King of Hearts: Griffin's Journey to Transplant

02/10/2024

Much needed update!

First, Griffin had a biopsy done on Thursday that showed NO REJECTION! Praise! His next one will be at his one year post transplant in August.

Griffin started back to in-person high school this semester. He was anxious and excited to get back. Even though he enjoys being back and seeing his friends, he is struggling to keep up with his studies. We are grateful for IEPs and understanding teachers!

We are still so incredibly grateful for those of you that continue to check in on him and us. What a village we are surrounded with!

10/27/2023

Griffin has been suffering with ascites (fluid in the belly) since his transplants. We were hopeful that it had stopped accumulating when we were able to go home two weeks ago. Unfortunately, he is still struggling.

Last week Griffin had a paracentesis and they drained 1.7 L off his belly. The fluid quickly reaccumulated and he needed another paracentesis today. Today they drained 4.7 L and he feels much better. We don’t know how long this will last or how often we will need to bring him in for this procedure.

We are grateful that his transplant teams are willing to continue doing these outpatient procedures and not admit us, but it is taxing on all of us. Griffin is the toughest kid we know and continues to amazed us with his patience and tenacity.

Please continue to pray. Specifically for his kidney numbers to remain at a level that allows us to stay home. We had to increase his diuretics and that can be taxing on the kidneys. Also pray that he is able to continue to eat and drink appropriate amounts. His nausea is better for the most part, but still suffers at times.

Thank you all for your continued support!

10/12/2023

Griffin is HOME!

On Monday the drain in his belly came out and the team was confident that he could make it home before his birthday. They surprised us last night and said he could go home!

We are determined to stay home this time! Griffin has to focus on drinking plenty of fluids and eating lots of calories to maintain his weight. He lost quite a bit of weight with this last stay and it’s time to fatten him back up!

We are so incredibly proud of Griffin. This stay was very difficult for him mentally and physically. He is working hard with therapists and his transplant teams to ensure that he continues to be healthy. What an amazing young man he is!

We can’t wait to get into a new routine! The biggest gift is being home for his 16th Birthday. Thank you all for your ongoing love and support!

10/01/2023

Not much to update, except that we are still inpatient 😭 Griffin still has the peritoneal drain that is still going strong. It has slowed a bit and we are thankful for that. The team continues to adjust medications and diet in hopes to slow down the drainage.

Griffins mood is still pretty good for the most part. Today we got to go outside and eat dinner. We had yummy Thai food and enjoyed the weather!

Thank you all again for all your support. It means the world to us to know we have prayer warriors out there. Love you all!

09/23/2023

Griffin went to Cath lab on Wednesday to do biopsies of both heart and liver and also had a paracentesis to drain fluid from his ever growing belly. They pulled 6.5 Liters off and decided to leave the drain in. This is the most upsetting thing for him. The drain is painful and very uncomfortable.

The biopsies have both come back with no REJECTION! Praise! Both also no real answers as to where all the drainage is coming from. Most likely it is lymphatic drainage and will slow down on its own…..but no one knows how long that will take. Griffins appetite has not been great, so they are giving him IV nutrition. He is up and walking and doing his best to do what he can to go home.
are here for the unforeseeable future……until his belly stops draining. Specific prayers for Alex and I as we navigate having both gone back to work full time and juggling home and hospital. Prayers that Griffin will stop draining and we can get back home where he is most comfortable!

Thanks to everyone who has reached out…..you are appreciated.

09/18/2023

Well…….unfortunately we’re back at PCH. Hopefully for a very short stay.

Griffins stomach has been bothering him and swelling throughout the day. He had follow up appointments with the transplant teams today and it was decided it was time for an abdominal ultrasound. There is quite a bit of fluid in his belly making very uncomfortable. It was decided by his liver team to admit him for further testing.

The plan is to give him some blood, a liver ultrasound and then an abdominal CT. We are hopeful that we will get some answers, some relief, and then home as soon as possible.

Griffin is quite bummed but is also looking forward to getting some relief from the discomfort the ascites is causing.

We will keep everyone posted as find out more information.

09/04/2023

Griffin got to go outside today! It’s been 8 weeks since he’s set foot outdoors. He immediately got comfy and took a little nap 😂

Griffins new heart is still doing all the work on its own and not needing the pacemaker! His chest tube drainage seems to have slowed down. There’s talk of possibly getting the chest tube and pacing wires out tomorrow! His appetite and fluid intake is also getting better.

You guys we are nearing the end of this hospital stay! Prayers that things still progress nicely and that he continues to heal. Thank you all!

09/02/2023

Griffin is having a pretty good day today! The biopsy showed NO REJECTION! Griffin got both his JP drains out (liver) yesterday. His chest tube output has slowed a great deal too. His chest x-ray this morning looked fabulous. Another amazing thing is that his heart is no longer being paced! This is a big deal and we are so grateful. Let’s continue to pray that this remains. Griffin belly pain has also reduced significantly and his bowels are moving!

