Update on Nico :
find a cozy spot ..long read.🙏
We have been here since January and today is the 1st of March. Wow. I actually have a moment here where I can breathe .. To digest, perhaps embrace this new normal..
Well? not yet.. We are still trying to make sense of this all. And I don't honestly know if I ever will 💔but as it stands...
We are still here and dam it Nico is still here fighting !!!!!
So there is no time for crying... no time for stopping..
no time for eating...no time for sleeping...no time for questioning...
it's time to rebuild our broken hearts and restore our faith..
It's time for me to figure out how to get my son home..
Although his lungs are inrespiratory failure they are stable!!!! we are now dealing with the three bacteria infections that swarmed his stomach after the procedure. And his potassium andK are very low! His gut is distended and painful ..
The last two days have been a blur .. A congregation of doctors swarming outside his room waiting to speak to me .. Waiting to examine Nico.. bombarded with plan of care plan of action and of course my input on everything ! I didn't know which way to turn..
switchingoff from one complication to the next..
I couldn't catch my breath..
There was a point where I actually felt nauseous and dizzy lightheaded as if I was going to faint...
so winded from talking and listening ..everything being done ...Everything being discussed... just echoed through my mind . I couldn't grasp anything! All I knew is that my son is suffering.. My son is in respiratory failure..
My son is sick .. And I can't fix this !!! and that scares me..
In that moment of "merry-go-round" of doctors
I just wanted to jump off and go back to my son.. Lie right next to him and tell him everything is going to be OK ..
Maybe that's what I needed more than anything..
to lie down next to him because when I do ??
I feel his breathing , i feel his body healing in my arms ..
I feel his energy run through my whole body.. His will his fight his courage his bravery feeding my soul..
What a blur the last 2 days ..
So to bring you up-to-date.. The plan of action..
we are doing sprints of CPAPalthough he's on BiPAP permanently for nowhe must be on CPAP for two hours in order to do the barium swallow test to see how much he aspirates or what he aspirates into his lungs... Right now he went as long as one hour!!
we're so excited.. We are also waiting very patiently to hear back from the Children's Hospital of Philadelphia about the double lung transplant🙏😥
They started him on a binge eating suppressant in hopes of easing the cravings of food...
so far it's working to some degree! .. And added another medication for the daytime it's all about trying to psychologically chemically stop him from wanting to eat I know it sounds horrible I know it sounds torturous and it literally kills me but yes in order to save his lungs or from getting a double lung transplant we need to shut off that part of the brain from craving food .. With this we have to be extra careful he does not go Renal failure so blood work will be done daily...
He has a very low level of potassium and K due to the high levels of diuretics they had to give him in order to get rid Of the fluid that was in his lungs and around his heart.. So he had a very very painful to our IV push a potassium chloride and if anyone ever had that done You know how painful it is !!!!
but once again without complaining.. without a peep.. without whining.. Without crying.. without discontentment... he did it!!!!
My heart again shattered as his heart became tachycardic I watch his eyes twitch... his body wet from the pool of sweat coming off his body from the pain.. Ugh !!
asking every 10 minutes??
is it over yet 💔💔💔
how I wished I could have pulled that IV out but I know he needed it.. all I could do was talk him through it put my hands over him and tell him it's almost over.. And when it was ??he smiled he held my hand and took a three hour nap! God bless this child ..
God bless our warrior ..
God bless our little engine that won't stop .. That won't give up... Until tomorrow because there's more!!!
I'm literally mentally physically psychologically spiritually drained... More importantly though Nico actually fell asleep for the first time ever at 10:15!!!!
But I can't go one day one night without saying thank you to everyone who have been putting their hands together and praying for Nico ...
putting their heads together to help Nico... ..
With suggestions ideas support love events and fundraisers!!
AND The go fund me page!!!!!!
I don't know if there's ever a child in this world that can be loved by thousands from state to state from country to country ...as much as our Nico ..how blessed are we..🙏🙏
I cannot wait until the video collage is done and will be put on the go fund me page !!!!created by Jason A Martello and his team at MnMSocialMedia
Love to all...