Back to the Cardiac ICU

Being a Heart Mama you always have this thought in the back of your mind that in an emergency situation you could end up back in the ICU. It is a constant worry to be honest. When we were in the interstage period between the two surgeries I had a bag packed in my car just in case because they told us it was very likely to have at least one unexpected hospital stay. Now being post- Glenn, I thought we were in the clear. I was very very wrong.

Ryder has contracted RSV, Rhinovirus, and a bacterial infection. It was very sudden and very, very scary. Watching him this time was easily 100 times worse than watching him go through his surgeries. In less than 24 hours our happy little dude went from playing, giggling, eating normally to sedated on a ventilator in the CICU.

A few days ago he started with a little runny nose, that was accompanied with a lot of drooling. I assumed his upper teeth were going to start coming in. He was fine, no extra indication of illness. Friday night, I suctioned out his nose and ran the vaporizer next to his crib, he slept fine. Saturday he woke up gunky like some post nasal drip was lingering that was causing a little bit of rattling. We went through the day he was acting “normal”. Saturday afternoon I called Children’s cardiology just to be safe and described what I was noticing. He was very rattley sounding like he really needed to cough, but was playing and eating normally. His Oxygen Saturations were lower than normal, his average is mid 80s and he was right above his lowest of 75%. (The “normal” person would be between 90-100% even with illness). The Cardiology fellow recommended we continue do what we were doing of vaporizer, suction and monitoring. I was doing just what was needed at the time and to call back if I feel it necessary. I kept his pulse ox on all night, he fluctuated between 73-77, staying at 75 most of the time. He woke up and ate twice in the middle of the night, this is normal in his routine. At 4 AM he only at 4 ounces instead of 5-6, he also was more restless. Its not uncommon, he gets very gassy after he eats but I could tell he was very uncomfortable. I got him back to bed, but he woke up at 5:30 irritated. I snuggled him, he went back to sleep and woke up again at 6:30 for the day.

Sunday morning, I put him in his high chair to eat solids for breakfast like normal. He tried eating a couple Cheerios but wasn’t interested and was visibly upset. I finished pumping and tried giving him a bottle instead, he also was not interested which is not like him. His temp was 97 so we weren’t concerned about fever at the time either.

I called Children’s again, they suggested Urgent Care closest to us to be safe. We decided to go to Waupaca, on the way there I checked in from my phone making sure they are aware of his heart condition and his oxygen saturations. If you aren’t familiar with heart kids and their anatomy it can be extra scary. About 5 minutes later they called and said the walk in Urgent Care is not going to have what Ryder will need in case he gets worse and to go to the Emergency Room. No problem. Ryder slept almost the whole way there, I tried checking his Sats again in the car but the little piece that wraps around his foot came loose and I couldn’t fix it. He started to get irritated about 15 minutes from the hospital.

At this time I am so absolutely thankful that my older sister lives 10 minutes away from the hospital and was able to pick up Remi. Who was very very spoiled by her aunt and uncle.

We were able to get into the ER right away, Ryder was very irritated with everything. His oxygen Sats were still hovering around 75 but would dip occasionally. We all struggled with getting him to cooperate to put the oxygen nasal cannulas on. He also really hated the nebulizer treatment. He was very worked up and his temp then went up to 100.7. They did a viral swab in his nose to rule out infections. He eventually calmed down and snuggled, but his Sats were still bouncing around. We tried an oxygen mask and that wasn’t helping, went back to the nasal canula but my little buddy was not happy. I had to stand up in the ER snuggling him to make him comfortable. After they did the initial vitals the ER doctor came in and talked to us about his heart and what he’s noticing so far. They then told us that the viral swap came back positive for RSV. The doctor told us they were more comfortable transferring him down to Children’s than to try and treat him there because of his special heart. Knowing what we know now we are extremely thankful for. We were able to get an ambulance fairly quickly. I rode down with Ryder while Tom went home to pack a bag for us and meet me down in Milwaukee.

The ambulance ride was rough. Ryder was very upset to not be in my arms anymore and to be strapped down in a harness on the stretcher. He was very sleepy and started to get a little lethargic. Being his mom, this was the hardest part. I couldn’t do anything to console him, I couldn’t hold him, and I had to watch him get very upset. He also declined very, very fast. The EMT in the back with me was getting worried. By the time we got to the hospital she was fairly frazzled. Ryders temp was up to 101.4 and his heart rate was going up to 200. As I’m writing this he’s at 97 for heart rate to give an idea how high that was.

We were initially given a room on the 5th floor, which is an acute treatment floor rather than the ICU or critical care floor. When we got to the hospital it was an odd experience. There was no one around where we pulled in or any of the areas we had to go through. We eventually made it to the front desk of the newer part of the hospital where we met a security guard who informed us we needed an escort up to the 5th floor. The EMT I was with told them to hurry. The oxygen on her portable tank was running out and Ryders heart rate was still high. We walked FAST through the hospital, the first bank of elevators for transport weren’t working, we had to get off and go through more of the hospital to another bank of elevators. We get into the 5th floor, which looks exactly like the 3rd floor ICU. A ton of people are coming in to do the admission, the nurses, the PICU doctors, the EMTs are still there. They are trying to do an assessment and make sure he’s on the right amount oxygen, start IV all that jazz. But they decide he should be in the ICU. So our admission on the acute floor lasted 10 maybe 20 minutes before we were transferred to the ICU. We again were flooded with people doing assessments to have a treatment plan. His numbers were terrible. He was getting worse by the minute and you could see it. It started to hit me then how helpless and scared I was getting.

Shortly after they did the initial assessment they realized just having the high levels of oxygen was not helping. He was breathing very hard and his numbers were not good. He also was very sleepy which is not like him at all. They considered him in respiratory failure. The best decision for him was to intubate him and put him on the ventilator with higher levels of sedation. As hard as it was to see him sedated, his body needed the rest. Tom got to the hospital when they were putting in the breathing tube. He had a very hard time seeing our happy guy in the state he is now, sedated with a breathing tube.

Before we went to Ronald to get some sleep they decided to give him paralytics to keep him from trying to over breathe on the vent. He was trying to fight the ventilator and working way harder than he needed to. The paralytic is to keep him from fighting his support and to allow the machines to do the work so he can recover. Overnight they continued to watch his Sats, they also were watching his urine output because if he’s not peeing he is putting more fluid on his lungs which would not be helping his situation.

Today we are still just keeping him comfortable with the sedation and paralytics, as well as adjusting settings on his mediations and ventilator to help him best recover. His numbers are okay, they aren’t great but its a lot of tweaking to get them where they need to be to keep him comfortable.

Its going to get worse before it gets better and having been through so much in this ICU I feel better prepared to see him in this sedated state knowing his body needs the rest to fight off the viruses and infection. It totally sucks not being able to snuggle him. I’m very thankful we got here when we did though. It was extremely scary to watch him decline so fast. I will update as much as I can. Right now with his anatomy hes got a ways to go to fight off this illness for sure.

People are asking what we need, and honestly I don’t know. We are just going through the motions of things right now. I’m thankful for the amazing staff down here at Children’s , I’m thankful to have the freedom to be here with him, I’m thankful to my husband for taking care of everything. I’m thankful to my sisters and my mom for helping Remi. We just need to let our little bubba fight off his illnesses and recover. We have no idea how long that will be. Keep Ryder in your thoughts and pray for a good recovery.