Pierce - Age: 2 months 3 days

As we come to the middle of the week, we realize that we are closer to bringing him home than ever before. The last couple off days have been hectic and quite a push to get things completed before his homecoming.

We have been fighting with the insurance company to get things done expeditiously to make sure that nursing is covered. That has been a nightmare. He can't come home until we have nursing set up. We can't get nursing set up until insurance blesses it and gives the nursing company authorization. Coupled with that, we have to ask for special review through Nicole's insurance since nursing isn't covered at all in her plan. Hopefully they say yes. Keep your fingers crossed.

We just got our delivery of medical supplies last night. Honestly, it could be much worse. The armoire that I put together made a big difference...and it looks better than what everyone else was recommending. Thanks Ikea!

On top of all that, we found out yesterday, two days before being discharged, that Pierce is deaf. There was no response in his brain stem when they tested his hearing. Unsure if his brain stem will fix itself, but it seems unlikely...at least there are no documented cases of that happening. So in our spare time we will be learning a second language.

This morning we learn how to use the equipment they just sent us. That's it for now. I'll keep you posted.

Pierce - Age: 2 months 1 day

All,

So, this weekend went fine. He had some issues on Sunday with his secretions, but Nicole and the nurse put some saline in the trach, bagged it to push it down a bit in his trachea and then suctioned it out. They then kicked the warmth up on the humidifior. This seemed to work as last night he was doing well and when I came in this morning, he looked happy.

Yesterday, Pierce wore his second favorite teams colors while they were in the super bowl and sure enough, he gave them the strength that they needed to blow out the Denver Broncos. "Yay Seahawks" is how he responded when he heard the news. "That defense is a powerhouse. Peyton had no chance" was how he finished off his comment. He might be a sportscaster one day.

The most exciting and scary thing though is that it looks like the hospital is planning on releasing him on Wednesday. So now we are in the mad rush to get everything set to bring him home. Yesterday I was putting together a new armoire because we need space to keep all him medical supplies. We have realized that having everything in a 'central supply' is a good idea and just keeping what we need nearby will be important, so I am putting together boxes to keep under his crib and this beautiful armoire. We will be ready for his homecoming.

Trach care and tie change

Here is what we have to do once a day, clean and care of the trach site and Pierce's neck and replace the ties (the blue things that hold the trach in place). By the way, he is asleep, not knocked out. Yes, he just sleeps through it. Quite amazing if you ask me.

For those of you that might be squeamish, you may not want to watch.

Pierce - Age: 1 month, 27 days

Has it really been a week since I have posted??? Holy goodness. I have been slacking. Sorry to all out there who read this blog regularly. I am sure that you are on pins and needles. I have a lot of updates for you.

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.

Pierce - Suction

So, the other day, I had the opportunity to suction Pierce's trach and have done it a few more times since then. The second time, I video taped it. Below is how it went:

Spit? Nah...we've moved on...

For a while there all Nicole and I were talking about was spit. How he could breathe with it...whether or not he could swallow it...if it was thick or thin.

Well, we have moved on...to boogers. Yes, boogers. Earlier tonight Nicole heard something from Pierce. She wasn't sure what it was. Thought maybe he was about to throw up...or poop. Nope. Neither of those happened. About an hour later I was suctioning out his trach cause he sounded junky in his lungs. When the vent tube was removed, Nicole noticed something inside. "What is that?" She said. Upon closer inspection, it looked like a little booger.

At that point the light came on and we high fived. Why you ask? Well, we determined that he must have coughed out that booger. Something he hasn't done yet but it's a good sign that he is learning how to work with his trach.

So, from spit to boogers. Who woulda thought?

Pierce - Age: 1 month, 20 days old

Alright, so I have not updated in a while. There is a lot to discuss, but I will try and make it somewhat short. First off a few days ago I got to suction Pierce for the first time. It was nerve wracking, but worth it cause I am going to have to do it going forward. Then Monday, after having watched him for almost a week, the doctors looked at his blood gases and hematicrit (sp?) And determined that he would need blood, so that night they got home set up with a transfusion. He had looked fairly pale and then when we came in the next day, he looked pink. Positive results.

Then yesterday, he first trach change...630 a.m. Nicole was here, I was not. The doctors said that his trach looked good. There was a little raw skin at the stoma site, but over all it looked good. And they changed it out.

All is going well right now. They have taken him off the versed...that happened this morning, and they are weaning him off the morphine. This is all positive news and we cannot wait for him to come home.

Some pictures over their last few days are below.