The Choske Family
Our Story
Flint has Heterotaxy Syndrome while heterotaxy is not the result of is heart defects it almost always causes them, his heterotaxy has caused the following heart defects; dextrocardia, double outlet right ventricle, pulmonary valve stenosis, common atrium,supracardiac total anomalous pulmonary venous return, and complete AV canal. This has led to a complicated congenital heart defect along with malrotation of the intestines and his stomach located on the opposite side of his body instead of the regular placement.
I found out about my sons complicated heart after our 20 week ultrasound in may of 2018. This broke my heart into many pieces. Flint has been located at Children's hospital in Minneapolis since the day he was born on 10/1/2018. Flint has been so strong and has had two surgeries as of now on his heart called a BT Shunt and a glenn shunt. Flint Has been on Ecmo twice now once for 5 days then again for 6 weeks due to some complications with his lungs leading to being damaged and creating holes that needed to heal. Flint has had a tracheostomy to help with breathing support which he is currently getting through a ventilator. We have tried to move to the home vent however due to more complications with his heart, it has not been possible. Flint also had a GJ tube place as well as his LADD procedure which straightened his malrotation out. Since Coming off Ecmo Flint has developed large amounts of Ascites (fluid build up around the abdomen). This fluid build up then puts pressure on his internal organs making it hard to breathe, urinate, and feed.
This has lead to more developmental delays. We are currently working on sitting up, reaching for toys, and have started learning signs. This will help him learn to communicate, we hope that the Pt,Ot, and Speech will help Flint to learn and grow.
We have now spent 400 days in the hospital, 2 Holloweens, going on two Christmas, And our first Birthday was spent here as well. The Hospital staff do an amazing job making it feel less sterile and more like home. We Just celebrated his first birthday. But through all this he has been a worrier and the happiest of babies. As of right now there is no end in sight to this long journey sadly. We are waiting to hear from other hospitals in the hopes that they may have feedback of other treatments we can try. Flint has lived in this hospital his whole life.
Flints Father and I try to see him as much as possible but sometimes this is hard we live over two hours away.We both have to work in order to pay our bills and keep up with everything, and as of recently we are down a car due to traveling induced damage to our vehicle. Before this we were able to have one of us there with him 3-4 days a week. As of now we are down to two days to see him. If we can reach our goal my dream would be to take unpaid leave from work and try to stay with flint until we run out of funds as well as catch up on our bills. We miss our little boy everyday that we are not with him.
Family Updates
It is with a heavy heart that I tell the you that Flint left this world on March 20th. Thankfully Austin and I were both there and were able to hold him while he left us for heaven. His parents will forever keep him in our hearts. We will miss you everyday Flint . I love you.
We are enjoying time with flint. We have recovered some from our set back in January.Flint is just enjoying his time with mom and dad. His new favorite show is Daniel Tiger and he even has the stuffed animal for playtime.
We heard back from our second opinions and unfortunately they did not have good news for us. So at this time we are taking each day as it comes.
We have made some amazing memories lately. Flint had professional family photos done thanks to the hospital. We recorded his heart rate, got baptized, got our feel and hands inked. That was a challenge as he tried to grab the paper haha.
Flint and family just celebrated Valentine’s Day. His nurses made us a cute little heart of his feet and gave us some delicious Chocolate.
Flint was making amazing progress since our last update. Christmas was great. We got to play on the floor. Flint was up to full feeds, got the OK the use an exerSaucer to help with muscles in his legs.
This Mom is Officially on a leave of absence from work until March 1st. Yay. I’m so excited to see what Flint can accomplish with his mom around all the time.
This first week we had a few set backs unfortunately. On my way to move to the cities for the next month or so, Flint's doctor called me to let me know he was having low blood pressures, his PIC line wasn’t working and needed to be replaced as well. I was so heart broken for my boy. When a line breaks or stops working it means he has to have a special person try to get a new one in his tiny veins. This becomes a problem as it means he can’t have feeds, had an IV line placed two separate times in to days, and had an ART line placed in his arm. So many pokes this week.
As we end this week Flint got his new line placed after many ties on many different days. He still can’t have feeds right now, is on a blood thinner IV for blood clots, his blood pressure is back under control. Not how I was expecting to spend this week but hopefully next week we can try to get back on track.
Thank you to all for the continued support.
pic of Flint and Mommy on Christmas Day.