Yesterday morning Henry got up around 7 but we didn’t have to leave the house until 10 so he got a lot of running around the house time. We also let him take one last bath since he’ll be on showers only for a few weeks. He was a happy camper and was in a good mood the whole morning. We loaded up the van (who knew we needed so much stuff for a short hospital stay!) and headed into the city. (We being Beth, Eddie, Henry, Grandma Pat Pat, Grandpa, Ding Dong, and Grandad.) We got to the hospital around 10:40 so he had time to run up and down the ramp in the lobby, which is his favorite thing! A little bit before 11 he said “bye-bye” to the grandparents and we headed up to the surgery floor.
Henry was thrilled to be in the waiting room as it had a plethora of fun toys, including two cars to drive and bubbles! He got checked in and changed into his tiger scrubs, which were so big that they looked like he was wearing Hammer Pants! We then waiting for a long time in the waiting room since Henry’s surgeon was in another surgery and then they had to prep the OR for him.
Once they were ready we got to go into a little room where Henry got to watch TV and have some “happy juice” to make him calm and sleepy. When it was time we got to put in some fun scrubs, hairnet and masks and go with Henry into the ER to be put under.
Here is Henry right after his "happy juice":
By this time he was a little loopy from the “happy juice”. The gas they used to put him under had a cherry scent and he kept trying to licking the mask, which was hilarious. It didn’t take him long to fall asleep at all. Once he was out we left him and headed up to waiting room with the grandparents. (Beth’s note: I was much more calm and okay than I thought I would be. I didn’t even cry when we left him!)
We thought that the procedure and recovery wouldn’t take long but we were wrong. It ended up being about two and a half hours before we were able to see him. We were told what elevator he would be coming out of, but didn’t realize the elevator opened on the front and the back and we missed him coming on the floor and when Beth’s dad asked he was already up in his room and we were able to go in. We spent a little bit of time with the two of us with him. When we got to the room he was still in the big transport bed, had on the full oxygen mask and lots of tubes/wires and looked really tiny. He hadn’t really come to from the anesthesia until we got there so we were the first people he saw when he woke up. Beth got to hold him while they changed out the big bed for a crib and then we put him back down for a nap. Beth’s parents come in for a few minutes, followed by Eddie’s parents and then we all hung out some more.
From 4-10 we mostly just hung out with him while he was in the crib. He was awake on and off, managed to have some juice but was most content when he was asleep. His surgeon and his electrocardiologist came by to check on him and both reiterated that the surgery went well. They were able to place the pacemaker with only one incision, which they didn’t think they’d be able to do. (His surgeon was pleased about this but did note that it meant less cool scars for Henry to impress the ladies with later!) Karen, Mike, Ellen and Meredith joined around 6 to spend some time with Henry and with us. We took turns going to grab a bit to eat and split the group between his room and the waiting area.
During the course of the evening the nurses kept checking his diaper to check for urine but didn’t feel any. Apparently it is common for little ones to “forget” how to go to the bathroom after they’ve been under. Henry was one of those kids. As it got closer to 9 it became more evident that he was very uncomfortable while awake because he wasn’t able to go to the bathroom. The nurses tried pouring water from one container to another, putting his hand in the water to splash around and washing him with a warm cloth- but no luck. The first catheter wouldn’t take and so they switched to a smaller size which needed to be run 3-4 times before finally taking and giving Henry some much needed relief. (He had been holding in an impressive amount of urine!)
By the time this was done, everyone except Beth’s parents had headed home. They took up residence in the waiting area for the night and we crammed into the tiny window-side sleeping area. (It was cramped but had an amazing view of the city!) Henry slept from 10-12, was up for about 30 minutes and then slept until 7 this morning. He slept through the alarm that went off once an hour when the medicine ran out. We would wake up, watch the nurse change things out and then fall back asleep for 45 minutes before being woken again. Beth is confident they should be able to set the alarm to only ring outside the room- that would have been nice. The only good part of waking up every hour during the night was rolling over and looking out the window of the city at night. The clouds cleared up and it was a really beautiful sight. We noticed that they don’t keep the Empire State Building lit all night, which probably save them a bundle on their electricity bill!
Here is a bad cell phone photo Beth took this morning of the view:
Henry was a bit more himself at 7 am when he woke up. Over the course of a few hours he was taken off his pain IV and the catheter was removed. The doctors did some testing of the pacemaker which went well and then they did some general examination type stuff. We got Henry to have some sips of apple juice, a few bites of yogurt and a couple of ounces of milk. He read some books and provided the animal sounds he loves to do and that made us smile. He got especially excited about a new book that Meredith had brought him that had jungle animals driving a jeep!
Here is Henry relaxing this morning with what we've been calling his "bad spray tan" (the leftover stain from the iodine they cleaned him with before surgery):
We found out from the doctors that because of the chest tube and some antibiotics he still needs via IV, he’ll have to be here at least another night. Unfortunately we will be moved to the 6th floor at some point during the day and would lose much of the amazing view we had of the Hudson and midtown Manhattan.
Around 9:30 he was getting fussy with the milk and up came the milk, yogurt and juice he had during the morning. He was covered in it (and still smells bad a few hours later!) so when he got cleaned up we used it as an excuse to move him into the rocking chair with Eddie for a bit and then to Beth and then after he fell asleep we moved him back to the crib where he is as of now (11:00 am Tuesday).
We are thankful that our families and friends can be here to support us and those that aren’t here support us electronically on Facebook, email and text message. We feel so lucky to have such amazing and thoughtful friends. Being on this floor (cardiology ICU) with so many very sick kids really brings Henry’s situation into perspective. Sure we’d rather him not go through this and have to deal with a pacemaker for the rest of his life…but it could be much worse.
We will post again when we have more updates.