All the Right Reasons... by The Jayhawks
As I lay upon my bed, I begin dreaming
Of how it's gonna be the day that I am free
Once I settle like the dust upon the table
But then you came along
You helped me write this song
I don't know what day it is,
I can't recall the seasons
And I don't remember how we got this far
All I know is I'm loving you for all the right reasons
In my sky you'll always be my morning star
Like a tired bird flying high across the ocean
I was outside looking in
You made me live again
From the mountains to the prairies little babies
Figures fill their heads
Visions bathed in red
I don't know what day it is,
I can't recall the seasons
And I don't remember how we got this far
All I know is I'm loving you for all the right reasons
In my sky you'll always be my morning star
From the train in Manchester, England
Lightning fills the sky
As I watched you wave goodbye
From the mountains to the prairie little babies
Figures fill their heads
Visions bathed in red
I don't know what day it is,
I can't recall the seasons
And I don't remember how we got this far
All I know is I'm loving you for all the right reasons
In my sky you'll always be my morning star
We made a family trip a few weeks back down to Orlando and to give Samuel his first Disney experience before our season tickets expired and before he had to go in for a replacement of the external stimulator probes in the OR at Shands. This was our 3rd surgery and 2nd go at the stimulator to trial how it might improve his gut function and slow or stop the progression that could quickly lead to interventions we hoped to avoid down the line.
The week was incredibly special because Sam who so often has to stay at home and away from potential stressors like illness etc.. was getting to experience normal toddler activities and the joy and amazement that only Mickey seems to inspire at this age. :)
He was sooo happy, but more importantly his sisters were able to share this time with him and that was very special for me. Max, although only 7 months, also enjoyed the experience and was an incredibly happy little guy the entire trip. Our trip was made easier by the kind accomidations made by Disney to allow our stroller into closer access areas. We did not have to wait in long, hot lines and we had a few special encounters that would have been impossible with his health issues. We had to take each day in small spurts with long napping in the condo and short visits in the park, but it was overall, a fun adventure that I am most thankful we were able to give him. We were especially thankful to our in-laws for the use of the timeshare week at the condo as they have done for us in the past. It is nice to be in a place with a kitchen, that feels more like home when you are staying that long.
Our timing of the trip came in the second week of school, which was not ideal but as they have had to watch their brother whisked away so many times during emergancies and for surgeries they don't understand, I felt this was a worthy decision. We also might have had to go anyways since a hurricane was barreling our way and everyone here was boarding up their homes. It actually downgraded and barely brushed through so it was also a blessing to not return home to serious damage and needed repairs or devestation.
It was hard to transition from the parks to more Dr. appts and then admission to Shands for surgery but we packed up our crew and drove the two hours back to his children's hospital. He was again a brave little man for the ardous process of his IVs and getting through the no food preop requirements. It helped to have some of our past nurses that are so nurturing and understanding of little kids who experience this amount of poking and prodding. I was amazed that throughout the proceeding week he only experienced a few "downturn" periods as I call them and most were in the night with not tolerating feeds. We were in good shape for the procedure and luckily we had no negative outcomes. He rested alot afterwards and we prepared to head home within 24 hours of surgery. He was even tolerating a slow rate of formula on the pump with a plan to work up to trying boluses.
We did have one less exciting part to this trip. The pulmonologist came by and watched him as he slept. She immediately showed concern that we needed to be more aggressive with his respiratory needs. She identified signs of chronic CO2 with clubbing of fingernails and toes. His noisy breathing, which I thought was far far improved from what he did as a baby, was described to be PEEP breathing and indicated pressure problems with his gas exchange and difficulty opening the lower bronchi. We knew he had chronic atelectisis and with some tracheomalacia issues, I guess he is still having to work very hard to keep open his little airways. He sounds great during the day though unless he is sick and we have come to only need oxygen during and after illness and for rescue from his bradycardia events. Looks like she is questioning that now...
So we need yet another sleep study, this time more concentrated on breathing than on seizure concerns. He may need cpap at night and/ or full time oxygen by cannula during the day. Even knowing this might mean significant aid to his development and well being, I am concerned that he won't tolerate the mask on his face when he is well. He gets incredibly resistant and angry at anything near the face except during those periods where he is too weak to fight. I just don't know what it will mean for management in his home and around town. It is hard lugging so much medical equipment as it is... let alone those cannisters. I am always happy when I see his pulsox getting sats back up in mid 90s so I can disconnect it and give him normalcy after an illness.
We have been home now a few weeks with this external stimulator and it has been very interesting. I am thrilled to say he has allowed for bolus feedings several times a day again! YEAH! But I guess I had hoped he would be eating more by mouth. I know, one day at a time. It takes time. I am pleased though for the hours off the pump that this gastric stimulator has bought us. There have been times when it seemed to be difficult to tolerate the volume by bolus but overall we got up to 100 mls or 3 oz every three hours. Before he was doing 55 mls an hour by pump which meant all that time we had to lug it around with him. Now he uses the pump at night and we try bolusing in the day. If he starts getting gaggy or in pain or saying it hurts, we just back off and try later. Here are pics from a day Sam and his siblings enjoyed some time out on the sunny soccer field with friends.
I think one of the most significant benefits has actually have come in developmental strides. He is lifting feet off ground as he jogs on treadmill at PT and off the floor. He is talking more, repeating more words although the beginning of the word somewhat unclear. He is gaining weight better than ever and is 28lbs. He is now 30th % for weight. He is still not close to being on the growth curve for height but he is moving on his own curve. He is not jumping yet but is trying with exuberant effort. He understands counting to 3 and seems to understand sorting colors and toys. He loves to dance to music and is incredibly social. We have been trying to widen his horizons safely with small outings to the neighbors or on walks. We took him to a church picnic in a open outdoor setting and he loved kicking the soccer ball with his dad. Overall.. I am pleased. I am praying about this trip tomorrow.
We will be off to see his surgeon in the afternoon and then have a sleep study that night and then possibly his surgery with placement of the stimulator in his abdomen. I am feeling sick about it all but I know we want better quality of life for him, less pain and more motility. Those are all the best reasons. God be with us on this one.
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