Updates:

June 7, 2023

Hello everyone. I know I haven’t done an update in a while. Not much to update about. Conor is happier than ever. We are just patiently waiting for the day we get the call they have a heart for Conor. I did want to share with everyone that Conor has been the treadmill with PT and OT to help strengthen his legs he loves it. We also gave Conor a haircut which he hasn’t had one for about 4 months. Please see picture attached. Thank you everyone for you continued thoughts and prayers.

• May 9, 2023

5/9/2023 update: No big updates besides Conor is back on the transplant list. He is doing good. Continued prayers are greatly appreciated. Thank you.

 

• April 27, 2023

4/27/2023 Update: Conor is doing much better since Tuesday. The neurology team is happy with the progress he has made since having the stroke on Tuesday. He has been able to use is left leg and arm more. They are definitely stronger than they were on Tuesday. He was in such a good mood today (4/28/2023). He is able to do all his normal activities that he was doing before the stroke. The neurology team stated they do not need to follow him unless something new pops up. We will be back on the transplant list around May 8,2023. Thank you again for everyone’s thoughts and prayers.

 

• April 25, 2023

4/25/2023 update: Hello everyone, it’s been a while since we’ve done an update. Conor has been doing good. He had a little bit of a scary day today. He was a little weaker on the left side then he has been. I let the nurse know and they got a hold of the team and said that they think he needs to go get an MRI right away to rule out a stroke. They did the MRI and found evidence of an acute stroke. He seemed to be doing better after the MRI but the team is going to keep a close eye on him. He is Status 7 right now which means being on the list is put on hold for about 2 weeks. Please continue to keep Conor in your thoughts and prayers.

• April 3, 2023

4/3/2023 update: Conor is doing great. He is such a happy 3-year-old. He got to go outside for the first time in a long time yesterday (4/2/2023), he loved it. Told at about 5:00 pm insurance approved Conor for transplant. He is officially on the list! Thank you again everyone for the wonderful support.

• March 31, 2023

3/31/2023 update: Conor is a big 3-year-old. He had a great birthday yesterday. He did have to go for an MRI to fill the finally piece of testing to see if he could be a heart transplant candidate. I spoke to the team at rounds today and they let me know that Conor is a candidate for heart transplant. They have submitted everything to insurance to get authorized to get him on the list. Please continue to keep him in your thoughts and prayers. His journey is not over yet.

• March 24, 2023

3/24/2023- Conor has been doing good. He is in such a good mood. He has been on many wagon rides around the units. He got transferred up to the CPCU 3/21/2023. He was doing good up until today 3/24/2023. He is still in a good mood but his O2 saturations have been in the high 60’s low 70’s and he is back on 12 liters 100% oxygen which is a big difference from yesterday 3/23/2023 when he was on 7 liters in the mid 70’s for oxygen saturations. He is back in the CICU now so they can keep a closer eye on him. I have told the team that I don’t care where Conor is if that is in CICU or CPCU as long as he is happy and playing. We have him scheduled for Monday for a Cath procedure to see what his numbers look like. Once we get all of that we should hopefully have an answer about him being a heart transplant candidate. Please continue to keep us in your thoughts and prayers.

• March 13, 2023

3/12/2023 update: Conor is continuing to get better. He is starting to be himself again. He was able to get the right chest tube out which is very exciting. He is almost to his goal feeds of 40mls. We have two more big tests to do before the transplant team can sit down and re-evaluate him. We need to do a CT to look at all his organs and make sure he doesn’t have any blood clots. Also, we need to do a Cath procedure to measure the pressures in his lungs and see if there are any collaterals, they need to take care of that would help his O2 saturations. We haven’t been able to do either of these tests yet due to his kidneys being damaged from medication he was on. The kidneys look much better. We are going to get the CT done here soon hopefully today (3/13/2023) or tomorrow (3/14/2023). Once we have that done we will figure out when a good time to get the Cath done would be. I did ask the transplant team over the weekend his likelihood of coming home to wait for a heart once we determine if he is a candidate for a heart and they said he would more than likely stay in the hospital till he gets a heart which could be anywhere from 6 months to 12 months before he could get a heart. Please continue to keep Conor in your thoughts and prayers. Any donations you can give would be greatly appreciated. Thank you

