Saturday, May 28, 2011


As we go into Memorial Day weekend and as I am in a more restful state, I am finally blogging about the last week or two. You will have to bare with me if I am all over the place as I have a pina colada at my side.. celebrating the end of a good day. I rarely have a drink (like ever anymore) as we don't get out much so it will probably make me silly. Jason says I have no filter to speak of, showing all my emotions on my face.. a pina colada makes this all the more true.

This week Sam had some bouts with off-balance, illness-like behavior. It is hard to call it an illness since most of his bad days are more about bad gut function and pain, not necessarily brought on by fever or a particular virus. I am so tired of the counting of diapers, analyzing stoole consistency and questioning each next step.. 'more miralax or less?..more colace or less?... stop feeds or switch to pedialyte?.. more motrin? more cuddling? hit the hopsital? and then oh but now he is fine so no..' this sums up the constant weighing of how to keep him comfortable.

The last time I blogged he was having increased episodes of bradycardia amidst GI issues and that continued on through that next week on and off. He had both types of hypoxic looking/ desating bradys..the kind where he just looks like he might drift into never, never land and the ones where he is rigored and locked in a no breathing scarey pose. We have drawn the opinion that this is some kind of hypoxic seizure that is only occurring because his oxygen saturation in the brain has dipped too low for too long. It just happens so fast..from beautiful cheery sweet face to him locked into some kind of nightmare pose and dropping out fast.

One particular instance followed an early steps annual evaluation. There were maybe 6 women in my living room from the various therapies etc.. and then also the rehab equipment guy was here fitting Sam into his new activity chair. The chair is perfect and allows Sam a little more stabilization for getting upright and doing more fine motor rehab and working towards eating orally. Pricey is not even the word.. $3000 fancy high chair.. but it works! They also provided a bath chair which will make bathing a little more organized and safe for him. SO...He was doing fine and having a good morning. We had concluded with goal setting for the year and just as everyone headed out, the nurse took Sam off to his crib for some rest.

It was during this shift that Sam decided to introduce her into what we have grown to call our stiff, rigored bradys. He had another one for me and the occupational therapist this week while working in his chair on wednesday morning. He was not really into the session and all of a sudden he was blue and not breathing. The interesting thing is this time his moniters were not alerting. The levels on the moniter were dropped recently and I am hoping we did not prematurely drop these too low or else I will never feel I can even look away for 5 seconds. The heart rate level is set to alarm below 60 but I have watched his get into the 50s before it is alarming. His normal baby heartrate is 130 and I worry that actually being down at 70 for a prolonged period is still low enough for a symptomatic brady. IN the stress of the moment, we rarely analyze what the numbers are at during the event. We are due a cardiology appt so that will be something to ask. Speaking of appointments we had a neurology appt as well this week. I have little to say on it... always leave emotional and I was not going to let it all get to me right now. We had to get more bloodwork as his medds are getting increased and that was a big effort. His veins are impossible to access.

The girls have been out of school for almost two weeks and they are busy transitioning into a summer routine. The pool and playdates are big favorites right now. They did get to do some boating already, once with family and once with friends. The family trip did not include Sam and I as it was a Saturday and we did not have nursing. We thought it might be a bit too much for him in the heat so Jason and the girls got to spend the day with grandparents, a cousin and some family down from Minnesota. Maybe with a cooling vest (as we were recommended to buy by his Mito Dr) he might do better on this type of outing. Those are not cheap either so it may have to wait for now.

We are so blessed to live in a place with such fun outdoor activities. One of our friends took us and a few friends out on her dad's boat Thursday. The kids played on the beach at crab island for hours, having a picnic and watching the dolphins race the boat. Another friend along for the day had never been out boating and has lived here since 2006. WOW.. I felt guilty not to have introduced her to probably the best part of living on the emerald coast. It was such a great day! None of this would have been possible without the nursing coverage, so for that I am most thankful. I really wanted the girls to have some fun experiences this summer and right now we hope to at least once a week plan a little outing with friends.

This week I attended a change of command ceremony for a new friend who lives in our neighborhood. He was taking over the command of a division of Osprys at Hurlburt AFB. Sitting there, watching the order and honor of the ceremony took me back to my dad's years in the Air Force. With Memorial Day around the corner, it was a nice reminder of all the men and women who serve our country and have given their lives in combat.

The biggest news of the last week has been all the movement Sam is making during floortime and in his crib.. he is all over the place! Mainly rolling and scooting with his arms, but motivated to no end! He may move right on to crawling before he even learns to get into a sit. We are so excited to see this even amidst the bad days of GI pain and Bradys. It was nnice to see that there were still pockets of time where he was smiling and moving around playfully. He wants to get back up on the knees the way he did that one time in therapy... it won't be long from now.

The other big news are the strides Sam is making with his feedings. Up until last week, we had only gotten a few bites here and there and it was a struggle..then it seemed to be getting a little easier with him self feeding foods that dissolve in the mouth like mum mums. Then during dinner tonight.. he discovered grits. In perfect southern tradition, they won this boy's heart! He loves them and was not choking or turning blue. In fact, he was crying out for more! He even allowed some sips of water to help clear his throat. Water sips have been hit or miss in the past as well. I think the new chair is helping in some ways and the increased strength he has been building in his neck with physical therapy.

As for today, we broke normal saturday tradition and just relaxed by the pool. I invited neighbor friends and their kids over to swim all morning, and then we all crashed on the couch for an afternoon siesta. Jason cooked up dinner.. quite a treat! Shrimp-n-cheese grits with ham and veggies. YUM - Good southern summer fare! It was the ultimate gift of thanks for Jason to see Sam take off at eating it at the dinner table.

Included in my prayers this weekend are my sister and her family, relocating to a new home in Belgium. It will be a busy time for them but quite an adventure as well.

Well.. cheers to the week ahead and hopefully one filled with progress for all of us!

1 comment:

  1. Awe! Sam loved his Daddy's cooking! Jason should definitely cook more often......