Hot n Cold

Every time I get on to blog I feel like we either have exciting, hopeful news or heartbreaking news. This entry will not fail in the Hot n Cold theme that engulfs my life. This past week has been one of frustration and sadness for us. Nothing dilapidating but something that took the wind out of our sails. As you all are aware, Payson, was supposed to have his trach out this past week. So, instead of a celebration we had to place hope in a tomorrow. We did continue with his procedures which showed nothing significant. While Payson was in recovery the doctor informed us that we needed to take our time trying to get Payson's trach out and that maybe sometime in the next year we could get it out. One test showed that he does not chew his soft foods, but ends up swallowing them whole. Ahh, ha! That helped solve the gagging/vomiting issue, so now we just use a chopper and cut his food up to fine little particles. As soon as I knew those results I was on a mission. There was nothing holding us back now! He could get the trach out since we had an explanation for his GI issue and confident he wasn't aspirating. So, I told our nurse that I would not leave until they removed the trach. Within the hour my ENT showed up with 2 of her "lackies" to hash it out with me. I gave them my best shot and helped give them a clearer picture on where Payson was functionally at. Finally, she agreed to compromise! She would keep us an extra two days and have him capped 24/7. Then in two weeks if all was okay we would try to remove the trach. I couldn't believe it and was excited. After a quick downsize in trach we capped. He had his sats #'s perfectly! Actually his O2 saturation was higher than it had been all day. We were so pleased and hopeful! As soon as he went to bed we began to see his normal saturation drop...95-90's, but they didn't stop there and continued to decline. After a little while they put him on O2 through a nasal cannula. It was a rough night as he didn't want anything on his face or in his nose, (can't say I blame him there). The next morning we all realized he had failed his trial and we needed to quit before he suffered. With a disappointed heart I had to admit he couldn't do it now. Please remember this kid was scoped down his airway and GI track then had a probe placed down his throat for a whole day. He was not in tip-top shape to be trying anything, so I pushed him hard. Once everyone agreed it wasn't the time we headed for home. Once we got home he just went downhill. Eventually requiring O2, the vent and an antibiotic. I haven't gotten too disappointed I guess I feel like we have to pick up our spirits and carry on for the long haul. So, I just took this sickness in stride and have easily put him on the vent. He sleeps so well and his alarms remain silent at night when he is on his vent! He is getting better but two more tests have been delayed due to this development. Yes, this sucks! No, No, No this blows! Yet, I have no other choice!