Prayers continue.
Prayers continue.
These are the entries from the Carepage, for those of you that can't make it over there. I will post updates as they are given.
This is the first entry, from May 17, 2005:
Hello, everyone. As most of you know, it's been a long, nightmarish week here at Children's ICU. The miracle is that Sam is still with us, and is making small improvements each day. I'll begin this with a little background, then will try to update as often as I can; please feel free to leave messages. The support of our family and friends means so much to us.
Background: After enjoying a wonderful first Mother's Day, Sam had an uneventful Sunday evening; she skipped her nap, and fell right to sleep that night after a bath. She'd had a cold since earlier in the week, w/an occasional low-grade fever and runny nose. Nothing major. I called the ped's office a couple times, but they assured me that it was going around, all the kids had it, etc., etc. Monday morning was a different story; she had a high fever, was vomiting, and was lethargic. In short, she wasn't herself at all. Ped's office still said these were the kinds of symptoms kids were having--which was, and still is, true--but we'd never seen Sam like this, and we took her to Mercy Clermont's ER. They brought down her fever, and tested for a couple things, but found nothing--but then a small rash started to develop. It was just a few small marks in a couple places. We also found out the week before that Sam has a platelet disorder, and this concerned the ER doc since it's a rare disorder. He decided to have her admitted to Children's, and we arrived in their ER early that evening. Immediately, they knew something was wrong--the rash had worsened, and they suspected it was meningitis. They told us it was unlikely she'd survive the night, but luckily, she's strong, has tons of folks praying for her, and is under the care of excellent doctors. The diagnosis: meningocoxxemia, w/purpura fulminans. (As many times as I've seen the words written down now, I continue to screw up the spelling, but those are close.) She has the neiserria form of meningitis, which is the most serious. About 20% of us carry the bacteria in our noses or throats, and suffer no ill effects from it. Unfortunately, it enters the bloodstream of some--Sam being one--and causes rapid, aggressive infection and damage. There is no rhyme nor reason--simple bad luck dictated this. It's unrelated to Sam's albinism or platelet disorder.
Moving on to today: the doctors and nurses are amazed that Sam is still w/us, and continuing to make small strides. She's on dialysis (though they hope the kidneys will come back), a feeding tube (she had a BM, which is a good sign), as well as a breathing tube, and she's been receiving blood products. They are trying to wean her from her various tubes--her lung and heart function is good, her bp is stable, and though she hasn't had a CAT scan yet, she grimaces, flinches, coughs and moves her eyes a lot, and they have every reason to believe the brain is okay. They are removing fluids from her body, so the swelling is starting to go down, and a doctor from Shriner's (pretty much next door) is coming to see her tomorrow; if all continues to go well, she will be transferred there, so they can deal with the effects on the skin and limbs. There have been so many doctors and so much information, and I'm likely leaving some things out, but that's the gist of where we are right now.
Thanks, everyone, for your prayers, support, phone calls, visits--we are indeed blessed w/family and friends. Keep Sammy in your prayers, as we have a long road ahead of us. She's such a strong little girl and has been through so much in her short life.
Jessica & Rob
Here is the second entry, from May 18, 2005:
Another day has passed, and Sam is still pretty stable. Two docs from Shriner's made it over last night; they couldn't say a whole lot at this point, as they'll have to look her over in more detail in the OR, as soon as she can be moved. At this point, her upper extremities look okay; her feet don't look so great. A guesstimate as far as her transfer would be maybe late next week. They are talking about wanting to do a few procedures sometime this week, but they're still debating, and all they've done today so far is put in a new feeding tube. They are also cleaning & treating her skin a couple times a day. She's coming to a bit, and makes a lot of faces when they're doing anything to her; her eyes open a little here and there, and she did make a little cry yesterday, but she's still heavily sedated, and they assure me the pain is under control. She moves her head, as well as her arms, so we definitely know she's in there! One of the nurses put her hair in pig tails, and w/a lot of the swelling down, she's resembling our baby girl again. Her white cell count was up yesterday, but they're not sure why yet; I haven't heard anything new about that today, but am praying a new infection won't set in--that's the last thing we need right now. We're also waiting for her kidneys to start doing their thing again. So, it's a lot of waiting, and a lot more hoping and praying. Thanks, everyone, for your prayers and thoughts--it's nice to see so many names, both of folks I know and folks I don't. Sam can use all the prayers she can get!
Jessica
First let me say what a great site the hospital has. I joined and that picture of the two of them is precious. I'm still continually thinking of her and hope things keep going her way.
http://img.photobucket.com/albums/v4...indPrayers.jpg
She will continue to be in our prayers. Thanks for posting the updates, Jo.
Still sending prayers and good thoughts for Sammy's recovery.
What a beatiful little girl she is!
Thanks, Phred, for posting the photo.
Thanks for that link Johanna. I've signed up.
Hugs and continued prayers for Sammy.
Awww. There are some more pics of Samantha up there now. She's so sweet! Still praying for her!!
Thanks for the updates. I'm still continuing to pray for her.:)
Having been away for a day I only could read the updates now. I think this is already very good news- regarded how dangerous this disease is and we will hope for more- in time of course:)
Any update today?? Still have Samantha and her family in our prayers.
