Friday, January 31, 2014

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.

Wednesday, January 29, 2014

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.

Wednesday, January 22, 2014

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 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.

Saturday, January 18, 2014

Pierce - Age: 1 month, 16 days

So it has been a couple of days since I have posted and the main reason for that is because there really has been no change. He is sedated and on the ventilator till Tuesday when the surgeons do his first trach change.

Yesterday we got our first in depth trach class where we practiced on a doll and learned all about it. That was helpful and I think, although it will be difficult, it's not as fragile as I originally thought. Don't get me wrong, it is fragile and certainly requires a close watch and some special care, but overall, it looks like kids can have a very healthy productive life with one...that is if he even needs it that long, which I doubt. So now begins our practicing and slowly introducing us to taking care of it on Pierce. This will be nerve wracking and interesting. I will suction him for the first time today at his 4 o'clock cares. I'll let you all know how it goes.

Here is a picture of him today, all peaceful and hanging out.

Earlier he did sign a message for me to pass on to everyone. "Go 49ers. Stomp those sea chickens." I was shocked that he knew all that and could sign it while under sedation, but he is a tough little booger. And I concur.

Have a great weekend. I know we all will.

Tuesday, January 14, 2014

UPDATE: Pierce - Age: 1 month 13 days

Pierce has undergone his trachiostomy surgery and everything went well. The surgeon said that he did great and then we got the chance to see him. I know the picture looks bad, but Pierce is comfortable because he it's sedated. He has to stay in the below position for the next week until they change the trach for the first time. All in all a good but tough day.

Pierce - Age: 1 month, 13 days

Today is surgery day. He will be getting his trach done soon. We are currently just waiting for the call from surgery. Nicole is holding him and he is happy and calm right now. If course we are nervous and scared, but I think that we will be relieved when it is all done because he should be able to breath easier and not have to work as hard. Then he should be able to focus on the other things that a baby does. Here's mom and soon before surgery and dad playing with him last night, and this morning while he is sound asleep. I will send an update after surgery is done.

Monday, January 13, 2014

Pierce - Age: 1 month, 12 days

All, after much work, reflection and conversations with doctors, Nicole and I have come to the conclusion that the best and most fair way to give Pierce the chance to breathe and develop without concern, is to move forward with a trachiostomy. At this time, surgery is scheduled for tomorrow at two pm.

This has been a tough and emotional rollercoaster but we think this is the best for Pierce, putting our emotions aside.

Friday, January 10, 2014

Tuesday, January 7, 2014

UPDATE: Pierce - Age: 1 month, 5 days

Text between Nicole and me earlier today:

Nicole- He looks so good Ben seriously...
Ben- Picture?
Nicole- 'sends picture which is dark and hard to see, but I can tell he's sleeping'
Ben- Look at that. Sound asleep. Would you say he is sleeping better now that the cannula is out?
Nicole- I'm sure he is
Nicole- He was hanging out being a baby before. It was amazing.
Nicole- And he is not gurgling or pooling spit so...
Nicole- I think we should give him a week before back trials and then sleep study.
Nicole- He should just learn to do this long term
Nicole- I love pandora one
Ben- So is the spit coming out of his mouth or does it look like he is swallowing it maybe
Nicole- It's not coming out of his mouth
Ben- And you're not suctioning?
Nicole- I did some suctioning yes.
Ben- Did you get a lot out or a little?
Nicole- But it's not on the pillow and he's not choking and it's not a huge amount
Nicole- There is some but not huge
***and on it continues***

That is what our conversations are now like...talking about spit. Ha! Who would've thought that spit would be big on our agenda? Yet here we are. It all comes down to spit. 

Pierce - Age: 1 month, 5 days

All has been about the same since the last post, except for yesterday. We had a family meeting with all the specialists and our new NICU attending. After discussing all the various reasons why a tracheostomy would be a good idea, I asked about taking of the Cannula and the vapotherm. The NICU attending, Dr. Barahmi (sp?) Thought that was a fine idea. He said he could only get better, worse or stay the same but the NICU is the safe place to do it. So.... yesterday we took it off. He had been off for about 12 hours and has been doing well. About the same as before, but it had only been 12 hours. This is positive. He really may not have needed the support, which is what I have been saying. We are hopeful he will get better and learn how to swallow. For now, we will just watch him and see how he does. So far so good. Some pictures are below.

Go Pierce!