A Lil' Boy's Journey to Live….

Riley seems to be doing Great Decannulated and will be discharged on Thursday! Yay! Even with Riley doing so Great he actually does have lung disease .. which we knew since we were inpatient after Transplant. That being said when Riley sleeps his pulse ox likes to drift into the 80’s. Mind you before transplant Riley sat around 70% at rest on 4L of O2. When he had the trach he slept on 1/4L of O2 feed through his T Piece. We had many conversations about after the trach came out he may need to wear a nasal cannula to sleep. Always referencing to before transplant when he wore it all the time and that now it would just be at night. He always seemed Ok with the idea. So last night they didn’t want to put him to bed with the cannula. They wanted to see where his PO would sit. Of course it went into the 80’s. Well once Riley goes to sleep your not getting them on. Not with his PTSD. So last night we used blow by .. for what it was worth. Tonight … I said we needed to put the cannula on before he goes to sleep. I had talked with Riley about it throughout the day in preparation. As bedtime neared I put the cannula on him. At first he was saying it hurt .. which it doesn’t but then his little lips curved down and the tears began. It took everything I had not to cry with him in the moment. We never imagined wearing the O2 after Transplant and haven’t seen him with a nasal cannula since he was wheeled away for Transplant in March. I just tried to reassure him that as soon as he wakes up he can take it off. That it’s not like before .. It’s just when he sleeps. He finally calmed down and feel asleep with Dad. 
I try not to make any promises in regards to the future. I know they have some concern that his PO will begin to drop when he’s really active .. running .. playing. He did fine with the 6 minute walk today that actually took place after we had already walked the 6th and 7th floors. They do want us to check him though to keep an eye on his O2 when he his active. 
We have learned while on this Journey with Riley that we have to Live for Today .. for the Moment and Today is a Good Day! Riley gets to go Home Thursday and begin His count down to Make a Wish .. ♡♥

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