Tuesday, March 5
Cody had a good night. No fever and he slept well! The larger diapers seem to be working well.
When I called this morning to check on Cody it was an hour earlier than I thought. His nurse had just come on shift a half-hour before. Cody was having a good morning, and she reviewed his night with me.
Coco was asleep when I got in, but not for long. He had spiked another fever this morning. The cooling blanket machine was at the foot of his bed and some cool packs on Cody. The actual cooling blanket was not in his bed, thankfully. His Nurse was being proactive by bringing in the cooling machine in case his fever did not break. Thankfully his fever did break.
When he woke up, I got to see his sweet big smiles and he reached out for a hug! It breaks my heart that he continues to have fevers. I'm sure it's not an infection, but I still worry because this is like how his pneumonia started. I do believe these are cardiac fevers though. Cody seems to spike when he gets worked up or is more active. Yesterday I thought I wrote that he hasn't been to cath since November 29th. All day I was thinking that couldn't be right. It wasn't. Cody went to cath soon after his open heart. His last cath was seven weeks ago. That's an improvement though! We used to be lucky that we made it to five weeks.
Coco's next catheter dilation and diagnostic pressure readings are happening on Thursday. There was a possibility of going tomorrow, but the schedule in the cath lab didn't allow that to happen. It's only one day. I do think Cody will be okay. He's the second case of the day! That's good!!! Unfortunately, his regular catheter Doctor isn't available Thursday so Cody will be the Director of the cardiac catheter program. I'm sure he's wonderful and will take care of Cody, but I'll be worried. Dr. Quinn knows Cody so well and knows his little quirks. I know he has already briefed the other Doctor, I Know Cody will do well, and I know I must trust this new person. Cody's regular Doctor was a new Doctor once too. I'm still going to be nervous. Benny will be able to come down for Coco's procedure and will be here for the results before heading home for work on Friday.
Most of this morning and early afternoon Cody was in and out of sleep. I know his fevers take a lot out of him; that's Pulmonary Hypertension. When he was awake, he was happy and playful! He Loves his Whaley and his teether right now. Cody also loves different textures and holding things. That would all be great if Sneaky McGee wasn't clever. Coco has figured out how to drop/ toss his teether and hold onto his breathing tubes! He has never pulled on it, but I don't want him to get tangled in his tubes and self-extubate. I've started to introduce sensory books into his story time. He has a couple of touch-and-feel books and a couple of sensory/ interactive activity toys. Those seem to help keep him busy too.
We had a special mid-day treat and got to video chat with Daddy while he was on his lunch break! We always video chat through Facebook Messenger and tried Google video today. Ben called during the big Facebook outage. Google worked very well, and the picture quality seemed better. Ben's video was on screen before I accepted his call, so I showed Cody. I didn't even have to tell him Daddy was calling. He was SO excited to see him!! He smiles his biggest most joy filled smiles and gets so excited!!! I Love to see how much he loves his Daddy!
Just before I went to lunch, I learned that it was his Nurse's last day. Not just with us, but her last day at Children's. She and her husband bought a house in Western Massachusetts to be closer to family. She has been one of Cody's primaries this admission. I wanted to get her something special from Cody. Something to say, “thank you for loving me, caring for me, and advocating for me”. Especially during the most terrifying days. I looked through both gift shops, Children's and Brigham's. There were a lot of sweet things and some beautiful pieces of jewelry and trinkets, but nothing seemed special. I walked over to CVS for a card and to see if I could print a photo, but that also didn't work out. The cards were too generic. Nothing was right. When I got back from my lunch, Coco's nurse was on her lunch break. I used that opportunity to make her a card from Coco. I have an ink pad that is specifically made for hand/footprint crafts, and I have some watercolor paper. Coco and Momma made a card! I still owe her a photo. When she came in to do Cody's cares I was still writing my note! When I finished, I waited for her to turn to her computer in Cody's room and I put it on her desk. Coco made her a footprint heart. He only has one foot available at the moment since his art line is in the other, but we made it work.
Around that same time, I was getting messages and texts about Coco's story on the news. I just watched it before typing this. It was nice. There was one mistake about the dates of being home, but overall, it was good. It was hard to watch. Cody was JUST getting over pneumonia and tracheitis when she interviewed us, so everything was still fresh. I cried a lot during that interview. The times I was looking away were because I was trying not to blink and let the tears roll down. I was worried about putting Cody's story out there. It's one thing to say it all to family, but to have out in the world is hard. Vivien Leigh was so kind and easy to talk to. It was like catching up with an old friend. There was a lot of information and we had some technical difficulties on our end during the interview, but it was put together really well.
I talked to my Mom this afternoon too. She called after the first airing of Cody's story. I had her on speaker phone and Cody kept reaching out to my phone. He knows Grandma's voice! I put her photo on the screen and grabbed my phone, pushed it to the side, looked at me, then reached for the phone again. He did that yesterday with Ben! I swear he's looking for whomever is on the phone! He makes me laugh!!
We video called Daddy a little early because he also wanted to say goodbye and thank you to "Auntie" Emily, Cody's nurse. It was emotional for us all. She really has loved Cody as if he were her own. After our goodbyes, Cody was in rare form for Daddy tonight! He was just so silly and excited! It was as if he hadn't talked to Daddy for days, not just a few hours!!!! We really enjoyed our family time, as unconventional as it is right now. Cody fell asleep while talking to Daddy and was down for the night.
Tonight's nurse is one we had in the ACCU/ Accute Cardiac Care, aka the Step Down Unit. She splits her time between both units equally and is on Cody's team. He knows her very well and was also happy to see her. Even Daddy got to say hello!
After Cody was tucked in and asleep, I left a bit early; just after 9:00. There has been some difficulty with the shuttle from 10 to 11 pm. There hasn't been a driver available for the third shift. I thought if I left a bit earlier, I wouldn't have that issue. Walking down the hall I saw the Husband of a couple I occasionally talk with at night. His wife was staying, and he was heading back to housing, but taking the shuttle because it's raining here. When we got on the shuttle a second Father go on and he was also going to our building! It never happens that we get to go to our building first! What a nice treat! The shuttle driver is one Ben and I have known for a while. He is so kind and such an inspiration. He also had and recovered from a rare form of cancer that I've only heard of because my Sister's Sister-in-Law beat that cancer as well!! Today was long and I was having some anxieties about Coco's cath, but just seeing our shuttle driver friend makes me feel better. He made sure to tell each one of us that he would say a prayer for our child. He is exactly the right person you want driving you home after a long day. Even if it is only a mile.
Thank You All for your Love and Prayers for our Little Family. Your Support is so appreciated!!
Love Always
Ben, Taryn, and Cody
