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Update On Sara


momofsara
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First of all, thanks to all of you who have sent us your thoughts and prayers. Sara continues to be in the hospital. Her fever is better under the influence of antibiotic heavy-hitters such as Levaquin and Vancomyacin. She continues to receive IV fluids at a good pace. Her appitite is ok, however her mouth and throat is so sore its hard for her to eat. Ice cream seems to be the food of the day... She underwent surgery on Thursday to remove the Groshong catheter from her chest and replace it with a temporary central line. Blood is being drawn regularly to monitor infection and when the doctor is satisfied her blood is "clear" she will be taken back to surgery for removal of the central line and placement of a permanent port. This should help with the repeated infections( I hope ). She tries her best to remain in good spirits, but it is taxing her fortitude. Shes actually emotionally spent. For that matter, so am I...... But we remain hopeful for an improvement in her condition. The nurses and staff have all been very supportive and helpful to both of us and we do appreciate that.. I'm home for a bit of a rest and a good, hot shower. I've showered and changed clothes at the hospital, but always with an ear listening for Sara. Anyway, thanks again for your thoughts and prayers, just keep 'em coming. Will let you all know when I have more to report....

Susan

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while i've checked in no less than 30 times for updates i'm realizing now that i never actually posted my support, prayers, love, hugs, tears, etc in your post telling us of sara's hospitalization. i hope you know already though that they all of these things & more are coming from me to you across the miles. i wish so badly that i could be of more help in some way. as much as others are able to offer their support, thoughts, prayers, etc, very thankfully few if any of them have actually dealt with what sara & you (& the rest of your family) are dealing with on a minute by minute basis right now & in recent months. i am not saying that to at all diminish anyone else's sentiments, but i've been there - as has my family - and i feel so deeply all that you & sara are dealing with to the point that it literally hurts. i know the intensity of how difficult & scary it truly is & wish that i could some how bottle up the calmer months that i have somehow reached & send them your way.

i will of course continue to keep you in my thoughts & prayers....for physical as well as emotional strength & sustenance now & moving forward, and for the current antibiotic regimen & line removal/ replacement to truly bring to a close the months of unrelenting fevers. it may seem like a distant hope but it IS possible. i can't recall how detailed or blunt i've been with you in regard to how dire all of my physicians thought things were for me in the midst of my year of seemingly unending infections, but largely they saw no reason for the repeat assaults to come to an end and as the severity of the complications & multiplicity of body system involvement seemed to be escalating they felt it was a matter of when, not if, a bout of sepsis would kill me. i was offered hospice, & just a few weeks ago one of my doctors looked at me with a bit of amazement in her eyes while she said that she never would have thought i would still be here. but while i still have a prognosis that would be considered poor by just about any "normal" estimation, compared to where i was a year and a half ago or so it's incredible. while none of us know for sure our hour or day, i no longer feel like everyone is waiting for me to die. while the possibility of sepsis rearing its ugly head is always a reality for me it's no longer the first thing i think of when considering what i might be doing in a month, or two, or even six. while my underlying health situation is still degenerative, based on how i've been doing over the past year it seems realistic to think i may have years left rather than only months or weeks. you get the point. what i'm getting at is that there is ALWAYS hope. despite how you can't feel anything but that you're drowning in the world of fevers & infection & whatnot at the moment it may not always have to be that way. my situation was considered about as bad as it could get & i had multiple episodes of septic shock wherein several of my body systems shut down entirely, so if i was able to be stubborn enough to reach the other side then sara can be too (as can you.)

well....i'm feeling like my words aren't of much help & only hope that they aren't hurting. the last thing i want to do is introduce new fears & concerns so hope that i haven't done that. if i have i am so very sorry & will hope & pray that you can press delete on anything negative my ramblings have put in your mind. i guess i'm just writing b/c i want to be doing something & don't know what to do. i would be more than happy to talk to you &/or sara at any time if that might ever be helpful....not that i would have anything particularly helpful to say but i know that i would have paid a million dollars to connect with someone who had "been there, done that" when i was in the land of fevers for so many months. i'm sure that my mom would be happy to talk with you as well if you'd like to connect with another mother dealing with the situation from that perspective. i must applaud you though for how much you've been at the hospital. my parents & especially mom were/ are always there as much as they can be but they have their limits which come long before the need to change or shower while there. i have to admit that i'm a bit jealous of your constant watch; i'm very independent by nature but when i'm that sick that goes down the drain real quick & i've spent more than a few nights in the hospital after everyone had gone home & i really felt like i still needed someone by my side. when i feel even a tad bit better i'm ready for privacy & kicking the parents out but ah well.... i am now totally digressing. bottom line is - whether she tells you directly or not - it means the world to sara that you are there as much as you are.

i mean it when i say that you are welcome to call me (or of course write) any time.

hang in there the best you can. i KNOW it's easier said than done at times, but you CAN do it, as can sara. please send her my love & prayers & strength & sunshine & so much more.

thinking of you both around the clock....

;) melissa

p.s. so glad to hear that, in the midst of a horrible situation, that the nurses & staff are treating you well....it can't fix things but really makes such a difference, as you well know. do you feel good about the team of doctors on board as well? not so much in re: to being "nice" per se but in regard to their being on top of what's going on with sara, treatment, etc?

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Like Melissa, I was also relieved to hear from you Susan. It seems like they are finally on the right track after all of those weeks and months of telling you it was just autonomic. You both remain in my ferverent prayers. As a Mom, my heart breaks for all you are going through. Please keep us posted and know we are all fighting with Sara.

Big Hugs-

Julie

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