First off, I want to apologize for any of the previous posts that have typos, incorrect words, nonsense, etc. Most of the time I am typing these blogs from my phone and auto-correct can be such a pain sometimes. So, please pardon my errors. At some point, not any time soon, I will likely go back and re-read each blog and make corrections...or maybe not. We will see.
Okay. Here I go. This will be a long one.
Last week I suctioned him...and I posted a video. For the rest of the week he did well. They took him off the ventilator and put him on CPAP. CPAP doesn't give him breaths, but provides pressure into his lungs. He didn't like the pressure and shallow breathed, but he did fine on it.
Come Friday, I get to the hospital and then all of a sudden, with Nicole holding him, his heart rate shot up, he turned bright red and started moving his left arm back and forth. Nicole said that it looked like a seizure. I wasn't convinced. Now, to be fair to Nicole, I didn't watch him the whole time, so I am not really sure exactly what happened at the beginning.
Fast forward a couple of hours...he is now in his bed, we completed his cares, and I am standing over him, playing with him in his crib....what happens, he has another episode. This time I watched the whole thing. He got bright red in the face, heart rate hit 202 at one point, shaking his arms and legs and staring off into nowhere. It was odd. Totally looked like a seizure. No one was certain what was going on as this was new, so we went home and he had another, a couple of hours after the last one. An EEG was ordered so his brain activity could be watched. We played with him for a while and then headed home. It was a weird uncomfortable day.
Saturday...EEG on, we hung out. Not much to report. A couple of seizure looking things happened.
Sunday...EEG came off. Neurology let us know that what we were seeing were not seizures, just normal baby movement for him. Had a good day and enjoyed the evening. We did the trach ties together and then went to dinner with some friends, in a restaurant. It was great.
Monday...I was at the hospital a little later than normal and the doctors came by early for rounds. This was great because I could tell that Pierce was upset with the CPAP and wanted it to come off. So during rounds, I asked them to take off the CPAP and Dr. Bahrami agreed and said we would put him on a trach collar. GREAT! As we continued we got to feeding and I asked about bolus feeding instead of continuous. Dr. Bahrami again agreed but wanted to wait for a couple of days so that he could get used to the trach collar. GREAT! Then off to work I went.
The first day with the trach collar was hard, for Pierce, for Nicole, for his secretions, etc. Everything was tough, but the NICU team kept assuring us that everything was 'normal' and that we shouldn't be worried. Yeah, right. Sure. Don't worry. Easier said then done. Anyhow, this was the day that we were going to do our first trach change. Jen was our nurse and was confident that we could do it and let us talk her through the procedure before and while we were doing it. She would stop and ask questions or correct us, but overall, we completed it and it went well. I must say that it is a bit strange to remove something from your child's neck, see a hole in his neck and then put something back in that hole that you know shouldn't be there. The stoma looked good. It was healed nicely. It will get tougher as he gets older and overall, Jen said that we did a good job. This first time, Nicole was the one to replace the trach. She did fantastic and she said that it was not that tough. I know that we are both a little weirded out by how it will feel, how easy it will go in, etc. but Nicole's confidence and statement that it wasn't tough, makes things easier. He calmed down and went to sleep and we went home, ate dinner and went to sleep.
Tuesday...he had a much better day. He seems to be getting used to the trach collar. Everything seems to be going well. He was a happy baby.
Below are some pictures over the last seven days. Enjoy...we have been.
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