As many of you have seen on Amy’s post- Baylen is facing some tough medical issues and is heading to his 7th surgery tomorrow (as of this writing). Amy & Matt both work full-time and have spent countless days and hours in the hospital by Baylen’s side. Obviously, this means the medical bills are racking up and will continue to.
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See Amy’s Facebook post for further explanation on the medical aspect of Baylen’s situation.
As always, we band together when one of us needs it most!🫶🏽
Updates
From Amy’s FB post, explaining in detail:
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#BAYLENTHEBRAVE
Being a parent to Baylen is not, and has never been, for the faint of heart. The boy was running by 10 months, doing everything by himself, including climbing counters and walls, black eyes and chipped teeth he is the picture of a truly rowdy and rambunctious child... In fact his middle name was supposed to be Wilder which would have been fitting.
His heart is huge, he is very intelligent, witty, extremely healthy (thank God), naturally athletic (we've truly enjoyed watching how incredibly fast his hands were and man could that boy run.) Matt and I often just watched him while running the bases at the field and joked that he was like a gazelle. What I wouldn't give at this moment to be watching him run those bases right now.
On October 8th our lives were changed. The boys were playing in the back yard, running around spraying eachother with the hose (of course because we were getting ready to leave for the afternoon 😒). I was in the shower when I heard a commotion in the living room.
Banyan was completely panicking, Baylen was sitting on the floor and Matt was covering his ankle with a cloth, pale in the face. When I looked at Baylen he was calm and begging me "mom I don't want stitches, please ..no hospital". Matt shook his head when he looked at me and uncovered the wound.. I lost it. The wound looked odd shaped as if the pot had gouged out a large chunk of skin and was visibly filled with dirt and clay from the pot, with no bleeding.
Banyan explained he had the hose and Baylen jumped on our back step to come into the house sort of running from being sprayed..he slipped off of the step and fell with a large terracotta flower pot onto the concrete pool deck. The pot broke on his ankle and it cut him to the bone.
Within an hour the er was cleaning scraping and stitching him up. The boy was incredibly brave, not a single tear or twitch. We left with three layers of stitches and went home on crutches, believing that we had survived our first boy injury.
Over the next 10 days the wound changed a bit and our pediatrician sent us in to get an xray because he believed the wound still contained fragments that could be causing infection.
On October 21st we were admitted into the hospital, and on the 24th ( the day after his 7th Birthday) we had our first surgery to clean out the wound. Cultures were taken and we were discharged that night.
On October 27th we were contacted by infectious disease at All Children's and informed that the cultures showed the growth of mold. Things get a little confusing at this point but over the next week we are re-admitted and the treatment plan changes. We are told they are unsure if we have bacteria as well as mold but it is explained that mold is typically slow growing but very stubborn and complicated to treat.
On November 5th they discover the type of mold and the severity of everything shifts again. We are given the name #Scedosporium, caused mainly by soil and told its an aggressive fast growing mold, and its incredibly rare. This is something I've learned is fact because no one knows exactly what to do to treat it. We try to stay educated without reading too much into the medical journals and literature.
If you google you will find "Big 5 killers of humans" The Infectious disease team tells us they are getting us literature thats more applicable to our child claiming the stats are "typically" based on immuno-compromised children... that claim was two weeks ago and we still have nothing because, well I believe the literature doesn't exist.
I want to preface this frustration by disclaiming my anger is with the infection, the hospital and care at John Hopkins All Children's has been top notch and our medical team is working together to try and battle this with us. They are collaborating with other teams, ID Doctors and Surgeons in various cities all over the US. The scariest part is.. there is no real consistent treatment.
The belief at this point is that aggressive repeated clean outs (flushing, scraping of damaged bone) in conjunction with the right antifungals is the best chance we have at getting ahead of it. But.. we know, even if things start looking better and he responds to the treatment, we are looking at a minimum of 8 months of treatment just for the infection and then who knows how long in rehab for the foot. (And thats BEST case scenario).
We are 28 nights in the hospital at this point.. 6 surgeries in... (#7 coming Tuesday) 3 MRIs.. tons of bloodwork.. a healthy immune test.. and a Broviac line because he blew four IVs in four days unable to tolerate his newest IV meds... we have tried the following antibiotics and antifungal... Keflex, augmenton, ancef, Voriconozole (spiked his liver), clindamycin, bactrim, (currently taking) posaconozole, unasyn, terninafine and micafungen.
Everyone in my little family is shaken.. Matt is the rock, or doing a good job pretending to be...as a mother I blame myself for letting "boys be boys" and always taking the laid back approach... Banyan (my sensitive child) has been in pieces fearing he caused the accident with the water hose.. but watching my strong willed baby cry himself to sleep many nights telling me how sorry he is for being wild and its his fault all these things are happening, is the hardest.
Most nights I nap next to him in the hospital bed and do my best to hide my terror of tomorrow... but if you know us, you know the boy is my little soul mate and sees right through it. Hes tough, smart, and as brave as they come... but this one is taking the wind from his sails and nothing hurts me more. I wish I could take this from him.. We are working on worrying only about the things we can control.. I try to build him up and tell him he needs to talk to other kids about how to be brave so he is making short videos he wants to share with other kids going through scary things.. This one is from Sunday night.
We pray together, we breathe through pain together, and we meditate to help us sleep. Some days I can't return calls or texts, its exhausting just going through the motions.
**For those who have asked, yes amputation has been discussed but, per the orthopedic surgeons, may not even stop the infection. We need other ideas. Also ... reiterating the fact that he is not immuno-compromised. (I am adding because I am getting wonderful feedback from many medical professionals but I feel these details need to be emphasized)
I want the story shared because I hope there is someone out there... a microbiological genius or a regular Joe who will say something we haven't thought of. Our medical team is round tabling all the ideas.. something will stick... something will work.. it has to..
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Will be praying for this beautiful child of God.
I live in Harford County, Md and I’m about forty minutes away from Johns Hopkins so I know how great that hospital is, especially the Children’s Hospital. I know that you’re absolutely terrified but your child is in some of the best hands on this planet; the only physician greater than they is the Lord Jesus Christ Himself, who is greater than every doctor and nurse on this planet combined. I will pray for your son, and I am sure that there are many others who are also praying for him as well. I wish that I had the means to do more, but I don’t - I’m currently out of work and things are hard. But this is far more difficult for your family than my being turned into a cripple by PepsiCo Frito-Lay and then their firing me for being a cripple. Compared to the fight that your child, your family, his doctors, surgeons, and nurses are waging my boohoo-pity is less than nothing, so I wanted to help even in my meager way. Even if you guys use it to bring him his favorite meal from Burger King or to buy him a fun book to read then that’s money more than well spent! May God bless you, your precious boy, your family, and his entire medical team. God is good all of the time, even when we cannot understand why He allows something that is as terrible as this mold and this infection. Talk to Him and ask for His healing and for His will to be done. If you are in right fellowship with Him then He will hear your prayers. I don’t believe that it is His will for your son to die; obviously, I don’t know that for sure as He doesn’t have any reason to tell me His plans, but I just feel that your baby boy will be okay in the long-run. The battle may be absolutely vicious and there may be days in which it seems like you are facing certain defeat, but the war is not lost and I don’t believe that it will be lost - I believe that you guys will be victorious. Be brave, always, and be grateful to the Lord our God always, even on those days when you may feel that He has forgotten you. He hasn’t forgotten, and He never will. I look forward to hearing about his full recovery. God bless you all.