Our first day in Boston started pretty early. We had to be at admitting at 7:30 am. C slept as we got ready and was still sleeping as we carried him out of the house. We walked from the Yawkey Family Inn up to Boston Children's and arrived by 7:20 or so. C had to fast. No solid food after 4:30 am, no breastmilk after 8:30am and no water after 10:30am. Admitting went very quickly and easily, they are very efficient. Then we moved up to Cardiac pre-op. This was basically a waiting area where we filled out some forms and then various people came and took us to cover each of the aspects of our pre-op testing. They keep a checklist for each patient on a white board and can easily tell what things have been done and what activities will occur that day.
We started with a chest X-Ray, while we waited for the radiologist, I took a moment to breastfeed C. When the tech arrived, we headed into X-Ray which led to a lot of tears and a really quick X-Ray. C had a very nice woman hold his arms above his head and his head very still so we could get some clear pictures of his very wiggly torso. Then, we went back to the waiting room so quality control could confirm the X-Rays were good. While we waited, I breastfed again as the click ticked toward 8:30.
After X-Ray we went over to a cardiac pre-op consultation room where one of the cardiac surgery fellows came over and talked through what surgery they are planning on Wednesday, what the risks are and what they expect to happen. The biggest point of note is that they expect 24-48 hours on the vent, 4-5 days in the CICU and another 5-6 days on the floor. They also talked about the risks and possible outcomes. The off chance that he'll need a valve replacement, pace maker or other interventions were mentioned. It was certainly nerve wracking, but it was much more thorough and detailed than the information we received before the last surgery. Once that lovely talk was done and the consent forms were signed, we wandered back to pre-op. Where they sent us on to the labs
At the lab they drew three vials of blood, which caused C to whimper a bit. Then, when they were done, after they'd slowed the bleeding, they put on a band aid, which led to a complete and total meltdown. We had to keep a hand covering the band aid to get him through the 10 minutes until we could remove it. I was surprised they didn't get a urine sample, we had one last time.
We then talked with someone from cardiac anesthesiology. He was also very reassuring and very thorough. This was at around 10:20 so I was giving C his last drink of water. I asked what I'm sure is a very typical question ever since the 60 minutes special on waking during anesthesia. They said they were very sure he'd be asleep and wouldn't remember anything (I think I asked the same question last time, but the very thought of him waking on the table terrifies me). We got through all the scary details and signed yet another consent form. Then we went back to the pre-op waiting room.
Next, a very kind woman came and took us to do vitals. We got a weight, pulse ox, blood pressure and height. We discussed the EKG and determined that the number of stickers involved meant it might be wise to get it done during his sedated echo at 1pm. So we headed back to the pre-op waiting room.
After a few moments, we were lead back into the cardiac pre-op area where 2 different people came by to talk about various studies that were being conducted. We consented to join all the different studies because knowledge is power and anything we can do to help other people in our same boat we want to do. Then we went back to the pre-op waiting room.
It was about 11:15 and C had now been without food or liquid for what he thought was a VERY long time. He began asking for "milks, mama, milks" repeatedly. We distracted him as much as we could, then it was time for the CICU/Floor tour. The Child Life specialist met us on the 8th floor and showed us the CICU. They were doing rounds, so we couldn't go look around. We got a brief overview of what the rooms were like, but they were all occupied so we couldn't go in. We did find out that we'd be able to use cell phones while sitting on the parental sleeping area and that any of the CICU rooms could act as an OR in an emergency. We then headed over to the floor where all rooms are shared and there are no cell phones allowed at all. We got a brief look at a room, but things were pretty hectic all over so we headed back down toward cardiac pre-op. It was actually break time and they had suggested we head out to a garden and walk around a bit.
However, on the elevator we ran into Dr. Marx. I said hi and that we'd be seeing him later today and he burst out "Oh! The Panus Family! How delightful :) I could talk with you some now, do you have time? I have time!" So off we went following Dr. Marx as he headed off to find us a place to chat. We went over what the thought was going on with the cleft, what they thought would be the path to repair and what they thought the odds were of having to do more after this. He hadn't seen the echo or EKG yet as they hadn't been done, but he was confident they had seen enough to make a preliminary judgement based off the studies we sent up from Mercy. After a detailed explanation of how the common valve is formed and how it tends to be repaired, we dove into what the repair would probably entail. All in all a delightful and informative visit. He did mention that C's heart was very enlarged and that it was good to do this surgery now for a number of reasons, not the least of which being we can get that heart to decrease in size again. This is completely different than what we'd been told before (not to worry about the size of his heart unless it was as big as an adults). Dr. Marx believes this may be the last surgery we'll need on that valve.
We headed back inside at about 12:10, we needed to be back to cardiology pre-op by 12:15. A few minutes after we arrived, we were sent up to the 6th floor where they have a cath lab. They also have a couple different rooms for echos. We met up with Maureen who was the nurse who would be monitoring C during our sedated echo. She took another detailed history (Everyone was on the ball and they have an impressive number of rechecks they perform just to be safe). We discussed chloral hydrate and its possible side effects, and the worst news of all, it tasted HORRIBLE.
After everything was checked, double checked and reviewed, it was time to give C the medicine. He took it like a champ. He gagged once and grimaced a bit, but swallowed down the entire dose. We'd been prepared for spitting and gagging, but he just took it all. Then, about 10 mintues later he drifted off to sleep. We ran down for a quick lunch while he was sedated and unlikely to awaken. They spent about 1.5 hours taking over 200 pictures of his heart we were there for the last hour. Then we did a quick EKG and it was time to try to wake him up. I asked if he could have milk, she said no, we'd have to start with water. We tried to get him to drink, but he cried Milk! Milk! he wanted nothing else.
Then we found out one of the pictures on the echo was missing, so we did a quick stand up echo which worked far better than expected and returned to try and get him up and willing to drink. He again asked for milk, she asked what he said and I told her he wanted milk. She said he was really focused on that and asked if he liked milk. I said well, he likes his mom and it is comforting. She said "OH! I forgot you were nursing, I thought he wanted cow milk, but you said he won't drink anything but water and breastmilk. Go ahead and nurse! I'm sorry." So finally, C had his milk and he was once again happy.
While he nursed we discussed when and how he could eat again and how uncoordinated he'd be for the next 6 or so hours. We were dismayed to learn he shouldn't really eat solids until at least 7:15, though he could nurse before then. We were pretty much done by this point (and done in). Dr. Baird had another case come up, so we were not able to meet with him. We'll meet him the morning of surgery. We've spoken several times on the phone and by e-mail and I am comfortable with him. Dr. Marx spoke with us again after removing the echo and he was delighted with the results. The culprit is that cleft, which apparently had its stitches rip out at some point post-operativly. We'll go back in and close the cleft the Boston way and that may be the last surgery we'll need.
We were worried because we needed soft solids that were easy to chew and those generally aren't C's favorite. As of 7, C was still unable to walk without falling and was still pretty loopy. He was also getting very agitated and grumpy! We were incredibly grateful when 7:15 finally arrived. There was no need to be concerned about what C would eat. For once, the answer was whatever we put in front of him and as fast as he could eat it. He ate about a cup of noodles, a container of apples and 1.5 slices of zucchini bread.
TheMan and I ordered Chinese and Thai respectively, it was mediocre, but filling. C crashed shortly after he finished eating and got his medicine. He's still a very loopy baby. A drugged toddler is amusing for about 30 minutes, then he's just pitiful. Poor baby, I hope it is worn off by morning, they say the balance issues can last 24 hours.
This post ended up hugely long, but then, or day was hugely long. My fingers are now as exhausted as my feet, so I think I'll head to bed.