Where do I start?
I guess I can say I started when I went to my 20 week scan... The medical assistant couldn't find a proper heartbeat on the left side... She didn't have the heart to take my level of excitement down to a devastating blow... I went home and a few hours went by when I got the call...
The doctor told me she was so very sorry but the baby I was carrying has a very rare heart condition called "Hypoplastic left heart syndrome" where the left side of the heart does not form properly...
My intuition has never failed me... For some reason a sense of calm came over me.. Everything was going to be okay....
I never could have imagined the fear and pain I was going to experience but I am so glad I never went down the abortion or comfort care medical professionals were pushing me to do... Trying to convince me there was no hope! I left that up to my son. He was born 6 weeks early on April 15th 2023... He was so tremendously sick... But I knew "As long as I stay with him, hold and love him and give him strength he is going to be okay"...
He was to have his first surgery (Hybrid) within the first few days... These babies cannot survive without this procedure along with 3 major open heart surgeries with the Hybrid, Norwood and hemi fontan (some places call a glenn) before the age of 1...
Days and weeks went by.. My sons still here while I was given empty promises of surgery as long as he hit certain milestones... He would hit them... But new milestone were required.
I began to feel something wasn't right... The surgeon’s always having an excuse why they couldn't meet me... Finally I demanded to speak to a surgeon as we have no more time... My son shouldn't even be alive...
A surgeon comes in and I firmly but politely asked what the plan was and what I was told... "Ma'am, I cant speak for why others said what they said but we were never going to do the surgery"!
I was told there is no hope and nobody will be able to help my son! One doctor told me the most lovable thing to do is put him on comfort care... I was told it was okay to get mad! My response "I don't have time to be mad.. I need to save my babies life. I will not present myself as an out of control mom.. I need to save my sons life"...
I was in a panic. Scared where no words can express! Now many institutions will do 2 second opinions.. I wasn't having it! I researched the US Cardiology News Report and top medical institutes and brought in 30! I was told "You are going to have to do it"... Fine! So I did!
I spent what seemed like a life time digging and researching for personal emails to surgeons... I wrote many 2nd Opinion emails but I knew I needed to reach the surgeons personally...
Days went by.. TX said "No they couldn't help" Boston said "If he was their patient they would put him on bypass and try but they didn't have the beds".... I knew then "there is somebody out there that would try"... A few more places during the next few days went by.. I got a No and another No and another no... Feeling defeated and hopeless... I couldnt bare it anymore and ran to the elevators... I collapsed.. Crying uncontrollably...
After sometime I wiped my tears, got myself together again and went back to work.. I wasn't giving up!
The next day as I am walking outside I check my email... I dropped to my knees literally and screamed "Yeeeeees" as I cry!
One of thE best medical institutes (MOTTS Michigan) would take him and felt they could intervene and help my baby! Then a doctor came in and told me another medical institute said yes! The yeses were coming in...
My son had no time... Nobody even knew how he was still here... I leaped and made the decision to have my son transferred across the country to Michigan!!
I called insurance and told them I wasn't playing this deny game. My son had no time! I called 4 times a day!! The medical director got involved to help the process! The weekend hit! Everything stops with movement on the weekends! I want to jump out of my body... I am literally watching my son fight for his life so I can get him the help he needs!
Insurance approves and flight is scheduled then BAM! My son codes... 13 min CPR and 7 epi hits before he came back... The doctor was only going to give him (30 min) before calling it... Oddly after coding its as if his body reset itself... Things were slowly improving in many areas! Then BAM! He had an infection and wasn't cleared to fly! Terrified... Asking the universe to please help!
Eventually he was cleared to fly... I am terrified to fly but that didn't matter.. Get my son there... Everything is planned. Planned Pick up first thing in the morning.... Morning comes.. Flights canceled due to communication issues! WTF!!!
By the end of the day issues were resolved and they came and picked us up that morning... MOTTS was told Eligh most likely wouldn't make the flight...
Eligh did better then I did on the flight...
He faught like hell and he wasn't giving up!
His surgeon (See the news link as we made the news) said he was so sick she didn't think he was going to make it!
Months went by, he went through a hybrid and his first open heart surgery (The Norwood) It wasn't a fun journey at all but we faught together as a team to give Eligh the best outcome!! MOTTS staff is now family!
We were able to finally go home for a short time but Eligh was in a very risky place.. He had weekly cardiologist appointments etc. I never slept as his pulse ox would alarm me throughout the night.. I would have my hand on his chest while he slept so I could feel him breath.. When I say I didn't sleep I mean I never slept!!!
We went back to MOTTS for another open heart surgery!!! The hemi fontan... We got home and he is thriving...
We were going to do his 3rd open heart surgery (Fontan) in 2026 but Eligh is on a special heart medicaid program and Elighs social security case worker warned me he very well could lose his coverage due to the new administration! So everyone felt the safest thing to do is get it done this year! September 2025.
I am struggling financially.. I thought I had more time... But I dont... I refuse to fly... I am terrified of flying even more now then when we first had to fly... Id prefer getting there in one piece.. Just too many planes crashing right now...
I really need help with funding for a room on the amtrak. I have to keep Eligh as isolated as possible so he doesn't get sick before surgery or they can't do it... Its 65 to 80 hours on the train... Driving isn't an option and his medical team would never OK that.. Its to risky and having a 2 year old sit 8 plus hours a day in a car (YIKES)...
I was shocked to see the cost.. $2600 each way... I have reached out hoping for sponsorship but cannot get a hold of anyone...
I need to get my son to/from MOTTS and rent a hotel room for 2 weeks after discharge incase something goes wrong post surgery. Seattle doesn't have the expertise and I have to play this smart... This is his life and I am feeling pretty anxious!
I stay bedside with him in the hospital.. I never leave him! So I don't need help with hotel while he is inpatient. Also, Ronald McDonald has helped with a room when we first got there which families at times have when living in the hospital... I cant leave my son. He needs me. So I will stay in the hospital with him until discharge...
But there is no services offered for a 2 week hotel 2 week stay after discharge... From Amtrak, hotel, car rental.. Its just overwhelming so whatever help I can get is appreciated!
I know this is a lot but hoping I can get some help to elevate some pressure!
The news link is below if interested!
If you made it this far I appreciate you for taking the time to read this, any donations and/or a share!
With Love!
Organizer
