Team Isaac

Team Isaac Isaac beat cancer once, and he's going to do it again. But it's going to be hard. Again.

11/19/2025

Friends, so many of you have reached out and asked how you can help. I will be honest with you--neither of us has been able to work with Isaac in ICU in KC and caring for our other two. We have pretty much stayed afloat until now. Now we are sinking. If you are able to, please consider helping us financially. Venmo is jill-reynolds-68. We appreciate you all.

11/19/2025

Isaac is still on the ventilator. His lungs are still quite sick. Today there was talk of a tracheostomy and going home on a ventilator if we don't make real progress in the next week. This broke me.

11/17/2025

We're just treading water here. Isaac's chest x-ray looked worse yesterday and today. He's not tolerating attempts to wean from the ventilator. We just got back from a chest and abdomen CT. Hopefully we'll get some answers from that. It's been a long two weeks.

If you are looking for a worthy cause to donate to, please consider the Ronald McDonald House. There is one here within ...
11/15/2025

If you are looking for a worthy cause to donate to, please consider the Ronald McDonald House. There is one here within the hospital, and it has made this journey so much more bearable. It's down the hall from the PICU, and families of PICU and NICU patients have 24hr access. There are big, nice bathrooms with showers, towels, every toiletry you could need, a variety of types of seating, a mini library, and you can book sleeping rooms. There's a beautiful fully stocked kitchen--food, pots and pans, and industrial refrigerators full of food that you can help yourself too. Groups of volunteers come in and cook real, delicious food and serve it at least every evening. Then they package the leftovers and leave them so you can go eat at any time of the day, or grab something quick and get back to your child. All of this is free and easily accessible. These things make all the difference in a parent's sanity. It's easy to dismiss self-care when your child is critically ill, but they make it so easy and comfortable. This place matters. In addition to monetary donations, they joyfully accept any donations of goods, such as snacks, foods, frozen dinners, disposable dishes and utensils, laundry detergent and dryer sheets, dish soap, toiletries. There are no brand restrictions or anything, they give out whatever they receive.

In the last 24 hrs, Isaac has started to make pretty good progress. It's a very tricky balance to put all the right thin...
11/15/2025

In the last 24 hrs, Isaac has started to make pretty good progress. It's a very tricky balance to put all the right things in and take all the right things out, especially with one kidney. Today is 8 days since his last bowel movement, so we've been putting stuff in from both ends, and he has barely had any results, so another e***a is on the agenda for tonight. Also they took his catheter out and he couldn't p*e, so we've had to straight cath him twice, for a total of a liter out. This evening, his BP got extremely low, so we medicated that. The drop can be attributed to some of the other meds he's on, so at least we can work with that. We've had amazing care and support, and today I got a therapy dog visit, which was so desperately needed. I've been outside once in the last 13 days, in the courtyard directly outside Isaac's window.

11/13/2025

Isaac's chest xray this morning was considerably better than yesterday's. His pain med was no longer touching him, so we've switched to a different one. He hasn't pooped in a week, and his lungs would really like that extra room to expand, so that's our goal in the next couple of days.

11/12/2025

Isaac is still on the ventilator and requiring a lot of support, there are still no answers. At this point, he's been on narcotics so long that we'll have to have methadone when he comes off, to prevent withdrawals. Also, if we are not moving forward, we are moving backward. His chance of full pulmonary recovery decreases all the time. So we are going to try some new things we've been keeping in our back pocket, because only now are the risks acceptable for the potential gain. We have to push forward.

11/11/2025

Isaac is still on the ventilator. Almost all of the tests are resulted, all are negative. It's very frustrating for us and all of his doctors. The only goal for today is to let him rest and let his lungs heal. Just maintain. Just keep swimming.

11/10/2025

Isaac is still on the ventilator, BUT he is calm and cool and mostly cooperative. He's using a white board to write messages to us, and I am so damn proud of him. Also, one of our favorite people in the world came to see us, and just continues to be a bright spot even in our darkest times. My parents have just stepped right up and are taking care of my other babies, so Andrew and I can be here while Isaac needs us, and we need him. So many people have helped in so many ways, and we are deeply grateful for our village.

11/09/2025

Isaac was doing really well on Saturday at noon, and was extubated. He was put on oxygen, couldn't maintain his O2sat, was on bipap but was just struggling and exhausted just from barely breathing. He was mad at the world, and at us. In the middle of the night, the care team agreed he needed to be intubated again, put back on the ventilator. So now our baby is sedated but it has been a constant struggle to keep him far enough under that he's not in distress, but also keep his pulse and BP within normal limits. It's a huge step backward, square 1 is where we live.

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Topeka, KS

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