The last couple of weeks have been challenging. To answer the question most people will likely have: Max will not be coming home before Christmas. He was doing really, really well right up to the vent discharge meeting, and a number of changes were made to his medications, dosages and frequency right around that same time period. This combination of changes did not sit well with Max and his oxygen needs increased to the 45-50% range for a long enough period of time that it "reset the clock" so to speak on him going home. I am happy to report that after a little recovery period, Max is doing well and seems to be back to himself. His oxygen requirements are back in the high 20% to low 30% range, and he is on a manageable breathing treatment schedule (4 times a day instead of 6). Even though Max is no longer scheduled to come home next week, we had this past Thursday night planned for what they call "rooming in." This is when Kate and I (and Wes) spend a 12-hour period (overnight) with Max in a room adjacent to the NICU, and we are responsible for all of his care. This was kind of scary and really exciting at the same time. We got there around 5:30 and got settled in (the room was about 10x14 if I had to guess). The room has a couch that folds down into half a bed, so we took along the Aero Bed (thanks AGAIN Tony and Cara), and we also had the Pack-n-Play for Wes, and they had to fit Max's crib and all of his hardware in there too. Needless to say, it was pretty tight. By in large, the night went well. We did have one event at about 11:00 where we had to change out his trach because he was desatting a bit. This is not an easy procedure, but it needs to become second nature for us, so the practice was good. The problem is that it was just practice and wasn't necessary. The reason he started to desat (meaning his oxygen saturation fell outside of the desired range) was because of a nebulizer that we had plugged into the "ventilation circuit" for a breathing treatment that was not properly assembled. It took us a little bit of time to deduce down to the nebulizer being the problem, but it was a very good exercise to go through in the hospital vs. our first night home. "That is why we have people room in" was a common phrase the next day. Nurse Ashley was actually in the room when all of this happened, but she did her job and stayed out of the way and offered what I will call "limited" hints. I ended up getting some good sleep, but I had been up since 4:30 in the morning and had worked 11-hours before driving straight to the hospital...so sleep came a little easier for me than Kate, not that she didn't have a stressful day getting everything together that we would need to have Wes out of the house overnight. Max sets off a few more alarms than his brother does, and they are certainly more shrill. Turns out I can sleep through those too, which should come as no surprise to anyone who has ever had the pleasure of sharing a house with me, but they kept Kate awake. In time I am sure she will get comfortable with them and the fact that we will have a nurse in the house when we are sleeping should help a little bit.
So the new date for Max coming home has been penciled in as January 4 or 5. We are so excited. It would have been great if he could have come home before Christmas, but at the end of the day we want him home when he is ready to be home. Please join us in praying that Max can stay infection free for the next few weeks (and years!) and that we won't have any unexpected bumps along the way.
Wes has been a good boy with all of the crazy stuff going on. We had a lot of training on the equipment Max is coming home on and he slept through the whole thing. Then he slept for about 13-hours straight at the hospital on Thursday night, despite all the new alarms and surroundings. We did finally get his surgeon to agree to an upper GI, and that all looked good, so hopefully no additional surgery. Naturally, the day after the procedure Wes spit up formula for the first time since he had his surgery. So something is either wrong and not showing up, or the retching is some sort of learned thing. We don't know, we just know we want it to go away.
We covet your continued prayers for the boys and for us. The last few weeks have made us realize what exactly it will take to care for Max at home, and it seems pretty daunting right now. Pray that our nerves will be calmed and we can make all of the arrangements necessary before he joins us here at home.
Here are some more recent pics: