Monday, June 21, 2010
What a day! Monday was quite possibly the busiest day I have spent at the NICU yet!
I missed the sunrise, but I was there. When I woke up around 6:30, the sun had already been out for over an hour. Jenny told me that Timmy's 6am blood cultures were clear. But it had only been 12 hours so not definitive.
James really did not want to miss rounds so he left for the hospital at 8:30. The exhausted side of me said, "Let James cover this one on his own. The kids are still in their jammies..." But I also really wanted to be there so we got everyone dressed and ready and went over to Bridgette and Daniel's place. (Thanks again for watching them!)
I blazed over to the NICU and made it around 9:45. I was fairly certain I had missed the rounds but had one of those funny thoughts in the washroom - wouldn't it be nice if I just walked through these doors and they were on Timmy? Believe it or not, they were! Dr. Bedrick had just received a call so everyone was taking a brief intermission but James was standing there and said that hadn't yet started on Timmy. Impeccable timing.
They started off with the planned extubation. Still on! The big hope is that we can get that tube out so that his airway can heal and get stronger. Melissa, the resident, was back on and confirmed that Timmy had only received the three steroid doses. He was also due for his 2-month immunizations last night but those were held off as well. (Thank goodness! It had crossed my mind at one point while I was there and I hadn't had a chance to bring it up and it would have been too late by the next time the thought came back.)
Feedings were still going well. Cultures looking to be negative.
I brought up the reanastomosis/extubation topic again and Dr. Bedrick said he had been unable to get hold of Dr. Cosentino. Lisa McCoskey, another one of the NNPs, said that generally if the surgery is within the next 2-3 days they would hold off but even if it were Friday, they would still try to extubate to give him those few days in the interim to rest and get stronger so it was still to Timmy's advantage to try to extubate today. It was agreed around the table to proceed with that right after rounds.
We had a fun photo shoot while we waited for rounds to finish and the extubation to take place.
Settings really do not get much lower than this. They had even dropped Timmy's PC after PEEP to 15.
Top: 38 weeks gestation
Bottom: 30 weeks gestation
Instead of extubating, Dr. Cosentino called after rounds. I got to talk to her and she told me that she wanted a barium contrast workup done first to make sure the descending colon is still open. Then she wanted to do the rectal biopsy Tuesday morning and would call us early early to get permission. Fabulous! Not to keen on being woken up at 6am, but more than ready to get the ball rolling. She made a comment at that point about how she's never seen me in the NICU. I told her that I was only able to come in Monday and Wednesday mornings with James and then at night. Wish it had crossed my mind to throw out that we have three other kids at home and she keeps ungodly hours! In any case, the big news is that she wants to do the reanastomis on Thursday. I guess she can't schedule a specific time, but one of us will need to be in the hospital again. I'm so excited for Timmy to have his intestines back together. It makes me cringe to think of him undergoing repeat abdominal surgery, repeating the swelling and the healing, but it needs to happen and I think the timing is right.
I passed on the information to James and Dr. Bedrick. At that point, our extubation time got moved from "after rounds" to post-barium workup, which was to take place at 1. It was 11:45 at that time. Bridgette needed me to pick up the kids around noon so I raced to get them and beg someone to come over while the twins napped.
Sondae, I really do owe you big time! So grateful that she was willing to come over at the last minute. Landon fell asleep in the car and let me transfer him to his crib but Callie never really went down. I made it back to the NICU just after 1:00 and Timmy was taken down to Radiology at 1:20. The procedure itself only took about 20 minutes from what I was told and came back clear. Hooray! He did really well with it.
Linda, one of the respiratory therapists, was with him the entire time and began getting the room set up for extubation as soon as they returned. She checked Timmy's cute little nose for CPAP mask size. He's about a 32, just a little smaller. I had told Sondae I would be back around 2:30 and by then it was already after 2pm. Thank heaven for a great support system and the love of friends. I was able to get in touch with our bishop's wife and she ran over to relieve Sondae so I could stay for the extubation.
Waiting for the extubation.
I just marvel at his sweet little face. It's even cuter without obstruction!
On the CPAP.
Doing well on the monitor. The top number is his heartrate. Purple is his oxygen saturation and yellow is his respiratory rate. All perfect!
Timmy's last vent settings. They really could not be any lower.
The doctors stepped away. Linda didn't leave, though. I'm very grateful for that, though it doesn't make sense to just yank a tube and head out. By 3:00, Timmy was an hour late for feeding so Cassie went to reinsert his feeding tube and that's when it all went south. He clamped down and just got so mad. His heart rate dropped and his O2 sats went down into the 50s. It is such a scary thing to watch. I think it was a little harder for James to watch than me this time around because I had seen things look much worse last week. It definitely validated my feelings to have James verbalize that it is a roller coaster just to watch your child fighting during a procedure!
Linda immediately jumped in to help and she and Cassie bagged Timmy for a while. At one point, Cassie ended up calling the doctors in because it didn't look like Timmy wanted to come back up on either rate and he was working hard; you could see his rib cage with each inspiration. As he calmed down, the retractions lessened but never quite went away. His heart rate and oxygen saturation rose back into normal limits. Dr. Bedrick had come back in and said he wasn't quite ready to throw in the towel yet so we watched Timmy's retractions for a little longer. I asked if we could give Timmy a little longer this time to adjust to the CPAP before reinserting the feeding tube. This didn't sit well with Cassie. The CPAP forces air into both the trachea and esophagus and, therefore, the belly and since Timmy has already had issues with his gut, this is obviously not ideal. With the feeding tube in place, it can be vented to give the air a place to escape without causing stomach distention. We found a happy ground of five minutes. Cassie swaddled Timmy really well and he did much better the second time.
One concerning item was that Timmy was "squeaking" with each inspiration, indicating that he was working hard to take in air, but it was nothing compared to what we had seen last week. No back arching and he was definitely getting air in, we just weren't sure if he just needed to relax to allow the air to come in deeper or if he would end up tiring out first and need to be reintubated.
Time went fast and it was already 4pm so I left James at the hospital to go relieve Sister Woods. When I arrived at our home, there were three minivans in the driveway. Not sure how Sister Woods was able to drive three vehicles but it turned out to be other friends who had answered the call to bring food (I was planning on a grocery trip Monday but obviously hadn't found the time to even make a list!) and another friend who had been wanting to bring dinner and just decided Monday was the night. I almost cried. I had been racking my brain on the way home trying to think of what I could make. Burritos was about it. No milk, no butter... And suddenly there was chicken, pizza, grapes, watermelon... Thank you to everyone! Words cannot express our appreciation for all you do.
James got home around 5:30 and I asked if Timmy was still on CPAP. No. But he had lasted made it an hour and a half. Three times as long as the last time. We're getting so close!!!
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