Sitting bedside, watching Alyssa go through her dialysis treatment. So far it has been a rather uneventful day, which we are thankful for as we all need to catch our breath. Today's goal remains unchanged from yesterdays...get the blood pressure under control. This is a very tricky process as she is hooked up to machines all day that while performing their desired function, also pull the meds out her system. It is a very delicate balancing act!
Not lost in the shuffle is determining what caused all this to happen in the first place. Is it TTP or HUS and most importantly, how do we treat it so that she doesn't relapse? Doctors here have been working with colleagues at several other hospitals, including Mass General in Boston. They are also in discussions with a pharmaceutical company in Cincinnati that is doing research on a specific strain of HUS, the one in a million variety. Typical HUS may only be seen by a physician once in their career. The A typical version, which the doctors are leaning towards, well, let's just say that we're in rarefied air here, which seems to be a Deffenbaugh tradition lately.
Alyssa isn't the only young adult fighting a battle here at RGH. As most of you know, the 23 year old city police officer that was shot in the head Saturday, is also here. We have seen first hand the outpouring of concern shown by his family members, friends and especially from the law enforcement community. The first day the waiting room was filled with at least 200 fellow officers, the governor, mayor and all sorts of media. Our little waiting room instantly became everything from a grieving room to a media center. Although the number of visitors has diminished, there are still always at least 20 fellow officers here showing their concern and respect to the family. As with Alyssa, reports each day are getting better for Officer DiPonzio.
Whether it's through a senseless act of violence or an unexplained disease, our kids are just too young to have to go through these types of challenges. As parents, you feel powerless to help them, but are thankful for the type of care that they receive here at RGH.
Please keep both of them in your thoughts and prayers.
dd
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LYSSSSSSSSSSSSSSSSSSSUH i wasn't sure if you came on here but I just read that you read it everyday so HELLO I love you so much I Have this as my homepage now haha. Well i guess that isn't funny but neways... I was so happy to talk to you last night it literally made my day I hate knowing that you are in the hospital and going through all of this and I just cannot imagine what it is like. I wish there was something I could do!! You are seriously so strong I am really looking up to you for this I don't know if I could ever be that strong!!..I hate not being able to talk to you everyday even if it is just online or texting. I miss you soooo much you have no idea!! I am comin home this weekend and I want to visit you hopefully you will be out of ICU by then? I hope you have stopped seeing the spiders and people with long fingers omg I would be so freaked out. Anyways I love you I know you will get better as soon as you can since it seems like you just keep on defeating the odds. You are like a little superhero.. Oh also my mom wanted me to tell you that she tried to write a comment but she couldn't get it to work but she loves you and is praying everyday!
ReplyDeleteI love you little busha sooo muchhhhh !!!!!!!!!
-------Steph<3<3<3<3<3<3
Lyssa,
ReplyDeleteCheerleaders are the toughest athletes, with the biggest hearts...these traits have served you well. Keep pushing forward. We love and support you every step of the way.
Dave - Of course it is something rare, she is a Deffenbaugh! We don't do anything simple or straightforward. Unusual,rare and one in a million are our specialty. In Alyssa's case she is just EXTRA, EXTRA special.
Thanks for sharing with us. Don't forget to take care of each and every one of your lovely family. All our best..Donna, Brian, Kev & Jill
Dave and Debbie,
ReplyDeleteDon't forget, please let me know if you need someone to sit with Alyssa and keep an eye on things. I am only 6 min. away from RGH, day or night. I can "guard her port" ;-}
Glad to hear it was an uneventful day. Debbie A.