I stayed up way too late organizing things for the trip and writing out detailed notes for Jason and my mom on everything to do with the girl's busy schedules. It is funny how much is involved in passing the torch sometimes! I will admit to my "ziplock" obsession.. everything goes in a seperate ziplock and is labeled so there can be no room for confusion..and yet.. there are never enough ziplocks!
So after about 3 hours sleep, we set off around 5 am. I thought things were going well until we got over the fl/ bama line. That is when I heard Sam's breathing get more labored and the moaning sounds from the backseat. I stopped at McDs and he was obviously stressing for some reason, but I could not figure it out so I just repositioned him and got back on the road with some baby einsteins to calm him. Not long after this he had a brady low HR alarm but it was short and his heart rate came back up farely quickly. The rest of the trip there went okay. He had some rough nights not sleeping, arching in what seemed to be GI pain but he got through it and had a relatively uneventful trip home.
While there, his appointments were in many ways.. more optimistic and helpful. The mito specialist had done more genetic testing of blood taken from Jason and I which has again revealed no abnormalities. We talked about how this past 6 months has been the best stretch of Sam's little life with far less major problems. I asked about my fears that we would have recurrance of the severe issues with the onset of fall flu/ cold season. They do believe this time of year may pose risks for Sammy and we will need to be overly cautious but they want us to take advantage of opportunities to expand his development.. keeping in mind his limits. They have watched for signs of autism and are not seeing that in his picture in any way.. yay! He is very social and engaged in his surroundings. He is quite age appropriate in many behavioral areas. He does show some sensory behaviors when calming himself to sleep with swinging his head back and forth. He still does this movement of his arms and feet to show happiness and communicate feelings. He is very bright and understands far more than he can communicate. We talked about how much he is doing now since gaining weight and staying well. He is cruising and vocalizing and bouncing to music. He is eating many new foods orally and although he sleeps like 15 or 16 hours a day, he is very happy to play with toys and explore his world when he is up and about.
He had a Resting Metabolic Rate test done as well. The first time he had this done, he was a 9 month old and slept through it entirely. They place a large egg shaped dome over your child and run oxygen into it while they measure your carbon dioxide output etc.. as you breathe restfully. This apparently helps them to get a measurement on your caloric spending while at rest. Sam had failed it before, but I was hoping he would do better now that we are experiencing seemingly better wellness lately. I don't have results back yet, but I wonder what all they could even study since he was like a completely different child on this occasion. He was angry and put out by this test. He hated the dome and as it was warm inside and Sam decompensates in heat, I watched him morph into his crash behavior. The tech and I tried reading to him and singing but he was not willing to cooperate. I never saw such relief as his face when she lifted that thing off his body. They said they did obtain enough material for long enough so at least that is done.
The Nutrition and GI appts went better that this. They were pleased with his progress and actually decided to drop back on our GJ feeds by about an ounce per day. We will be watching how he handles this small change with routine weight checks. This change will allow Sam to go 8 hours off the GJ pump which is huge for us since that means he can be more unencumbered by the tubes. With all the cruising and crawling he is trying now, I wanted him to have more flexibility of movement. They are not counting his oral feeds in the caloric figures which are over 1000 calories a day right now.. quite a lot for a kiddo his age. He just needs more.. I guess, than most. They will not clear us to try bolus feedings again through the G tube (direct to stomach in faster amounts) even though they know some food and all his meds are going into the stomach. They don't want to rush things and land back where we were when we had to switch over to the GJ. I want to believe he could normally handle it when well.. and just not during periods of illness, but they think it could pull energy from other areas.
They were a little concerned about the difference between his strides at gaining weight versus the length. He is just barely on the growth charts for weight but still a far ways off for height. He is considered 85th% for personal weight versus personal height..I always thought the higher percentiles were good.. you know how it is when you hear other moms bragging to eachother about their child being 100th percentile for height and weight.. but I guess that is when comparing with the peers on each level, not on your own ration of height against weight. Basically.. they don't want to make a very short, fat baby. This would make his PT strides that much harder not to mention the stress on pulmonary/ respiratory systems and risks of diabetes etc. So they will be watching him closely. He looks great to me.. proportional even.. just much smaller than his peers. Surely he can't continue to gain at this rate without some additional length. What a nice feeling it is to look at your baby's body and feel pride that the looks of FTT are no where in sight. FTT = failure to thrive, for those readers that are unfamiliar with the ugliest words to ever be labeled on your baby. Well, he is thriving farely well now.
So overall the trip went well. We were blessed by the opportunity to stay at the RMH again and met some wonderful people there. It can be hard to meet people there as well since many are going through the roughest days and you can recognize in their eyes feelings you have shared. One family we met have a daughter who was there for her muscle biopsy and consultation with our same mitochondrial disease specialist. They were also from Florida and had been through over 11 neurologists in a 10 year search for answers. Their daughter's trials were more gradual in nature and it seems like the last year or so have had the most devestating toll on her life as they saw her dramatically decline in motor ability. She is now ataxic and unable to walk or move from her chair. She no longer speaks but apparently has cognitively remained unchanged. I am praying for them as I saw that they just want to know answers and I know from our experience that the answers are not always within our reach. Only God has all of them. It is painful to watch a mother explain her years of agonizing worry and concern. I hope they find some peace and that their daughter not experience suffering and pain.
I also met the family of a child severely injured in an ATV accident. She had already undergone several brain surgeries and the reconnection of her arm to her body among other serious issues including losing an eye. The family was busy unpacking boxes of get-well gifts sent by her 4th grade class and it was hard for me to comprehend how her life would forever be changed by this accident. I have met victims of this same type of avoidable tragedy each and every time I have stayed at the RMH in Atlanta. It seems unreal to imagine the immense loss that has taken place in the lives of these families over this popular outdoor hobby and the guilt they probably feel about whether it was safe to ride these vehicles for sport at that age. I could not help but wonder why children are allowed to take part in such dangerous activities..and I am ashamed to say, that I found myself judging the parents... which leads to why I am writing about this family.
Although I was praying each night for this sweet little girl whose dreams, opportunities and maybe even her life, could be cut short over what?? a thrill ride?..I began to realize that I needed to pray for these parents. They hardly needed to be judged over whether they made wise decisions for their child's choice of play toy. They needed my support and understanding and prayer. I am disappointed in myself that it took such a period of reflection for me to realize this. I hope God will lift any pain or guilt they were feeling about what happened and help them through a torturous time.. through all the surgeries and therapy, through endless waiting and the unknowns about the future. I do ask God to help all of us parents make more careful decisions about our children.. but more importantly, I ask that we be more willing to reach out and find common ground even when things seem so hard to understand. I have a long way to go in my walk on that particular road. I realize how many mistakes we all make in life but in the end, God is more concerned with how we move away from them, taking stock and changing for the better.
Coming home from these trips always leaves me thinking hard about what most families consider hardship... you never entertain these situations in your mind until it is happening to you directly. It is humbling to see the face of real hardship and then come home and be able to count your own blessings. Of course God made this world such that no one person's experiences match another and I am not sure I would want to live in one where they did, but I hope when I see the hardships of others I gain more perspective and realize how blessed I really am in this life. I have three wonderful children who are learning and growing, albeit with their individual differences. I have overcome hardship and become stronger for it but I make mistakes everyday. I have friends and family to love. I have shelter and food and I have my faith. Even in hard times, it could always be worse and at least we are never alone.
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