I’ve found it very difficult to write about Declan’s surgery aftermath, but I’ve realized I’ve put this off for almost a year. Here are the snippets I wrote on my private blog leading into his surgery day and what happened after.
Today was another tough day for Colby and I. We learned Declan will be going to surgery on Thursday and he had to be intubated. The Prostin he is on was causing him too much respiratory distress, causing his body to work harder than it should, which they don’t want before a major surgery.
Before they intubated him, I wanted to hold him one last time. I raced up there (not literally because we have one of those State Farm beacons to get a “good driver” discount ) and I got to hold him for about 20 minutes before they intubated him. My poor baby was labored in his breathing and although it was difficult, I knew intubation was the best thing for him. As soon as they intubated him, his sats went way up and for once, he looked comfortable and peaceful.
It’s hard to watch your baby struggle. I cried pretty much the whole time I held him, not because I was or am scared for him, but because I hate to see him struggling; because I hate knowing I can’t hold him to comfort him again for possibly another week; because I would give anything to take his place.
If all goes well with his surgery and eating after surgery, he should be able to come home next week-ish (7-10 days). Of course, we’ll be nut jobs over every single noise and move he makes because you are pretty sure he’s ok, but you’re scared because you’re not at the hospital in case something is wrong… we won’t sleep because we’ll be checking on him all night and watching him all day… but we will adjust.
I look back and read that and think, “Man… hind site is 20/20. It would be over a month from then that he would get to come home and what happened in between was nothing short of horrifying and a miracle.
Surgery day came. We were up at the hospital early. If I recall correctly, I believe Colby spent the night at the hospital the night before and I came up that morning. My dad, little brother, and best friend took shifts staying with our other kids that day. My mom would have been there but she had her own son’s cancer therapy appointment in Miami to attend. It broke her to not be there, but as I said to her. I will be here with my son. You go be there with yours.
The day was, thankfully, uneventful. His surgery was a success. He did so well, they were even able to close his chest after surgery, which they normally can’t do due to swelling and such.
The rest of the story leads into the worst day of our lives. Here’s my post from my private blog below. Keep in mind, I was sleeping at home while Colby slept at the hospital. I was still recovering from my c section so I didn’t want to get any hospital born infections being so fresh from my surgery.
I went to bed shortly after 1am this morning. Around 1:30am, I noticed a bright light through my eyelids and I opened my eyes to see my phone screen shining bright. I rolled over and looked at it. I had a text and a missed call from Colby, so I knew it wasn’t good. Declan had had an episode of desaturating, which is the very thing the shunt should have relieved/shouldn’t have happened. He apparently got upset about something, so they attributed it to that. His sats dropped into the 50’s. Around 4am this morning, it did the same thing, but so acute it dropped into the teens. They tried to bag him but couldn’t due to his pulmonary vaso restriction. I was awoken to a call from Colby at 6:30 this morning saying that he had to be re-opened bed side to unclip his PDA to get oxygenated blood to his body.
I got ready, pumped and left to come up here. Meagan had stayed the night so, luckily, someone was there with the girls. I got up here and they had gotten him stable and his open chest was dressed so he was kept sterile and such.
About mid morning, he was taken to the cath lab to see what was going on. They found the shunt was almost purse stringed on the area that is connected to the pulmonary artery, which is constricting the flow. The shunt is 3.5mm and Dr. Shillingford believes that area was narrowed to about 1mm, which is not sufficient, so they are taking him back to the OR right now to go in and take a look at the shunt and either 1) fix the purse stringing of the shunt or 2) replace the shunt with a 4mm and then reclip the PDA. So basically we are back to the same place we were at yesterday before the surgery.
Declan is being put on life support to give his heart a rest. He developed a lethal arrhythmia called vFib that, had he not already been open on the table, he could have very easily died from, but because they could literally hold his heart in their hands, they were able to give CPR directly to the heart and give him electrical stimulation to get the heart beating again instead of quivering. They just took his new bed to the OR, so I imagine they’ll be bringing him back up soon. I just can’t leave yet knowing he was circling the drain. And when the cardiologist came in, who we very much like, he forgot to lead with “Declan is ok and still alive” so as he spoke, my heart sank and I felt like I was losing my breath but trying to hang on long enough to hear what he was saying. Eventually I stopped him mid sentence and asked if Declan died.
Here is the update on Declan. First, he’s alive and stable, so let’s just get that out of the way. As I mentioned earlier, he went to the cath lab where they found a narrowing at the base of the shunt where it connects to the pulmonary artery. They took him to the OR this afternoon and he’s been in surgery for 5 hours. During surgery, he massively desaturated. He desaturated because there was too much blood with not enough pressure going through both the PDA that they had unclipped and the shunt. As a result, he went into vFib, where the heart quivers instead of of beating, which is a life threatening rhythm. Basically, the coronary arteries, that supply the heart with its own blood to function, were not getting sufficient oxygen for a period of time. They had to do 18 minutes of resuscitation, which is where they had to perform CPR and manually massage the heart to keep blood flowing. He was intubated with oxygen the whole time, so while there is a chance for brain damage, they feel he has good chances in not having brain damage. Only time will tell if there are any issues from this. The biggest thing will be to see when he wakes up if his pupils are equal and reactive. They hadn’t even started when this happened. Of all of the places to be when this happened, he was already in the OR which is the best spot because they could directly access the heart.
Because of this, they had to put him on bypass to get him stable and put clips on the shunt to stop the free flow of so much blood and get the pressure back up. Thus, the focus is now to get his heart working properly instead of just dealing with a blue/red blood situation. They also had to cool his body to reduce the demand on his heart from his brain.
He is being brought back from the OR on life support called TandemHeart VAD (ventricular assist device). The heart is currently beating on its own, but this machine takes the load off of his heart and lungs and will allow them to rest. He will be on this for, likely, 48 hours before they’ll do an echo to see if his heart function is back.
As I re-read what I posted above, I realize there are details I’d forgotten that continue to devastate me. I have my happy, sweet Declan next to me playing with a ball on the floor and I’m literally in tears because I had forgotten that they had to cool his body to preserve his heart and brain. You never imagine your child in this situation, much less imagine them blue/purple, cooled to where they don’t even look alive, chest open, on some table somewhere. My heart continues to grieve and I don’t know why. He’s here. He’s happy. He’s perfect. He won’t remember any of it. So why am I so sad?