30 Days Home

Down a dirt road, on these unseasonably warm February days, Oliver has found a new kind of joy….horseback riding. He has gone two times now, and each time he has loved the experience. He sits really tall on the horse and smiles for the entire 60 minutes. It has been good for all of us to get out of the city and into the woods.

This morning we leave to go to Wake Forest for an appointment, blood work and an EKG with Oliver’s neurologist. Then we jet over to Chapel Hill for a 4:00 appt. with our critical care pediatrician, and the next day we have another 6 appointments at UNC. We took our vitamins this morning...this is going to be a marathon 2 days!

Oliver’s stomach issues seem to be almost completely resolved. He is sleeping well most nights, but he is still an early bird...6 am is sleeping in at our house. In the past few weeks, he had a brief (but scary) brush with vomiting and dehydration, but we made it through. With the help of the Complex Care Clinic doctors, we were able to use the g-tube to keep him hydrated at home until we returned to baseline. Andrew and I were really quite proud of ourselves that we kept Ollie well and out of the emergency room.

On the flip side, we are struggling to get Oliver over 60 lbs. He is on an 1800 calorie diet a day and we are still hovering at 59 lbs. He is quite active some days; jumping on the trampoline for hours, or hanging around the mall (his new favorite activity). He is not drinking well at all. In fact, some days he has no liquid intake by mouth. However if you get a taco or cheeseburger near him, he’ll always make room :-)

The newest symptom (and it is very concerning) is his breath holding.  Since December, he has done heavy breathing throughout the day, almost to the point of hyperventilation. This past week, he has added extreme breath holding to his repertoire. The problem is, he is often holding it so long his lips are turning purple and he is collapsing multiple times a day. He has a black eye currently from one of these falls. We are worried about a more serious injury from the falling, and the daily, repeated lack of oxygen to his brain. We think he is getting a rush from the feeling and it is making him do it over and over. The doctors are puzzled. We are thankful he doesn’t do it while sleeping, which would be much more serious.

We finally have our nurses and workers in a schedule. Oliver started homebound school last week in his bedroom, which is now part classroom as well. Yesterday made one month home from the hospital, and my goodness has it been a marathon! After 30 days I think we are finally getting into a routine, but we fought hard for it. It takes anywhere from 1 ½ hours to 2 ½ hours to get him ready for the day, so our mornings are very busy.  We repeat it all at night, not to mention the middle of the day tube feeds and meds.

In the next few weeks, we hope to know more about the genetic testing results. So far only one is back, but it is not enough information for them to make a decision on the MNGIE diagnosis. If he does have a specific kind of Mito, then the only change in our current treatment plan would be access to clinical trials. Sadly, the treatment options are rather limited, and quality of life is the focus. There are days when we feel we’ll have many more years with Oliver, and others where he seems so fragile and his body is falling apart. Mito is such a weird disease, and we are learning how to understand all the nuances. The seizure monster dominated our life for so long; we now have a new and lesser known enemy in the house. I am sure as time goes on we’ll understand the complexity better and know how worried to be about all the unusual symptoms that are constantly popping up. When Ollie was diagnosed with TSC, I was a stay at home mom and had hours and hours to do research. This time around, my time is more limited and Mito is incredibly complicated.

The Gofundme campaign has been such a huge blessing to us. We have tried to send thank you’s to everyone, but fear among the hundreds of kind people we may have missed some. Please know how much it means to have this financial freedom to put together the very best care plan for Oliver.

Andrew will be starting his work on “Good Behavior” in the next few weeks (it begins filming in late March here in Wilmington). The show has lots of buzz, and Michelle Dockery from “Downton Abby” is the lead character. In the meantime, he has been helping at LPG and running point on so many of Oliver’s needs. I am sure when he goes back to 50-60 hour work weeks, we are going to have to recalibrate how we do things at home. There I go getting ahead of myself; all we have to do is take it one day at a time!

I have been trying to figure out how to balance running the company and all the new demands of Oliver’s care. It has not been pretty some days, but it is getting a little easier every day. If you think we look like we have it “all together”...I assure you there are days when we are a hot mess, clinging to sanity and drinking way too much coffee. But honestly I continue to feel like the luckiest girl in the world because of our incredible work family at LPG. I can barely talk about them without getting choked up; they’ve really shown such leadership and character in the midst of this season. I feel it every time I walk in the office...this is going to be a really special year at our company. The synergy of the team, enthusiasm and genuine hustle are incredible to be around...especially on the days when I feel sad and downcast.

In short, we are fighting our way to a new normal. The beautiful thing is, we aren’t doing it alone. We have you, cheering us on every step of the way. Sometimes that is just what we need to carry on. Thank you.