Caelen Gorman: August 2012

Tuesday, August 28, 2012

Cath update - Cardiology

Dr Rychik came in to talk to us and said he was really pleased with Caelen and his cath results. He wants to meet with his team, including the surgeon, Dr Spray, and schedule his Fontan. He is thinking 2-4 weeks. The reason that he wants to do the surgery now is because Caelen has been optimized in the cath lab with the plugging and coiling of collaterals, and in theory, this will help minimize the risk of pleural effusions (fluid in the chest cavity) and chest drainage. Caelen had a major problem with effusions after the last surgery, so this is as good a time as ever to do the Fontan.

I have mixed feelings about the Fontan now because, well hell, who wants to go through another hospitalization? But doing it now gets it over with and stops it hanging over our shoulders.

So we'll wait for a date and in the meantime, go back to isolation mode. Stinks that Caelen can't start school now until after the surgery, but that's a small price to pay for his health.

Here's a pic of Caelen in recovery playing with gabba on his iPad and watching cars on the tv above his head. He's doing really well and can get up in an hour and a half. After the cath he has to lay flat for 6 hours, but he's drinking a lot of water which is good. We're still waiting on the formula lab to bring up his food, seems like no matter the hospital, some things never change. Lol.

Cath update 3 - Recovery

Caelen is finished and should be going back to recovery shortly. Dr Rome told us that he plugged about 4 or 5 small collaterals on the right, and 2-3 on the left, plus one from the lower extremities. Overall, he did really well, his numbers and pressures are good, but Dr Rome noted that his hemoglobins are high, which means that Caelen is on the bluer side and his body has been producing extra red blood cells.

Dr Rome has not spoken to the cardiologist yet, so no official word, but the suggestion was towards doing the third surgery this fall. Once we can get back to see Caelen and talk with cardiology, we'll know more. But we are definitely staying overnight.

Thank you all again for your prayers, we still need them.

Cath update 2

The Drs just finished coiling collaterals on the right and now they're are working on his left side. The nurse didn't know how many collaterals, but
I'm guessing there must have been a few since it took an hour just on the right. Next update will be in a hour.
Keep praying please.

Cath update #1

The nurse just came by, Caelen is doing great, all the wires are in place and Dr Rome is starting to coil collaterals. We don't know how many yet, next update will most likely be when he's finished.

MRI is over

So not bad news, but the MRI wasn't able to be utilized. Caelen has stainless steel coils in his chest from past caths done at Childrens in DC, and metal and MRI machines don't mix. Here at CHoP they use platinum coils so that they don't interfere with the machine. What this means to us is that the doctors cannot really get images of any collateral arteries that may be in his chest cavity, stealing oxygenated blood from his lungs. This would have been extremely beneficial because the MRI would have also told us if there was any blood flow in the collaterals or not, and if they needed to be coiled off. Coiling isn't bad, but you don't want to keep doing it if you don't have to.

Caelen is now in the cath lab where they can still see the collaterals, if there are any, but the docs will kind of be flying blind as to whether or not they are posing a problem. The risk being that the wrong artery could be coiled or plugged, and the wrong artery being a nervous system artery (brain). Thankfully the risk of that is low, but now you see why MRI is so important. I wish we had known years ago that there was even an option to not do metal coils. But there is nothing we can do now, MRI is no longer an option for Caelen.

We'll post again once we know more.

Cath and MRI

Caelen just went back into the MRI lab and they were able to sedate him before giving him the gas mask. This is so much easier than starting an IV while he's awake. The MRI will be done first and takes about an hour and a half, then he will slide next door to the cath lab. We will not have an update again until he gets into the cath lab, but we'll post again as the updates come.

Thanks to all for your prayers.

Love,Katye, Martin & Caelen

Friday, August 24, 2012

We're back!

Caelen and I had a wonderful time in Florida visiting friends and family, although the month went by way too fast. While we were there, Caelen got to go to preschool 3 days a week with cousin Lily and did really well! All of the teachers and staff got to know him and would wave and say hi to him in the halls. He's become very popular at only 3 years old. He loved his teachers and especially Mrs. Carol who greeted him every morning, and Mrs. Connie who said goodbye to him in the afternoons. Caelen also got a chance to test drive the 2 year old class since he'll be starting at a new school next month with the 2 year olds, as opposed to his old school that kept him in with the 1 year olds. He handled the transition very well and I expect that he will do equally as well once he meets his new teachers and classmates.

We also got to visit with the Carpenters quite a bit and get in pool time with Uncle Jason, although Caelen calls him uncle kit kat because he can't say Jason. Aunt Morgan spoiled C and me, and he keeps asking when we are going back. He loved playing with Savannah and Grace and picked up lots of new words, mostly good too. I can't say the same for their older dog Georgia, but the good news is that Caelen won't be bothering her again until next summer.

C and Lily did better this summer too. Now that Caelen is up and running, he was able to chase Lily around the house as she screamed for him to get away. There was still a lot of nose honking by Caelen, and that didn't improve relations with Lily, but all in all, they did great together.

We spent a few weekends with my dad at his house and Caelen loved the pool! Dad has lots of dogs as well as a lot of space to run, so between the dogs, halls and pool, C was in heaven.

So now that we're back, we are gearing up for the cath next Tuesday, going up to philly on Monday for the pre-op. This cardiac cath, combined with the MRI will tell us whether he needs his third open heart surgery, the Fontan, this fall or next spring. We have been on isolation mode since we got back from Florida and are just trying to keep him as healthy as possible so we don't have any more delays.

We did manage to throw him a very small family birthday party at Ledo complete with the disney cars theme, and he loved running around the room and trying to escape to the main dining room with the other guests. Everyone had to play defense with Caelen, which made the game that much more fun.

So that's it for now, i'll update again from Philly once Caelen's cath starts, and any updates as they go along.

Thank you to all who keep us in your thoughts and prayers, we're gonna need them.