brave new territory.
Life sure is a CIRCUS! (Ness - thinking of you and our circus year!)
As for the girls, this last week was spring break and they had some great times, even amidst Sam's recovery period. We had a few very memorable playdates and the inaugural swim, kicking off the warm spring and summer seasons. Sofia returned to school and had a circus program intended for dad's to enjoy. She was a pretty cute little acrobat in my most biased opinion! I am going through a can't-get-enough-of-her-curls phase! I would easily trade those in though for less drama and driving me mad moments! Ha Ha. Thank you Lord for forgiving my less than graceful moments hollering at her over unbuckling her seat belt 50 times on the way to the grocery store.
As a last call, I am finishing up the collection of orders for T shirts to be worn to support Kaps 4 Kids on April 27th raising funds to "share a night" for a family at our local Ronald McDonald House. This is the home for families of seriously ill kids in the hospital. It was our home away from home during some hard times at 5 different locations. The house is fully independent and not run or financed by McDonalds, contrary to popular belief, so these funds make it possible to reach and touch many families like ours. The shirts or hat or visors are $12 and if you get a hat and shirt it is only $20. That one shirt means a shower to another mom whose baby is in a NICU on life support or a place to pray for a dad whose child is undergoing chemo or surgery. For us.. it was a place to reconnect and share a meal as a family on weekends when my girls could come. Call me if you want to help support this worthy cause. Local businesses support it by letting their employees wear the shirts as a casual day on the 27th of April and there will be a pre-party event at Scullys on the Bayou in Ft Walton Beach on the 20th to celebrate your support. I do need to drop off the list by 2 tomorrow (april 1) and funds by the 7th. You can email me at email@example.com if interested. Thank you for all those supporting this event.
God Bless and I can't say how thankful we are for the prayers that have paved the way to good things in our wake this week.