6:00pm: Kristen and I are back in the room with Reid and the dust seems to have settled --- for the moment anyway. We got back here around 4pm and at first sight, things were as we had expected them to be. That was until the nurse had to take a blood gas and pricked his foot which sent Reid into a thrashing, crying (without sound) fit. At that point, we realized that things weren't as we (nor the nurses) expected them to be. He was supposed to be knocked out an comfortable, but with the drugs that he has had over the past 9 months, his drug tolerance has skyrocketed. Even with bolus doses of morphine and fentanyl, they only lasted for about 10 minutes. He is now on ativan and morphine drips to keep his discomfort in check and will most likely be until tomorrow. Seeing Reid in that much pain and not being able to do anything about it broke our hearts.

He is connected to a vent that is breathing for him. They are actively weaning it and hope to have him off of it by tomorrow but will let Reid be the one who dictates the moves they make. They want to push him a little bit, but not to the point where he takes a step backwards.

Feeds will resume this evening at some point and will be given continuously, working from about 10cc per hour and eventually getting up to full feeds.

Kristen and I are going to take off around shift change and head home. My parents are in town and are staying with us and are cooking dinner. We haven't really been home for dinner in a long time, so I think we are both looking forward to a night away from the hospital. Our latest routine has had us at the hospital until about 10:30 at night, so there might be a glass of wine or two tonight to relax, collect ourselves and get ready for tomorrow.

A new journey has begun today --- and it is one that is going to land Reid at home. We still have a lot of questions and don't know how it is all going to pan out, but all of those questions will be answered with time. Thanks for all of the prayers that have been sent our way.

3:15pm: The ENT surgeon just came out and told us that the trache surgery went as planned and Reid did well. The other surgeon took over for the "little whack" as he called it. We should know more shortly. The hard part is over with!!!


1:00pm: We just met with the surgeon and they said that they will come to get Reid in about thirty minutes. We had to sign two new consent forms: one for the circumcision (they got it all worked out) and another for the surgeon to look at his ears while he is under. When Reid had his hearing tested, they noted some fluid on his left ear and they are just going to takes look at it while they have him.

The butterflies are flying.

11:30am: Hurry up and wait is the story of today. We were told at 6 this morning that there was a 25% chance of him having surgery at 8:30... that is until they told us that they were not planning on doing the circumcision (we requested last week that this HAD to be done at the same time). To many, today was the first time they had heard of this request and they said that it was a slim to none chance of having that procedure done today. Kristen, being Reid's biggest advocate, made it very clear that this was unacceptable. Being such a minor procedure in the whole scheme of things, they needed to figure out a way to get it done.

Fast forward a few hours and we have been told that the surgeon that did Reid's last surgery is now trying to fit the circumcision into her schedule. Reid has an IV in his right arm and getting fluids but has not eaten since 10:15pm last night. He has been asleep in his mother's arms for most of the morning, so he is actually handling the lack of feeds a little better than we had expected.

We have been told that we will probably have about 10 minute's notice before the OR comes up to get Reid. He will be getting a dose of Versed right before to help him relax and not remember his little journey to the operating room. We are just afraid that he is going to "lose it" on the way and this medicine will not only help keep Reid calm, but his mom and dad as well.

Anyway... not much else to report. We are in a holding pattern and I will update the blog after we get Reid moved to the OR. We have had a couple of visitors from the NICU stop by this morning to wish Reid well and have had numerous text messages and emails from friends and family. Keep the prayers coming that we get through today successfully and that it is a smooth transition for Reid over the next few weeks.