Thursday, October 6, 2011


I know I'm behind on updates. I've written a few but haven't had the time to go back and post them. So, this post will hold a few updates within it.

Bruises and holes run up and down his arms and feet. They were drawing blood for blood work from the veins in his feet and ankles, to preserve the veins in his upper extremities for IV's. Throughout the weekend it was evident that he was in desperate need of reliable, central access. The amount of meds and infusions that need to be run was only increasing. He was put on the OR schedule today for a new central line and we were transported down to the OR in the afternoon. Once we arrived in the pre-op area we were so happy to see that the surgeon that would be taking care of our boy was our usual, Dr. K.

Wyatt was very anxious and scared. He hates anesthesia and he let them all know it. While waiting for Dr. K to come out to the waiting room and tell us that all went well, I noticed it was taking them longer than we thought it would. He eventually came to talk to us, though the expression on his face clearly showed that it didn't go as easily as we were all hoping. He sat down and proceeded to tell us that Wyatt's lung disease must be more severe than any of us have ever thought. His respiratory status throughout the surgery was not stable and there were times that they were unable to get any air flow into his lungs. His body has no reserve of oxygen, like you or I would, and his oxygen saturations dropped very low, very quickly. There was a big concern that they wouldn't be able to extubate him. But they got through the surgery and eventually they were able to remove the breathing tube. At that point they came to get Bryan and I and we went back to the recovery area. We could hear him screaming before even getting to his bed. We arrived to him with his O2 saturations at 79, his face very swollen and his color poor. He was hurting very badly and incredibly scared. He needed (and wanted) the bipap machine that he's been relying on for the past week. It was sitting next to the nurse but she didn't know how to work it and was waiting for a respiratory therapist. Ugh...I can do that! So, we pressed the power button and put it on him. His SAT's started to slowly climb up and he settled down from his frantic state. I convinced him to close his eyes and sleep, and promised I wouldn't let anyone near him. He's so, so frightened of anesthesia.

The anesthesiologist came over after Wyatt was more settled, looking stressed, and said they didn't expect what had happened and to let her know the next time he needs to come to the OR and she'll go on vacation!

He did ok after getting settled on his bipap and eventually we were transferred back to our room this evening.

We started Wyatt on Methadone infusions around the clock last night. We weaned him off the continuous (basal) rate of Dilaudid slowly as we introduced each new Methadone infusion. He now has a "demand" dose of  Dilaudid through his PCA pump (his push button), in addition to the Methadone that's infused every few hours. With the methadone on board we actually reached a 6 out of 10 on the pain scale today. So exciting! We even saw smiles and were able to get him sitting in the tumble form chair for a period of time, playing with toys. We saw progress and clear glimpses of a more comfortable boy. We saw hope, clear as day. As the Methadone dose fades in his system and it's time for the next infusion, we can clearly see his pain signals return and he was once again more withdrawn and hurting. While disappointing that we saw the change in him, it was good for us to see as we know the the med is working as we thought. He's been wearing his bipap and still relying on its support for the majority of the day and all night, though we did trial the nasal cannula more today as we could tell that he was breathing a little easier with the spurts of decreased pain. It's been a day of progress.

We had a quiet night and an overall uneventful day today. Overnight his blood pressures stabilized more than they had been, his respiratory rate steadied and heart rates telling that he was comfortable. There wasn't much to talk about with the doctors this morning. "We're staying the course" was the only instruction. Throughout the day he played with play dough, was playing on the computer for a bit and was even painting at one point. He used the nasal cannula more and the bipap a little less than the previous days. We adjusted the Methadone dosing slightly and I'm anxious to see if it makes the difference that we're hoping for. He's tired out and tucked into bed for the night. Another day of good progress.

After I typed up our Wednesday update my computer wouldn't allow me to "publish" the post, so I decided to try again this morning. I figured I would just lay down and enjoy another quiet evening. Wyatt was being whiny and was agitated, but I was hoping he would just fall asleep. Thinking he was worn out from the activities during day. At just about the time that I settled in and covered up, all of Wyatt's muscles began to convulse intensely and rapidly. But he seemed conscious, asking us to "make it stop." His head and hair began to soak in sweat. A couple doctors and many nurses surrounding him trying to figure out what was going on. Was it a seizure? Was it not a seizure? His entire body rhythmically jolted for over an hour total before his eyes rolled slightly, eyelids closing and he fell into a deep sleep. His body still and resting. He woke up just a short while later, hurting "everywhere." After trying our best tricks to make him more comfortable he did fall asleep and had a peaceful night.

This morning as he was sleeping we saw several of our doctors, all checking in to see how he was doing. They were all called last night to ask for any input or ideas of what could be causing the extended clonic movements that were happening. No one had any profound thoughts. Still wondering if it was a seizure or not. As Wyatt woke late this morning, he's been weak and quiet, not moving much. I asked him about last night, wondering if he had any recollection of the events. He doesn't remember anything....talking to us, his body moving so intensely for so long, the rectal temperature that the nurse took. Nothing. Which makes me feel better, in a way. I don't want him to remember events like this. And it does tell us that he wasn't as conscious as we had all thought. He's done this before just recently, he appears somewhat conscious but has no memory of the events, leading us to believe it probably is seizure activity. He'll have an EEG today to see if a focal point can be spotted where the seizures could be originating from.

To be continued...
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  1. Oh my gosh it sounds like an absolutely exhausting and terryfying OR visit. I wish so badly there was something I could do to make it easier....My prayers and thoughts are continually with you guys.

  2. I hate that Wyatt is going through this! I actually wrote you last night but i deleted it because I was afraid the news would be bad. I understand his fear of anesthesia. I had a horrible experience one time with it and I've been terrified ever since. I hope the EEG will give some answers. I don't like that test either! I will be sending lots of prayers up for Wyatt. And for your whole family too!