We are home. And Ford is thriving!
We were discharged on Friday, August 23rd. We spent this weekend enjoying the amenities of our own home, mostly our own beds & not paying for coffee! 😂 And have enjoyed watching Ford become his normal self: full of smiles & laughter and an appetite that could put a grown man to shame. His sass is back full force and he makes sure to let us know when he wants to be the center of attention.
We are already seeing the benefits of his surgery. Ford has always tucked his chin down after a few seconds of holding his head up due to the pressure on his brain. Y’all, we can see his neck now because he holds his head up! His balance has also improved, he is sitting up for longer periods of time and reaching for toys without toppling over. The size of his forehead and even the shape of his head have changed. He feels lighter when we pick him up because he’s supporting more of his own weight. We pray the ETV surgery continues to work as we can so obviously see the benefits.
Since being home, Ford has had some pretty intense nightmares. The hospital stay(s) were traumatic for him. The ONLY thing that comforts him is snuggling his head as close as he can to us and rocking him back to sleep. We hope that as we gain more normalcy and get back into our routine, the nightmares will subside.
Thank you again from the bottom of our hearts for the love, support, and concern during this awful experience. It takes a village to raise a baby and y’all prove time and time again that my village rocks! ❤️❤️❤️
Today, I broke.
There were many times in Ford’s hydrocephalus journey where I thought I was breaking. I think the anticipation of his surgery and then the adrenaline during his hospital stay kept me from completely falling apart. But today, after discovering his incision leaking and swelling, I just broke. I sobbed uncontrollably while staring at my child’s surgery incision, knowing that something was wrong… again.
The next hours seemed to drag on for days. I called Ford’s neurologist & pediatrician offices in hopes to find out if his incision was infected. When I called to make an appointment with my pediatrician, the receptionist told me she was out of town and would be back tomorrow. So I scheduled an appointment for tomorrow and asked to speak to a nurse. The nurse let me know that ultimately the surgeon would have to be the one to determine if the incision was indeed infected. It took 4 hours of calling & leaving VM’s for the neurologist’s nurse to get back to me. She said that the doctor took a look at the pictures I sent and he “thinks” the incision looks ok. BUT if it continues to leak then we’d have to go to the ER right away.
I lost my breath. Did she just say ER? I can’t do it. I cannot pack one more bag to go to the ER. I cannot sit for hours on end with NO answers only to be admitted to the hospital. I cannot watch an IV team unsuccessfully try to get an IV in his vein. I cannot wait for doctor after doctor to tell us they don’t know what’s wrong. I cannot see the life drain from my son’s face again. I cannot watch him fight for his life while it seems no one cares. I cannot go back to the ER.
My husband made the decision to go to our local Kids Insta Care so we could see a doctor BEFORE going to the ER. We were seen within 10 minutes and it was immediately apparent to the doctor that Ford’s incision was indeed infected. He prescribed him an oral antibiotic and we were on our way.
Everything is ok now, right? He isn’t running a fever. He has an antibiotic. He is OK.
But I am not OK. I’m broken. I realized today that while we’ve been home for 3 days I haven’t really slept. I wake up sweating after having awful dreams or I wake up to Ford screaming in pain although he is fast asleep in his bed. Flashes of Ford ripping his body from side to side in pain haunt my thoughts. Thinking of the life literally draining from his body and just wondering how the hell I’ll get through life without him. When picking something up I realize my hands are trembling from yet another anxiety attack. My hair is actually falling out in clumps, I’m sure from stress. I am angry at myself; if I was more healthy when I got pregnant, could I have prevented this? I am devastated that my son has to endure so much pain and so many trials. I feel guilty for even feeling so broken because I know there are mothers out there that have children with more severe medical challenges.
Today, I am broken but I know I can’t stay broken. I have to tape all the broken pieces back together because I am a mother & I need to continue to advocate for my son and get him healthy. Today I am broken, but tomorrow I must be whole again.
Day 5 post op was awful & last night being so scary. Ford had another episode of convulsing in pain and projectile vomiting. He couldn’t hold down any liquids by mouth – everything had to go through his IV. His oxygen & heart rate kept plummeting. His nurse worked fast & diligently to get him back to base line. I sobbed and was terrified that I was losing my son. I selfishly asked God why he would give me something I so obviously couldn’t handle. I was breaking.
And then our prayers were answered! Ford’s surgeon came to see us this morning and believes Ford has chemical meningitis. Chemical meningitis can occur when a small amount of blood gets into the spinal fluid during surgery. His team of doctors have begun treatment for this and the results are astounding! He is tolerating fluids by mouth & getting his appetite back. His cheeks are rosy & the sass is strong. He laughed for us today & was awake for longer periods of time! He is still in observation but we all think he’s on the road to recovery.
Each mountain Ford is given, he moves it. ❤️
Early this morning Ford was admitted to Primary Children’s… again. He began violently vomiting again and couldn’t even keep down a sip of water. He’s been lifeless & moaning/uncomfortable all day. We have ZERO answers yet.
All I keep asking is why? Why MY baby? I want to trade places with him so badly. I want him to be happy & healthy. 😭 I’m absolutely heartbroken.
Endoscopic Third Ventriculostomy (ETV): A surgical procedure to treat hydrocephalus by creating an opening in the floor of the third ventricle. The opening allows the cerebrospinal fluid to drain from your child’s brain.
This is the surgery Ford had done on Friday. He had an MRI on Saturday to ensure the surgery is working properly and it is!!! Because of Ford’s age, there is a 70% chance of this procedure staying successful. If the fluid continues to drain for 6 months, there is a 99% chance he will not have to have surgery again. After a year of draining, it would be extremely rare for Ford to ever have surgery again for hydrocephalus. My prayers were answered that he came back to me & now my prayers are that this surgery continues to work. ❤️
Update from Sunday: Ford was admitted to Primary’s on Sunday for Ilius. Ilius is when the intestines are “stunned” after a surgery & they do not work properly. He was observed for over 24 hours & we worked on getting his bowels moving again. Also, his pain is back under control. He was discharged today & we are home. He is doing well and slowly getting his appetite back. He is having severe separation anxiety due to being whisked away for 3 days of procedures. He goes through waves of pain & discomfort but shows glimpses of his sweet personality. I’m so thankful to call this sweet soul my son!