It's true. This boy does not sleep. He has slept for about 35 minutes of the 10 hours we have been here. Frankie Faun has been in a better mood than yesterday, but a far cry from happy. We took turns consoling him all day. Today's high lights include a clogged feeding tube. The new one is now in his right nostril.
We have seen an improvement in his stats while he has been Crankie Frankie on roids. The steroids are a super strong anti inflammatory and they hope to wean him off the oxygen while he is on them. We were unaware of this until tonight. His heart rate sits in the 110-120 range when relaxed and the 140-150 when he is up. He used to be in the 170s. His oxygen saturation is sitting above 95% while his air is at 3 liters at 35% right now. His breaths per minute are at 70 BPM at an actual count. The weaning of the oxygen is a catch 22 since he gets pissed easily and needs more air but then doesn't require as much due to his steroids.
Last night they did remove his PICC line. That was the more permanent IV. They had stopped using it, but kept it in in case they needed it. It was flushed daily with a blood thinner to keep it from clotting. But it clotted anyway and they just went ahead and removed it. It is so much nicer now that we have Frankie Flax's arm back. We can dress him so much easier now. His Viagra and steroids are given "orally" through his feeding tube.
As for the omphalocele, the surgeons finally made it by at 8:30 this morning. They looked at it and honestly did not know what it was. Their educated guess was it was his liver we see. That things has shifted around. This is quite possible since it did only take one piece of xeroform to cover it. Since it was not compromised or leaking, they did not have much concern about it. They did stop the silvadene (burn cream) for the moment. We did not get to see the whole thing today because there was no need to re-wrap it again after the surgeons did this morning. We did replace the outer gauze because Frankie Fuchsia did pee on it and we didn't notice any problems.
Frankie Flesh Tone did sleep for about 35 minutes earlier when we walked over to the Central West End for a quick dinner. What a double disappointment. We were told there were tunnels that connected our building to a building closest to the CWE. I was stoked. I thought we were going to an underground maze that included all the maintenance systems. Nope, these "tunnels" were sky walks. Boring. Then Jimmy Johns just doesn't make a good sandwich. But Frankie Fern has been asleep the whole time I wrote this, which is roughly 40 minutes, close to a new record. I lied, I just handed the computer to Alex to have her proofread and she said, quote, "He just woke up and took a fat shit, it has been only 28 minutes." Such a classy lady I married.
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