I woke up this morning as you would expect any father in our position. Not really a gradual wake up by any means. As soon as consciousness arrived, my mind quickly started running through the events of the day. I lay in bed for a little while and waved into and out of prayers for my baby girl. Eventually, I decided it was time to get a move on and jump in the shower. Shortly after I started the super hot water, I heard Mandi’s shower turn on. I was a little surprised to hear her up so early. I finished getting ready and then had a chance to talk with Mandi. She told me that the NICU had called and wanted to move the surgery up from 1:00pm to 10:00am. Well, this started to put a little sense of urgency for the Frame family. Then, Mandi got another call and they said the plan was to move the surgery up to 9:00am. Now we were in super urgency mode. The little Claire Bear continues to add surprises for her parents. We got ready and headed to the hospital. A different nurse did call again and let us know that they would not take her to the OR until we got to see her. I was a little afraid of the traffic as we were headed to Columbus during the heart of rush hour. Luckily, traffic was not too bad and we made it to the hospital to spend some quality time with the little one. I would clearly define this time as very joyful, yet a nervous tension in the air. Knowing that your little girl will have a knife touch her skin in a very short amount of time is pretty horrible. Mandi and I soaked every minute of this time before she left us and headed into the operating room. Everyone was so nice and provided a comforting atmosphere. Now the waiting…
We made camp in the family waiting area and where we were met with a crew of individuals to keep our minds from wondering too far (Al and Cody from DCC, Karen, Kandy, Heather and big brother Colton). Our conversations did vary and every so often we would get an update from the nurse on the procedure. All of us played with Colton and he did bring the crowd to laughter a few times. In fact, two other people sitting close to us chose to sit elsewhere because we must have been too much for them.
I was the first to see Dr. Galantowicz approaching. I tried my best to read the body language upon his arrival to get any indication as to the prognosis. I kind of pride myself at being able to read this nonverbal tool. Unfortunately, this was not the case today. My gut feeling was that he was going to give us great news, but how well do I know him. Could he be masking any negative comments that might be shared? Luckily, my gut feeling was correct and he shared that Claire was doing well. He said the procedure went as planned and she was already extubated and off the ventilator. I was impressed. We were happy to quickly share this news via facebook, texts, and phone messages.
We went to lunch with Karen, Kandy, Heather, and Colton then headed to the playground to hang out with Colton on this wonderful sunny day. It was a good relief.
After the designated time, we decided to head up and check on Claire. She had been moved to the Cardiac ICU. I am not really sure how to explain this next section. Lets just say that my perspective of doing good and the doctor’s were a little different. She did look quite pale to me and I did not like the chest tube at all. But all the doctors and nurses who deal with little cardiac babies said she was doing pretty well.
According to the title, you should be able to tell that we have had difficulty keeping little Miss Claire pain free. Man does she have her mom’s temper (don’t tell Mandi I said that). We learned from the last CT scan and sedation that she is extremely sensitive to fentnyl pain meds. If she has too much, she will have apneic periods; if she does not have enough she screams. Not fun either way. This is a case where we need the happy medium.
We are hoping for a relaxing evening.
We appreciate your thoughts and prayers.
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