3/4/2021

On Monday, March 1st I updated that Cory had the swan catheter in his neck and had to spend the night with it in. The plan was to collect data overnight to see how his heart and his heart pressures were working on the medication.

 We waited around all day for the doctor to come by to check in with how he was doing and if they were getting the data they needed. They basically stopped by a few times on Tuesday & Wednesday and a lot of numbers to each other and wrote them down. The word wedge came up a lot but not sure what it meant. The swan catheter is still in his neck as of today Thursday, March 4th.

On Tuesday they said he still had too much fluid in his body so they upped his diuretic to try to remove more fluid. Cory lost five pounds overnight of water, now he’s down 20lbs from when he first went in on February 25th for his doctor’s appointment. It was all excess fluid that his body was storing.

We spent most of Tuesday and Wednesday waiting for more information. On Wednesday, March 3rd, the doctor told us he needed one more night of data with Cory off of all the medications. They basically were measuring to see if his heart liked the medications or if his heart needed the medications. We should know today what the answer is and what that means moving forward.

The doctor also used a lot of scary words like LVAD and Heart Transplant. If oral medications don’t work we will need to go down another avenue. The doctor is being very thorough to find the right solution for Cory, otherwise he said he would just start feeling crummy again and would end up right back in the hospital. LVAD and transplant are in the mix but not the solution. To clarify, If Cory is assessed for these things then he's one step ahead should they need to happen. We still aren't sure what the solution will be, but they will be in motion as a plan B should we need them.

Today they are putting in a PICC line, which stands for peripherally inserted central catheter. It will go into his upper arm to deliver his medications closer to his heart. It may be there for a while, but it will allow him the mobility to walk around and still get his medications.

Cory is still in the CICU because of the medications. Once he’s on the floor they no longer can adjust his medications, so we have to make sure we have the right balance before he can be admitted into a regular hospital room.

In addition to the PICC line, Cory should be getting his Swan Catheter out of his neck (yay!) and we hope that he’s feeling up for having Kaitlynn come by later this evening (yay!).

Cory is still doing well, holding up strong, frustrated by lack of mobility, and is ready to take the next step. We’ve been researching salt replacements and new seasoning options, even making our own soy sauce for stir frys. He’s been making his own liquid consumption log and comparing it to the nurses for practice to make sure he’s following all of the rules to live a healthy life outside of the hospital. He’s been eating so much! They give him three meals a day that come with sides, so he squirrels them away for later (things like granola, yogurt, and muffins). They log everything he orders so they are watching his sodium intake for him, but we’re reading labels on everything to get a good idea of how much sodium is in certain items. We’re also looking at replacement items for things we cook with a lot, such as low sodium vegetable base and no salt added diced tomatoes. The more things we can find with less salt, the better.

Today Cory got some fancy new Lisa Frank coloring books, stickers, and temporary tattoos courtesy of the wonderful staff at the County Clare. I didn’t bring everything because we hope to be moving soon and he has about 1,000 things we’ll already have to carry. But the prize gem might just be the GigaPet that is a unicorn, so now he has a pet to take care of in the hospital, which he is excited about. It allegedly makes “real unicorn sounds” so I can’t wait to hear that.

Thank you all for the love and support via texts, emails, calls, photos, donations, and posts. We miss you all and appreciate everything!

Sarah