What Happened?

Picture of Jen in bed with Timmy about an hour before he passed.

Part of me wants to wait to share anything more, but the other part of me wants to write before I start forgetting. So, what happened?

Timmy had a cough and cold like symptoms a couple of weeks ago. Nothing major, we got him checked and his lings were clear. He recovered, but last week started having more congestion again so we took him in to be seen. The diagnosis was that his lungs were not clear and it was either due to his heart failure (which was Timmy's constant state) worsening or pneumonia. That was last Thursday. He improved on Friday, but on Saturday Jen noticed his eyes were puffier than usual. Sunday morning, his feet were swollen. Swelling in the face and extremities are signs of heart failure. The symptoms that we treated with the medications Timmy was on (diuretics, for example). We called his cardiologist Sunday morning prepared to take off for Rochester. 

His cardiologist, knowing that our desire was caring for him at home, made suggestions as far as increasing a medication and seeing if that helped. We breathed a sigh of relief and figured things would improve based on the recommendation making a lot of sense. They did not. We called again and he suggested that we could see him in the morning, or go to Rochester then or in the morning. We decided to finish of Sunday's responsibilities, but make a "go or no-go" decision at 7:00 after the evening service at church. No improvement was made, so we called the cardiologist again and he told us he would call ahead to Strong's to have them waiting for us. We left shortly after 8.

We arrived around 11 to the ER at Strong's and they began their evaluation and started drawing blood and taking x-rays and asking all the questions to find out what Timmy, who left 2 years ago, was doing. By 4 am we were brought up to the Pediatric Cardiac Care Center - Timmy's home for 2 months a couple of years ago (almost, the PCCC moved to a new location in the hospital, but it still felt like home). We also met with the cardiologist that admitted Timmy 2 years ago in the process. Arriving at the PCCC, we were greeted by Erin, one of Timmy's nurses from his first stay. It really felt like home very quickly.

They worked to get Timmy's vitals and start figuring what to start with. IV fluids were started, more tests run, and monitors were hooked up. Also, by this time, they had Timmy on 6 liters of oxygen flow (at home we had him on 2-2.5 liters) and his oxygen sats were staying on the low side. 

By morning, Timmy was resting a little, and we waited for rounds. at this point, Jen hadn't slept since a small nap Sunday afternoon, and I had gotten a few short naps in through the night. At rounds, they gave a run down of Timmy's condition and what they expected. They were going to give Timmy some valium to help him rest and not be agitated, and it worked well without knocking him out. It looked like things were settling in as they did last time, so I started to work on getting Jen settled by finding out about the Ronald McDonald House and all. We got her moved in in the afternoon, and picked up some food for her while Timmy rested and went back to the hospital. Jen knew the routine, so I headed for home around 5:00 with the promise of a good night's sleep. 

I got home and started getting ready for bed, but got a message from the hospital. I called them to find out Timmy wouldn't settle, even with another dose of valium. So I called Jen and let her know. She had just gotten back to the RMH and showered, ready for bed. She went back to the hospital, and I went to bed, knowing she might be in for a long night, and the best thing I could do was get my rest.

When I woke up and showered Tuesday morning, I checked for messages from Jen. There were 3 messages from overnight. Just updates while things were fresh. They kept turning up Timmy's oxygen, but his sats kept falling. He wasn't sleeping well. Jen wasn't sleeping either. I called, and Jen put on Dr. Powers, who was in the room, to give me an update. So it was time to go back to Rochester. I arrived by 11 Tuesday morning and updates and decisions were made very quickly. Because there was nothing they could do to keep his oxygen sats up, it was clear that we needed to transition to comfort care. By 4:00 pm, Timmy had taken his last breath. Jen and I were beside him in his bed, singing some of his favorite songs and holding his hands. 

His heart just went down hill very quickly. 

Some of the blessings along the way:

If we had waited until Monday morning, we would not have been able to handle transporting Timmy to Rochester, and he would not have had the same comfort and care since the VNA and palliative care were not in the picture anymore.

We prayed for wisdom and God made the decisions very clear. No second guessing, no doubting the choices we had to make.

The arrangements with the Ronald McDonald house were made quickly and easily. (at least from our perspective - Liz at the hospital may have a different story)

Jen was provided a meal tray in the hospital so she didn't have to leave Timmy Tuesday morning.

So many friends from our last stay were there to encourage us and be a blessing.

The new nurses on Timmy's floor were excellent and gave him great care and were super helpful to us as well.

Great care and doctors willing to go the extra mile with Timmy at our local practice, in Buffalo, and in Rochester.

A fresh baked chocolate chip cookie Tuesday at the Ronald McDonald family room on a day when it was really nice to have.

Safety in making two round trips to Rochester in under 3 days. Even when several accidents were seen.

Family & friends from all over that kept letting us know they were praying for us through those 2 days of uncertainty.

Yes, we have been blessed.