Thursday morning started off pretty rough for mommy. She had a pretty bad feeling but assumed it was just because she was a little nervous about your big move out of the ICU. With some words of encouragement over the phone from your daddy I headed to the hospital and geared up for the day. You were resting peacefully when I walked in and the nurse said you had a pretty quiet night. The doctors rounded on you early and were joined by your new doctors as part of the "hand off." Rounds ended with Dr. Marino hugging mommy and saying he was really excited for you but kind of sad for himself because he was going to miss his little buddy. Mommy and several of the team members got a little teary eyed. As usual Grandma was here to help mommy and we packed up all your goodies and waited for the green light.
Within five minutes you were red faced and not happy. Your heart rate started climbing and we all assumed this was a Connor fit. Some the nurses even joked it was your way of rebelling against the move. However it felt like a little more than a fit. Lately mommy has gotten pretty good at finding out why you are upset (and to your credit there is usually a reason) and fixing it. It may take a little while but between mommy, daddy, grandma, the nurses and the respiratory therapists and we are typically able to settle things down and move on with your day. Thursday that wasn't the case. Mommy tried EVERYTHING including some of your favorite medicine. It was about time to move when mommy really felt like something was wrong and got pretty worried. The nurses could tell I was upset and went to get Dr. Marino.
Dr. Marino is a great guy and ordered some tests to check everything out before you made your grand exit. He said he wasn't too worried but wanted to make sure you were in tip top shape (and to be honest I think he wanted to help mommy feel better). Turns out your belly x-ray showed what looked like a possible blockage. Your little heart rate stayed up decently high the rest of the afternoon even when you were sleeping. Mommy went downstairs to take a little break with her good friend Steph and daddy decided to give you a bath. Shortly into your routine of a bath, g-tube care, and trach care things started moving and you filled your diaper. Daddy said you were instantly a happy man and your heart rate dropped back down within minutes. You were smiling and playing and the follow-up x-ray showed all was well in your belly.
Mommy and daddy went to bed Thursday night thinking we were in the clear and would probably be moving on Friday. Friday morning mommy arrived at the hospital as usual and Dr. Marino met me in your room almost instantly. He said the morning x-ray showed what could be some air in your intestines (the fancy word for that is pneumotosis). He wasn't convinced that it was truly the case (in fact he felt very strongly that it wasn't) but the radiologist said she couldn't rule it out so on the report it went. By reporting that they have to follow a protocol that includes holding your feeds for a week and give you antibiotics. That means no move to the TCC (transitional care center) and no milkshakes for you. Big time bummer.
Friday went off without much activity and I think everyone was ok with that. You were happy, calm and full of smiles. Several of your favorite nurses and therapists stopped by to say they were glad to see you but sorry we weren't able to move forward. Grandma helped give you a good scrub down before she headed out for the day and you were quiet enough at night that mommy and daddy were able to go have some dinner with Uncle Scooter and Auntie Beth. We will certainly chalk Friday up as a good day.
Today on the other hand hasn't been your best day. You have been pretty upset and your little heart rate pumping away. You haven't been exactly mad since early this morning but you can't seem to be still for more than a minute. We thought for sure that after Pappaw played with you and Auntie Beth gave you a quick bath that you would crash but as usual you proved us wrong. After being awake and moving for almost all of the past seven hours Dr. Marino said enough already and gave you an extra dose of medicine. Being the stubborn boy you are it barely slowed you down so that's right he gave you another. Believe it or not that didn't do the trick so he threw a third one your way. I hate to see you get all that medicine but I know that your heart rate needs to slow down and you desperately need some rest. Things are finally starting to settle out now and I imagine that you are on your way to a long visit in sleepy town.
As much as we want you to move forward and out of the ICU we are very thankful that if you were going to have troubles it happened here where the doctors know you like the back of their hands. We feel very blessed to be surrounded by such amazing people who are so invested in our little boy. There is a saying that mommy and daddy have been using for a while but it's become pretty mainstream here in the ICU after this week. It's called "Connor Time." We will move forward, out of ICU, down to TCC, and eventually home all in "Connor Time." Rest now little man, you deserve it. I pray you have lots of peaceful dreams and recoup from whatever has been troubling you all day.
Here's a picture of you from earlier today
A cute one from the other day
Mommy and daddy love you more than ever.
XOXO
-Mommy
1 comment:
Hope you are feeling better soon, Connor! You are sure keeping your mommy and daddy on their toes :) Josh and Nikki, I'm sorry to hear of these recent set backs. It is so hard to watch your child struggle. I remember how scary and difficult it was watching Ronan come off the vent after his heart surgery. Sending lots of positive thoughts and prayers for you and your little guy!
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