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.

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