Jeffrey's Medical Update Page

Jeffrey's Medical Update Page I set up this medical page once before but I guess somehow it got deleted. Setting up a new one to keep everyone updated on Jeffrey.

10/18/2022

STABLE!!!! Feeling so grateful 🙏🙏

06/14/2021

💚💚💚Jeffrey gets his 1st infusion of Casimersen (Exondys 45-Exon Skipping Drug) this Thursday and then once a week for the rest of his life💚💚💚 We've been waiting 17 years for this!!!

Every boy is different so we don't know what to expect, but we're hoping it stops or slows down the progression and maybe even gain some of his arm strength back 🤞💚💪

Jeffrey has decided he does not want a port at this time, so it will be an IV weekly.

Prayers appreciated on Thursday 🙏💚🙏💚

12/16/2020

Jeffrey had his appointment today at Nationwide in Columbus. Best news that we could have received - he does NOT have a blood clot in his left ventricle and the spot they saw on the echo at Hillcrest Hospital has been on previous echos done at Nationwide. It could be excess scar tissue or even a wart on the heart (yes, a wart - never heard of that before).. But, they still want him on the warfarin and his INR is up to 2.47 (they want it between 2-3). ALSO, he is up to 89 pounds!!!! He was 82 at his appointment 6 months ago. He got a holter monitor today and we will follow up with cardiology in 3 months. God is Good ❤️🙏 Keep the prayers coming for my sweet boy!!

11/20/2020

Update: Jeffrey was discharged from Hillcrest this afternoon. They could not do the cardiac MRI because he cannot lay flat and when they tried to turn him, they hurt his back. They wanted to either sedate him and try again or do a TEE which would also require sedation. After consulting with his drs in Columbus, they decided that the best thing would be to discharge him with 2 shots of blood thinners given daily along with coumadin while testing his levels frequently. He will have to watch is diet and we will be going to Columbus for further testing once he has 3-4 weeks of blood thinners. Our appt is on Dec 16th. There is always a risk of stroke with blood clots but the fact that Jeffrey is feeling better is a good sign ❤ Thank you for all the love and prayers 😘

11/18/2020

PRAYERS NEEDED: Jeffrey was taken to the hospital by ambulance yesterday to Hillcrest Hospital with chest pain/pressure. They admitted him and have been running tests to see what's going on. His EKG was ok, enzymes were elevated (not unusual with heart failure) and his blood pressure was low. They did an x-ray, blood work, echo and DVT test. They found a blood clot in his left atrium. He will be on a Heparin drip for the next 18 hours. They will do blood draws every 6 hours. The doctors are consulting with his cardiac team at Nationwide Children's in Columbus. Please keep Jeffrey in your prayers....he is very nervous and quite upset. We are all trying to be strong for him, but as you know, sometimes life is just TOUGH! Stay strong my sweet boy - you are my HERO!

06/17/2020

Jeffrey had a cardiology appointment last week at Nationwide. It wasn't what we wanted to hear so its taken me awhile to write this post. He had an EKG and echocardiogram. His weight is at 82 lbs. The tests didnt come out as we would have hoped. His overall heart function has diminished and his ejection fraction is now at 27%. The doctor wants to be more aggressive in his treatment so they are stopping Lisinopril and starting Entresto. He will also most likely need a bipap at night so as to fill his lungs which will act as a cushion for his heart so it doesnt have to work so hard at night. They are concerned because he has been very tired lately. He is still having problems gaining weight as well. They want him to try his overnight feeds again but the doctor strongly suggests a permanet IV/pic line with a drug called milrinone. He will have to be closely monitored as it causes low blood pressure and his is very low as it is. So, the plan is to start new meds, try gtube overnight feeds and have another echocardiogram in 3 months along with seeing is pulmonary doctor about the bipap at that time. Please pray for Jeffrey and hope that all of this helps my sweet son 🙏❤

12/06/2019

Jeffrey's last appointment at Nationwide was on September 18th and I forgot to post on this page.....everything was stable 🙏 although his weight is still an issue. He pinky-promised us all (including Dr. Flanigan) that he would start to use his gtube more frequently (we're still working on this). They had to change one heart med to help with pvc's and coupling. Grandma joined us on this trip to Columbus and helped us all get through a very long (8 hrs.) appointment! Thank you, Mom!

06/20/2018

Muscle clinic day! And he weighs 80 lbs 💚💚

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Cleveland, OH

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+12167895400

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