• March 5, 2023

3/5/2023 update: Conor has been doing good. We have started the process for re-evaluation for getting Conor on the heart transplant list. They said once they get all the testing done that, they needed to do they will sit down and go over everything as a team and see if Conor is a good candidate for a transplant. He has made some progress with things, he has been taken off the CPAP face mask and been put on high flow cannula, he has been weaned of the nitric completely which is a good thing. He is up to 10 mls of food and they increase it 2 mls daily. He is making good progress for sure. They have not noticed much output of the chest tube either which is good. He is doing good for sure. We still have a long way to go. Please continue to pray and if you can donate, we would really appreciate anything helps. Thank you

• March 1, 2023

2/28/2023 update: Conor is back in Denver at Children’s hospital of Colorado. We are so happy to be home. He is doing well. Conor was so excited to see Brooklynn. We are now just trying to settle back down into being home. We are starting the process for the heart transplant of things. We are going to need to do some tests over again and get Conor re-evaluated for the heart transplant and get him on the list. Conor has made it through so much in the last month. He has a long road to go but we are so hopeful. We appreciate your continued prayers and support. We will keep you updated.

• February 27, 2023

2/22-2/27 update: Conor has been doing good. His mood has been a lot better since getting all of the sedation medications out of his system. We are heading back to Denver Colorado today (2/27/23)! We are very excited to finally be going home and seeing all of our family especially our daughter. Conor will be re- admitted into the CICU at the Children’s Hospital of Colorado where he will continue to recover and be put on the heart transplant list. Hopefully he will recover well to be able to come home and wait for a heart and live somewhat of a normal life. We will continue to keep you update. Thank you for everyone’s continued support.

• February 21, 2023

2/19-2/21 Update: Conor is doing good. He continues improve and get stronger. They have just been weaning him down on some IV meds. We hopefully will be going back to Children’s Hospital of Denver soon. Thank you to everyone who has donated kept us in your thoughts and prayers. We appreciate at you all so much.

• February 18, 2023

2/18/2023 update: Conor is doing good. They are continuing to wean him off of IV medications. They are thinking about getting the right chest tube out Monday since they haven’t seen anything drain out of it. He is getting stronger everyday. Thank you for your continued support.
Also please tune in to KDVR Fox31 at 9:00 pm or 10 pm to see Conor’s story and how to help awareness with congenital heart defects.

• February 18, 2023

2/16/2023-2/17/2023 update: Sorry about the late update. Conor is doing good he got the breathing tube out on Thursday 2/16/2023 and looks like he is more comfortable. We also were able to switch to a different blood thinner. He also got the drain in his stomach out as well.
2/17/2023 update: Conor is starting to get his voice back. He is more alert and playing with toys. They started feeding him through his j-tube again slowly. I think he is happy about that since he hasn’t been able to eat since 12/28/2022. He is doing good. He is getting stronger. We will see what the weekend brings. Thank you to everyone that has followed along on this journey with us.

• February 15, 2023

2/15/2023 update: Conor is off the paralytic medication; he is moving a little more and opened his eyes today for the first time since a week ago. He responds when you ask him questions. They say he is doing good, but he still has a long road ahead of him. Thank you for your continued prayers and donations.

• February 13, 2023

2/13/2023: Conor is doing good today. They are going to take him back for another Cath procedure to see if there is a leak they need to fix or any collaterals that they need to be coiled off. Hopefully once that is done, we can get some answers on when he can come off ECMO.
Conor is doing good. They said he did great for the procedure. He is off ECMO! They are going to leave the breathing tube in for maybe another day or two to let his lungs recover from everything that he has been through. They will also take him off the paralytic medication tonight or early tomorrow morning. They don’t know when we can go back home to Colorado. They are just going to take it one day at a time. Please continue to pray. Thank you for everything as well, we appreciate it so much.

• February 13, 2023

2/12/2023 update: They weren’t able to turn ECMO off but they did get good info doing this. They are going to go back to the Cath tomorrow to make sure his mesh Stent isn’t allowing bypass and possibly put another block in, just to make sure his heart is pumping blood the way they want it. They will also look for any collaterals that they need to coil off. This will help his oxygen saturations so he can be more self-sufficient and recover faster. He is strong. He’s got this.

