Progress is a good thing

I had every intention of writing Monday or Tuesday and here it is Friday already! If I had the energy, I might feel sorry that I didn't get a post up sooner, but as it is I'm not even sure where Tuesday through this afternoon went!


More important than my concept of time is an update on Peyton - he is doing well in a word. Sunday they were able to take him off of oxygen and he could support his own breathing on the pain medication (that was the main concern). Monday they took the epidural out of his back (they said it wasn't doing any good and when they went to take it out they found it had already dislodged from the site - not helpful, but normal occurrence in children). Tuesday they decreased his pain medication and gave him a patient controlled analgesic push button - without a doubt the most helpful addition of the week, if not the funniest. Wednesday they decreased the pain medication again, we got him out of bed for the first time, and we had the first clear indication that his bowels were working again. Thursday they increased his pain medication for times of sleep, and we forced him to walk to the kitchen down the hall. Friday Peyton vetoed the decision to take his nasal tube out so he had a day off (if there is such a thing here!). I know the above doesn't paint a very clear picture of how he was feeling, but it's a start - those were the major accomplishments of the week. Given the extent of the tinkering the surgeons did inside Peyton's little tummy I am impressed he is progressing as quickly as he is.


Saturday and Sunday last week were pretty much a blur, as were much of Monday and Tuesday. We weren't sure whether we were not yet at the corner, stuck on the corner, or around the corner until Wednesday. At that point, even the surgeon breathed a sigh of relief when it appeared Peyton's bowels remembered what to do. Thursday and Friday were days focused on healing and waiting. There do not appear to be any complications at this point thankfully, but Jordan and I are not in a hurry to go anywhere yet. Peyton himself has been slower to indicate any interest in eating this time around and we are fully supportive of that decision! The surgeon wrote an order that Peyton could start, "Blue popsicles and ice chips" on Thursday (one every 6 hours). Peyton was thrilled with the first one, but by the second one yesterday it felt like we were trying to get him to eat vegetables. He initiated an attack on three more popsicles today, but only conquered 1. We are more than willing to let him lead the way this time, as much as we are eager for him to start eating solids again. Fortunately he is getting most of his nutrition through an IV line right now so he is not wasting away, but he has lost alot of his muscle. I have no doubt it will not take long to build again, but it is so strange to grab his thighs to tickle them and to feel them squish in your hand the way they do! Poor skinny little fellow!


I briefly mentioned our affinity for the "pain button" - I should really explain. The first time Peyton had surgery a couple weeks ago we gave him Morphine, after which we decided he and Morphine were not compatible (grumpy describes his mood on it nicely). This time around we decided to go with Fentanyl in hopes it would more positively impact him. It has been much better from that angle, but we were told all opiates can slow the gut down so the anesthetist wanted to drop his dose as quickly as possible to lower that risk. The best way to do that was to provide the option to increase the med dose when we knew he would be more likely to experience discomfort, like when he had to sit up, move or start walking. It also provided a very necessary emotional aspect of healing for Peyton in providing an element of control over his discomfort. To illustrate best, you would have had to watch him the first time we tried to get him out of bed into a nearby chair. We gave it a push a little in advance and again when he sat up and began to move. He pushed it a few times in the process of moving to the chair, but when we moved him back to the bed from the chair he pushed it no less than 29 times! Thank goodness there is a lockout period so he can only get one dose every 6 minutes, but he was pushing for all he was worth! We finally had to nearly wrench the button from his hot little fist or he would have kept pushing! He also quickly learned that lying still was lots more comfortable, so between knowing what the button does and which position is best, it's a good thing he's an active little boy who won't stop for long or he would forget he didn't really think he could move! I was initially worried he would become dependent on it, but he forgot about it today and didn't feel the need to use it once all day (besides, we kind of accidentally hid it and Mommy forgot about it too!). Hopefully we will be able to go to oral pain relief methods soon, if any are needed at all. He is so much tougher than I feel I would be given the same circumstances!


Tomorrow the surgeon is hoping to take the drain out of his stomach and Peyton is less than thrilled with the idea. He doesn't want tomorrow to come and I can almost guarantee what his first thought will be tomorrow morning. Hopefully the surgeon will be by first thing rather than last and it will go smoother than we expect. Peyton tends to fear a situation more than he actually has a problem with the actual situation and I expect this will be the same (don't know where he got that tendency from...). This will be a big step in the healing though, and it will be so nice not to have that cord attached to worry about. (I nearly ripped it out lifting him into his wheelchair yesterday when it got stuck on the foot pedal of the wheelchair! He quickly let me know something was not right and I paused with him in mid-air, and mid-scream until we figured out what had happened!)

I would love to write more but I am realizing the above is not as coherent as it could be and my brain seems to be in sleep mode though my eyes are still open. I will sign off and promise to write more later but better not say when! We love you all and are so thankful as always for your prayers. Please add a few children to your list: Abby, Mikayla, and Oliver - they are dear children with amazing parents and we pray God will bless their families abundantly.