Monday, February 19, 2018

Heart Month Spotlight- Matthew HRHS, Pulmonary Atresia & Tricuspid Stenosis

Happy Heart Month!

Today's Heart Warrior is Matthew, a transplant recipient. God bless the family who made the decision to donate their sweet baby's organs. Without that selfless act, little Matthew may not be with us!

We were diagnosed with HRHS, Pulmonary Atresia, and Tricuspid Stenosis. It was at my 24-week ultrasound, my regular OB said they couldn't see some of Matthew's heart. We were then transferred to Texas Children's Hospital Woodlands on Valentine's Day. They said it was something else but then we were referred to Texas Children's Hospital Main Campus.

Matthew was born with 8 hr labor on May 1st, 2017.

# of surgeries: 2; one at 9 days old-Norwood with BT Shunt, then he had his Heart Transplant at 5 months old,
Procedures: cath lab around 10 times; radiology: PICC line placed: at least 6 times.
Norwood BT Shunt recovery: 1 week on 18th floor then we were moved to the 15th floor to get listed for transplant. We were listed on June 6th, 2017.
Transplant was on Oct 3rd, 2017
Transplant recovery: intubated 5 days then discharged on Oct 25th, 2017

Our total hospital stay was 187 days; 177 days before discharge then admitted for 1 week after discharge for weight loss.

Matthew is my 1st baby. I went on a leave of absence from work while we were in the hospital.

When we got the transplant we had just gotten Matthew asleep for a nap when the team walked into the room and said: "It's happening!" We were like "What is?"  (being half out of it and trying to sleep some too), they then did a heart with their fingers and me and my hubby both couldn't believe it was happening since we had gotten so used to the routine of going to the hospital, spend all day and then leave late at night to our temporary home 2 miles away.

Our challenges: He didn't want to eat much for a while because he couldn't have much or it would upset his stomach. He was fed via IV- TPN and Lipids; rolling over was another small challenge.
Our Triumphs: He finally can roll over and after his last biopsy on Dec 26th he decided he was gonna eat good. He was NG tube fed for a while. We feed by mouth then NG tube feeds the rest of his breast milk. He eats tons of baby food and breast milk with infant cereal.

Life now is always busy. Making sure he eats what he's supposed to in order to gain weight, get blood work every month or twice a month unless they say he needs a Tacrolimus level and that can be up to every couple of days to every week depends on the level. He has a pediatrician but we're trying to find a better one who knows about transplant babies. After discharge, we started off with 10 meds total, 2 of which are Tacrolimus and Cellcept and he has to have those for the rest of his life. We're now down to 8 meds a day.

We have Early Childhood Intervention (ECI) coming 3 times a month and Physical Therapy coming to the house 2 times a week. We're trying to get Occupational Therapy out to the house as well. We see the heart transplant team and a dietician when we go to our appointments in Houston.