Day 83 - Post Op Post

Today is day 83 of Joshua's life and hospital stay. That leaves just 23 days until Christmas and his homecoming.

Joshua has had a rough few days.
Monday:
Steve and I arrived at the hospital around 6am. He had slept through most of the night, getting a final bottle of Pedialyte right before midnight. He was awake and cranky when we got here and I was able to rock him back to sleep while we waited for them to come get him for surgery. The anesthesia team came to get him around 7:15am. He loved the walk through the hallway. It was almost heartbreaking to see him so mesmerized by just being outside that room. So they took him in and started anesthesia and an epidural for the incision site. They also put in the ventilator. He was fine during surgery. They were able to reconnect the intestines as planned and there wasn't an overabundance of scar tissue to deal with, but there was some. The surgery itself lasted about 4 hours. They took his entire line of intestines out and measured and checked them over thoroughly to avoid missing anything. The surgeon was very confident that everything had been done properly. The was one surprise in that he has far less intestine overall than they previously thought. We were initially told he had 40cm of the top portion and 120cm of the bottom portion for a total of 160cm. He actually has 55cm of the top portion and another 55cm of the bottom portion for a total of 110cm. We're not sure why the huge discrepancy, but it is believed to be because the original measurements were just assumptions and not actual measurements. Anyway, it shouldn't be a problem that he has a smaller amount because we've been successfully feeding him for awhile now and if was going to be a problem, it would have already been. The surgeon said every body is different in how much length it needs to be able to successfully absorb the nutrients and grow the baby. He said if he wasn't confident in how well he would do, he wouldn't have reconnected him. I suppose time will tell there, but I'm pretty confident he will be fine.

So he came out of surgery with the ventilator in, a replogle (a naso-gastric tube that suctions out the stomach secretions to give the intestines a time to heal), a foley catheter, an epidural in his spine to continually numb just the area surrounding the incision, a PICC line that was running his pain meds and fluids and an IV in his foot for more fluids. He did well Monday, mainly resting. He slept 99% of the time, only waking very briefly a few times.

Tuesday:
The day started normal with our goal of getting him off the ventilator. He was continually breathing over the vent, meaning the vent was set at 30, he was breathing at least 40-50, plus he was more awake and agitated with the tube being in his mouth. We started him on the IV fluid feeds also. They took down his morphine and versed by half to try and wake him more so he would do better once they took the vent out. He was becoming more and more agitated. At one point, he cried (silently with the vent in) hysterically and the vent machine started alarming, his heart rate dropped and his O2 saturation went down. He started turning blue in the face and lips and we panicked. A nurse came immediately and started bagging him (using the bag to force air into him). He was able to stabilize with the bagging. By that time several respiratory team members and nurses were in trying to figure out what to do, they decided it was best to just pull the vent then as they assumed his problems were just because of his agitation with it. So they pulled the tube out and he just went lifeless and wouldn't breathe at all. The continued bagging him, and also put on a nasal cannula, but he would not breathe on his own. No one has yet been able to explain why that happened, but it was the scariest moment of my life. When they would take the air off to see what he would do and he just laid there, it was so awful. I just stood in the corner in a daze and Daddy was pacing by the door. It was just horrible. They eventually decided they needed to put a tube back in and then proceeded to do that. Once it was back in, he stabilized again and was fine. They had him up to 100% oxygen for awhile and he really perked up with that. He got color back into his skin and he rested. They think it may be that he was still just too sedated. Hopefully when we try again, it will have a much better result.

He was mostly fine the rest of the day. The tube causes him to have lots of secretions that need to be suctioned out (very normal) and sometimes it can cause him to "desat" meaning his O2 level goes down quickly, but after suctioning him it goes right back up. That's all a product of the tube being in there and not that there's something actually wrong with him.

Before we left for the night, he woke up for about 15 minutes and just stared into our eyes and I just sat there and talked to him and once he even tried to do a little smile. It was so nice to be able to connect to him like that again. I just love him so much and can't wait until I can hold him again and love on him. He's my little sweet baby.

So today: Wednesday:
We got here early as usual and heard that he had a pretty good night, but this morning was showing signs of being in more pain. They had discontinued the versed, so he was just on a small amount of morphine and the epidural. He was pretty agitated when his nurse and I examined his belly and we felt he should get a PRN (as needed) dose of morphine to calm him and it did. His hematacrit levels have been slowly declining over the last day or so, so they've ordered him another small blood transfusion. We should be getting that done soon. They had to put in a new iv for it because the one in his foot came out overnight. He was doing that horrible silent cry again (it just tears me up to see him do that, his face is just in a hysterical cry, but he doesn't make a noise. Oh it's awful) so we decided that since he wasn't due for another PRN dose of morphine, we'd give him a PRN dose of versed instead. We did that and he finally after a couple of hours of agitation, went to sleep and rested. He's resting now and we're still awaiting the bloods arrival. We're not going to try to take the vent out today. Maybe tomorrow or the next day. We really feel like maybe things happened to fastly and he became way to uncomfortable, so our goal for today is just pain control. Hopefully that'll be done and he can heal enough in the next day or so to come down from the meds. The meds also slow down the intestines, so ideally we'd like to wean him from them so we can get those intestines going, but right now he's just in too much pain and rightly so, he had a major surgery. So Daddy and I both agree that we just want to leave him alone for awhile and rest and heal.

Abby and Noah are doing well. They spent two nights with cousins and had a blast!! Now they're with my Mom and tomorrow and Friday they'll be with Steve's Mom. They've gotten to do lots of fun things and I'm so grateful to have the family around to not only take care of them, but to also "show them a goodtime"!

Daddy and I are doing ok. We've had a few rough and long days, but we're right where we want to be and that's with our little baby. We make a good team for Joshua, I'm the comforting one and he's the advocate (talking with the docs and making plans). We do well together.

So that's pretty much it for now. I'll update again when I can. Thanks so much for all the prayers and support. We have needed it.