• February 11, 2023

2/10/2023 update: Conor has been doing good this morning. He will go back to the Cath lab to take down the fenestration and go back to the Glenn procedure he had for his 2nd open heart surgery. Before they do that, they will make sure the clot is gone.
Conor did good for the procedure they found no clots! They were able to close off the fenestration with no problems. Doctors said the procedure went well. The plan now is to let him rest for the weekend and maybe start getting him off the ECMO machine Monday. He is a tough little boy. Thank you again for everyone’s continued prayers.

• February 10, 2023

2/9/2023: They took Conor back to the Cath lab to get the clot out. It was a very rocky surgery but they got the clot. Definitely been a very emotional few hour. We are not out of the woods yet. This has been one of the more scary times of Conor getting a procedure done.
The Cath doctor came out and talked to us letting us know the next plan of action they are going to take since getting the clot out. They are going to let him recover. They will be checking his kidneys, since using a lot of contrasts can hurt your organs especially your kidneys, they just want to make sure those are okay. He peed a lot during the procedure, so they think they are fine, but they want to be sure. They are also going to do a CT scan on his head to make sure his brain is okay. They don’t think any of the clot made it that way, but again, they want to be sure. They did say the clot was a lot bigger than expected. Essentially, it went from his heart all the way to the groin in his left leg. So, we’re extremely happy they got that taken care of
Tomorrow Conor will go back to the Cath lab to take down the Fontan procedure and go back to the Glenn surgery he had done for his second heart surgery. His body cannot function with the Fontan at all. He did best before he got the Fontan procedure done. The Glenn procedure is the best option for him 1) to get off the ECMO machine 2) his body did better with the Glenn procedure. The procedure will take place tomorrow (2/10/2023). We will do another update tomorrow after the Cath procedure. #Conorstrong. Thank you everyone for your continued thoughts and prayers.

• February 8, 2023

2/8/2023 Update: Conor has had a rough morning so far. They had to take the cannula off and do a full mask for oxygen. They are trying to balance out the fluid that is coming out and replacing it. Trying to get his blood pressure figured out as well since he does have a lot of fluid that is being drained out. They have done an echo to see how the fenestration looks. They are giving him plasma to help thin out his blood. He may have to go to the Cath lab tomorrow to get that fenestration opened up to help with the fluid that he has.
They did a new echo and it shows that the blood clot has extended to his Fontan. They put him on a new blood thinner to try to break up the clot. They have been trying to come up with a plan on what to do for him. They have decided to put him on ECMO which is like a heart and lung machine because they think if they don’t do that then he won’t make it tomorrow for the Cath procedure. He is a fighter. Please continue to prayer for him.

• February 7, 2023

2/7/2023 update: Last night (2/6/2023) Conor had an eventful night. They tried pulling the breathing tube out but he ended up getting a code blue. They were able to get a new breathing tube put in to help him breath.
2/7/2023: Today they are monitoring brain function for seizures due to the code blue last night with trying to take the breathing tube out early. So far neurological he is doing good and there is no concern for seizures. He’s responsive and doing typical Conor things. They have pulled his breathing tube out and is doing good. He also developed a clot by his fenestration which is some concern because the fenestration allows blood to flow to the lungs. They’re going to try to break that up with thinners. So far, a crazy day and night already but we are working to make good progress. Please continue to keep Conor in your thoughts and prayers. We are not out of the woods yet. Thank you everyone.

• February 6, 2023

2/6/2023 update: Conor has made it through the surgery. The doctor said the surgery went well. He was pleased with the outcome. They were able to glue the main lymphatic that was causing a lot of the problems. Conor still has a long road ahead of him, but is a tough little guy. Please continue to pray and keep him in your thoughts. We appreciate everyone that has donated and prayed! ??

• February 2, 2023

Update: Conor got expected to go to Children’s of Philadelphia (CHOP). They leave today 2/2 and will be there for about 10 days. When Conor arrives at CHOP, they will do their own test on him. On Monday 2/6 is when the long day will begin. Conor will need to get a catheterization, MRI, and then the lymphatic procedure done. That is about an 8-hour day alone. Once down he will go to the ICU for two days to be monitored closely then after about the 2nd day in the ICU he will go to the step-down unit. He will recover in the step-down unit for the rest of the time they are there. Once he is stable and all medical results look good they will fly back to Denver and get reevaluated by his team at Children’s Hospital of Aurora. Please continue to keep Conor and family in your prayers through this journey. Any donations are still appreciated. Conor has a long road ahead still. Thank you