I don’t want to jinx it, but there’s a small possibility that if things continue in this direction, we could be home sometime later this week!

Shirt by Kim Goguen

09/01/2023

Griffin is still doing well overall. Today was a bit of a tough day. He went down for a heart Cath this morning to check for rejection and we will have results tomorrow. Unfortunately after his procedure he had increased chest tube output that required a stat echo, X-ray, and a visit from his transplant teams. Nothing to concerning on those tests, so we are just keeping a close eye on it. He is getting some blood now and is feeling much better!

Although Griffin has always taken medications for his heart, transplant meds are a whole new beast. Griffin is struggling a bit with the sheer amount of meds he has to take several times a day. He also hasn’t had a bowel movement yet and that is casing him some significant pain.

Griffins new heart is still being externally paced. This is expected, but we are hoping that his underlying rhythm will kick in and those can be removed soon.

08/26/2023

Another big day! Griffin got his breathing tube removed and he couldn’t be happier about it. He is still required a lot of IV medication to support his new heart, but nothing they weren’t expecting. His heart is also being paced with an external pacemaker, but again, this is the normal course.

He is complaining quite a bit about back pain and we are working hard to try to position him for comfort. Otherwise, his has been well managed with medication.

Griffins other big complaint is that he can’t eat or drink anything. They did allow him some ice chips, which he was grateful for. We are hoping tomorrow the team will allow a few sips of water.

All in all, it’s been a great day. I still just can’t believe he is doing this well! He is my HERO

08/25/2023

Wow! What a day. Griffins transplants went better than expected and he has started the recovery journey!

The last 36 hours have been a blur for all of us. He got back to his room at 4am yesterday and we were able to see him a couple hours after that. Everyone has been pleasantly surprised at how well he’s done.

He did have a little blip on his liver ultrasound that required a CT scan. They were worried about a clot in his portal vein, but the CT showed NO CLOT! Praise!

He has woken up a few times and made it very clear that he wants the breathing tube out. His heart is still being supported with lots of medication, but he is moving in the right direction.

Thank you all for your calls, texts, food, and prayers. Alex and I are taking turns sleeping (cat napping) when we can. There’s always at least one of us by his side!

Thank you all again for your support!

08/23/2023

And he’s off……

08/23/2023

We have a DONOR! We have waited 6 long weeks and yesterday at about 9am we received word that the perfect match had been found. There were a rollercoaster of emotions to follow and we spent the day at the hospital preparing Griffin and our hearts for the hardest part of this long journey.

Griffin will be going down to the OR at about 2pm today. The surgery is expected to last anywhere from 12-15 hours. They will place his new heart first, then place the new liver. We are so incredibly grateful to have the very best team of surgeons, physicians, and nurses to get him through the next several weeks.

We are asking for prayers for the donor family as they are undoubtedly going through one of their darkest hours. We promise to honor their gift of life. What a blessing!

Alex and I will both be taking an extended leave from working to support griffin through this difficult recovery. If you feel so led, our GoFundMe is in the bio. Thank you all again for your continued support.

08/10/2023

The American Legion has so graciously set up a Blood Drive in honor of Griffin. There will be raffles for gift certificates and lots of other prizes! They are also collected school supplies for the community and if you bring donations…..you will get a free lunch!

We are hoping to have a Donor Network of AZ stand there too where you can sign up to be an organ donor.

Alex and I will be there and we would love for you all to come support the American Legion and our family!

08/08/2023

What an amazing organization. We are so grateful for their support!

    RaeRae of Light®The RaeRae of Light® organization is a 501(c)(3) nonprofit created in honor of our angel baby Reagan, who was born with a critical Congenital Heart Defect and was taken from us too soon. Our mission is to raise awareness and fund research for CHD’s and to help other childre...

08/04/2023

Pet Therapy puppy named Lucy. Griffins never really been an animal lover, even though we have 2 dogs at home. After Griffin had his bleeding episode, one of our dogs Lexi started following him around the house. Eventually the dog was sleeping in bed with Griffin and he loved it. I think dogs know when things aren’t right. Griffin misses her deeply and the therapy dogs at PCH help a ton.

We heard back from Stanford last week and they agreed that Griffin needs both a heart and liver. We weren’t surprised but it was good to know we are on the right track.

Again, thank you to everyone that has reached out, prayed, donated, fed us, and come to hang out with Griffin to give Alex and I a break. We really can’t express our gratitude except to say thank you.

Continue to pray for the perfect match to come soon. Also keep the future donor family in your thoughts. Love you all!

07/27/2023

Today marks 14 days on the heart/liver transplant list. For the most part, Griffin’s been feeling well and able to walk, exercise, play games, and joke with all the providers.

The waiting has been incredibly difficult. It’s a rollercoaster of emotion. It’s been challenging for Alex and I to manage our time between home, hospital, and work. It has been so helpful when so many of you have come to hang out with Grif so that we can get a bit of a break. We have the best village surrounding us!