Please pray for my High School friends Son. Here is what he is dealing with.

Jonathan update…

SO much to say, will try to be as brief as possible.

We are still in the hospital.  Jon has pneumonia.  Last Monday, in a conversation with his lung doctor, it was determined he needed assistance in breathing. The consequences of Jonathan being put on the vent are huge so hopefully to keep that from happening they put him on a BiPAP machine. The lung doctor told me what I pretty much already knew and that is if he went back on the vent he would come out with a trach and this time he would not take the trach out… EVER! IF he were to end up with another trach it means that Jonathan would have to live in a facility where he could get Dialysis in that facility for the rest of his life. There is not a dialysis center in the state of Nevada or California that will take a patient with a trach in the outpatient clinic for Dialysis, even if the trach is capped and they are on room air. At first the BiPAP machine was to be left on during the night and during the day he was to use a simple cannula to get oxygen. The first day they tried a high flow cannula and he did so well that the next day they decided to do a regular cannula.  At that point he was downgraded from ICU to IMC.  The pneumonia seems to be improving a little but he is not.  His oxygenation is good but his blood gases are not.  Yesterday all attempts to get him off of the BiPAP machineresulted in a critical turn in the blood gas.  So, as of now he is on bipap full time.  The lung doctor says that the issues he has going on right now are neurological and not an issue with his lungs. He feels that this issue goes hand in hand with the fact that he has been nonresponsive to anyone/anything since being brought in. So, once the pneumonia is completely cleared he more than likely could still have these breathing issues if the neurological end does not show improvement.

Our other issue is his mentation.  I was so sure that after being in the hospital for a little over six months that there would be if not huge at least pretty significant changes in him. Jonathan was home 5 1/2 weeks before being admitted this time. I was having a pretty hard time the last couple of weeks because I had to come to the realization that the improvement I was hoping for while there was a little bit was not anywhere near what I was thinking there might be.  Every once in a while there would be brief glimpses of the old Jon but for the most part even though I know he’s in there somewhere there were no outward signs of it.  Over the years I’ve pretty much gotten used to having to accept new normals  is in our lives but they were mostly physical issues and this time it’s just not the case.  I am pretty much mostly just devastated as it just seems like a huge chunk of him is gone. Oh, there are moments of him being lucid where I will say “hi Jon” and he will respond to me crystal clear and say hi mom. He almost always will follow commands and do things that you ask him to do.  That being said he shows no interest in eating, and he never smiles or laughs and certainly no happy squeals, things that we would laugh at and say during our favorite movies I still do and say hoping that he will do the same and he doesn’t,  there are times when I’m just not even sure he realizes he’s in his bedroom.  I will catch him looking around and if I tell him to look at his Disneyland sign or to look at is Michael pictures sometimes he looks in that direction and sometimes he doesn’t. I honestly do not think that he’s watching his movies when I put his favorite movies on. He spends a lot of time just staring.  On the plus sign when he’s appearing to be somewhat alert I will ask him to give me a kiss and he will SOMETIMES come towards me and pucker his lips and I cherish those more than I can say.  He rarely, if ever, initiates any kind of conversation.  If I ask him a question or tell him to say hello to someone he may or may not answer me or tell them hello. If he does talk it’s a maximum of 2 to 3 words at a time and he actually prefers to shake his head yes, no or wave hello or goodbye to people. I am basically just crushed and heartbroken.  He is still here, and I am eternally grateful for that, yet I feel as if I am grieving at the same time for the huge part of him that may be gone.

Back to the health…Yesterday was a bit challenging and he almost ended up back in the ICU. Right now it would not take much of a setback for that to happen as he seems to be teetering kind of right in the middle of ICU and IMC, where he currently is. They just did another blood gas so I am eager to see how that one is. I have not seen the long doctor yet so I don’t know what the plan is.  Ever since he has been brought here, a week ago Saturday, we have also been having pretty significant mentation issues.  He is pretty much not responding to anyone/anything.  He has also been doing a lot of twitching or having spasms/tremors.  I am trying to be positive but I am struggling.  SO much on the line.  I spend EVERY waking moment praying for him

to come around and get back home.

I know you already are and yet I’m gonna ask again please, oh please, pray he pulls through this and gets to come back home. Please ask everyone/ anyone to do the same. Please pray that I have the strength and the wisdom to help him through whatever direction he is headed because right now I’m feeling pretty scared, shattered and helpless.  Sorry for this being so long and for my appearing to be some negative.  I am just not in the best place right now. Love you all and appreciate you more than you could ever know!

Thank you Sherry Griffith