Lungs for Gavin

Gavin was as with all people who have CF born with it. CF is genetic. Both of your parents must be a carrier. Gavin was in the NICU after birth and on the day, I went to bring him home is when his newborn screen came back and I walked into a total bombardment of what I was not expecting that day, his diagnosis day.

Gavin has always been on the sicker end of the spectrum. He is DDF508, the most common mutation. He has been very complicated. He has been seen every 3 months at the Cystic Fibrosis clinic his entire life and also has many other specialists. He has been hospitalized for weeks at a time on numerous occasions. He has had well over 15 sinus surgeries. He has a feeding tube, a port and is on oxygen 24 hours a day currently at 4 liters. The stuff that he grows in his lungs can only be treated (when at the worst) with IV meropenem. This has had a major effect on his teeth. He was on this when he still had his baby teeth. Infectious disease had to discuss this with me as it would most definitely affect the adult teeth before they even came in. The adult teeth are discolored, and the enamel is damaged. There really was no choice, however. Gavin is on approximately 6 different medications he has to take in the morning and then again at night and he also has to take enzymes before he eats anything. He also does breathing treatments, three different ones throughout the day. He also does airway clearance. After transplant he will still be on the same CF meds and add additional meds for anti-rejection. He has to eat a high fat high calorie diet but has always had a hard time doing this. He would have to eat 4 times the amount of food a normal 13-year-old eats to maintain his weight. He gets boost kids essentials (chocolate only) to help with this. He started the relatively new medication Trikafta and this has helped tremendously. Gavin struggles with reflux, sleep apnea, chronic sinusitis, pancreatic insufficiency, CFRD, Sun allergy just to name a few.

Gavin is very picky about what he does eat by mouth. This is actually not that unusual. He loves McDonald's plain cheeseburgers although he does not eat the bun. Their sweet tea is his favorite. He likes Little Caesars cheese pizza and crazy bread. Subways pizza, Bob Evans chicken tenders and that’s about it. I buy pretzels by the case from amazon, Rold Gold individual bags lol. Sometimes he likes Fritos and Cheetos. The only candy he will eat is plain Hersey bars and kisses. Gavin also goes through toilet paper like mad as his nose is always crazy and he hates saliva in his mouth...idk. I just ordered a case yesterday. Otherwise, he likes to eat Mac and Cheese, only Kraft, Spaghetti with Parmesan, shredded Colby jack cheese, and that’s about it.

We tried school with Gavin. He went to preschool at Corunna, but it was hit or miss with attendance. This was the same with kindergarten and 1st grade. He was home more than he was at school as he just catches everything. We then switched him to homebound.

Gavin is like a little grumpy old man. This is how we; his social worker and I described him to St Louis. He may be 13 however he has gone through more than most people do in their entire life. Transplant is his decision either way.

As far as what Gavin likes to do, he plays ROBLOX, Minecraft, Fortnite, and is in discord with approved people. He goes through spells where he likes to read and can read an entire book in half a day. He likes to draw but in lined notebooks so he can create a story. He likes colored ink pens and plush characters of whatever it is he is currently into. He also loves soft blankets and pillows.

Yesterday when speaking with St Louis they went over the information that I have already reviewed but in more detail. The statistics of survival one year post is 80%- and five-year post is 50%. When we go there, we will meet everyone who would be involved with the transplant. While we are there Gavin will be tested every day. The following Thursday the team will meet to discuss him and then will call us with the plan. If Gavin decides he still wants to move forward, that is what we will do and we will then make arrangements to go down there. They explained the process for when lungs become available and are retrieved etc. Post transplant we have to stay in St Louis a minimum of 3 months. After we return to Michigan Gavin has to return to St Louis at 6-9 and 12 months and then every 6 months following that for testing. He also has to have monthly labs done.

Gavin is very aware of what all takes place and has his own questions to ask. I still don’t know myself how to process it as there is no telling if we don’t do a transplant how long his current lungs have. Yesterday Gavin said to me that he could die on the table and that’s now amplified in my head, although I already knew that. All of this is about quality of life in the long run but it still all sucks.

UPDATE: Jan 26, 2024

Ok so Lungs for Gavin PET scan came back confirmed for PTLD (blood cancer) This is definitely not what I was wanting to hear. Gavin will see the doctor on Monday and have more labs done and they will do the necessary biopsies on Tuesday. Also on Tuesday they will do is bronc and biopsy and staples removal that was canceled yesterday for the PET scan.

This also means that we will not be leaving here next week. I just put in a reservation change. Thankfully they allowed me to do this without paying upfront this time. As of now they told us to hold it till the 14th but everything depends on the biopsies and getting more things set up back home. I have to change appointments that were already set and we have to get him into Mott’s pediatric oncology clinic.

Please continue to share and donate... their journey is not over yet.

UPDATE:

Long day today today, 8:30-4:30!! Lungs for Gavin did excellent in Physical Therapy even with falling asleep in the waiting room beforehand.

He now weighs 108.8lbs and is 5’1”!! He was under 80lbs before transplant so that’s pretty amazing.

Myah and Gavin are already passed out and I’m headed for a quick nap before I look at tomorrow’s schedule!! PLEASE DONATE AND SHARE FUNDS ARE NEEDED FOR THE TRIP HOME. HOTEL REWARDS POINTS WERE DONATED FOR THE STAY FOR THE WEEK BUT YOUR CONTINUED SUPPORT IS NEEDED AN APPRECIATED. THANK YOU FOR EVERYTHING YOUVE DONE.