Logan
How is Sammy today, Johanna? Any updates?
Still praying for Sammy.
I've been checking the Carepages... no updates for yesterday or today!:( How is our Sammy doing????
Kim
From FRIDAY MAY 20, 2005
Sam's vitals continue to be strong, and she's much more alert now--her eyes open and she looks around, and tries to move. She also responds to our voices. She is still on pretty heavy sedation and pain relievers, so she should be comfortable, but even on all the , she still manages to wake up here and there, though not completely. It's both a comfort and a concern to us; we love to see her open her eyes, and it's a good sign neurologically that she's doing all that, but at the same time, we to think she might be feeling any pain at all, even occasionally. She may be transferred to Shriner's today; the doctors at both places have been discussing it, weighing all the pros and cons, and wading through the various politics involved. Sam's case is fairly complicated, so it's not an easy decision, but everyone feels Shriner's has the expertise needed to deal with the most pressing concern right now, which is her skin/limbs. She's still on dialysis, but can continue that there, as the kidney team can consult at Shriner's as well. Shriner's is state-of-the-art, and can offer Sam her best chance at rehabilitation. I just spoke to some of her drs. minutes ago, and they think she should be transferred asap, so we'll see. The longer we wait on dealing w/the skin issue, the greater the chance of another infection, so time is of the essence. I will post again when she's moved; please continue to pray for her, as she still has a long journey ahead. Thanks so much, everyone, for all your kind thoughts and prayers. I know that Sam can feel how much she is loved.
Jessica
Hugs for Sammy. I hope they make a decision soon.
That sounds complicated but you seem convinced that the moving is what is best for her- so we wish you all good luck for that!
Thanks for the update! I'm still praying for Sammy everyday. Hopefully they'll be able to make the best decision regarding her transfer to the other hospital.
Thanks for the update, and give her parents hugs from all of us, and tell them the Prayer Pawtrol is still at work for Samantha!
I just have to say, when Mayor Karen put her prayer pawtrol (and specially her Bell Ringers) on the job, my daughter-in-laws' condition changed for the very much better. Don't mean to put anything on you, my friend Karen ... but sometimes one just has to believe. And I do.
I just went to read the update and they posted that Sammy is going to have her legs amputated from the knee's down tomorrow morning.:( :( :(
May God be with this family and precious little Sammy. What a horrible thing for them all to have to endure.:(
Prayers are still coming for you all Johanna and my thoughts will be on nothing else tomorrow. God Bless.
OMG! :(:( Major sadness. :(:( I am so sorry to hear this. What a dreadful disease to take a little girls' legs. God be with you all, and help you all to be strong. Remember that even with this tragedy, Samantha is still alive and with you, and THAT is what is the most important.Quote:
Originally posted by catcrazylady
I just went to read the update and they posted that Sammy is going to have her legs amputated from the knee's down tomorrow morning.:( :( :(
Friday evening,
It is with an incredibly heavy heart I post the following:
We are now at Shriner's, and Sam is set up in her new ICU room. She has been thoroughly examined by their experts. We are saddened to report that in order to save Sam and keep infection from setting in, they have to remove all dead tissue; unfortunately, this means they have to amputate both legs from the knee down, as the tissue/muscle, etc. is dead. Even though we were warned of this possibility/eventual probability, we are numb with grief, and this is why we haven't accepted any visitors today. I think, while at Children's, we stayed focused solely on Sam's survival, and now we are faced with the harsher realities, and words can't adequately describe the heartache we are feeling tonight. We just ask for a little time to be with each other, and support each other through this. Surgery is set for 9:15 tomorrow morning. Please continue to hold Sam close to your heart. I will update again after surgery.
Jessica
Oh Jessica,
I am so sorry. :( I am holding you close(Sam, and your family) in my thoughts and prayers. ((((Hugs))))
I can't begin to fathom what you and your family are going through right now.
Prayers for you and Sammy and your entire family.
I just read the latest update. Like someone else said, I can't even imagine what your family is feeling right now.
(((((((((Hugs))))))))) and continued prayers.:(
I cannot imagine why God has chosen to test your family in such a way. It is extremely difficult to even be able to write you just a few words of encouragement right now.
My heart goes out to each and every one of you.
The only thing I can think of is that Samantha is going to make you all so proud....................and she has many gifts and lessons she will give to your family.
In the meantime, I will continue to pray - pray for everyone in Samantha's family - to bond together in love for this child.
Samantha and you and your family are still in my prayers.
Oh Johanna. :( I'm sitting here with tears in my eyes again. My heart is breaking for little Sammy...for her parents. :(
I don't know what I can say to bring any comfort to your family. Just know that Sammy is still in my heart and constant prayers, as is Jessica and your entire family. Please give Jessica a big hug for me. I can't imagine how very difficult this has to be for both her and Rob...for all of you. :( Samantha is such a strong little girl, and I know God will help her through this. I just know He will.
{{{hugs}}}
I will say some special prayers for Samantha tonight.
I don't know what to say :(
I don't know why this is happening. I don't know what God intends.
Please be stong little Samantha, Jessica, Rob and Family. My heart goes out to all of you and I will still be saying my prayers for you all.
:( :( :(
I am so very very saddened to hear this news, that that joyful, precious little girl must lose her legs :( :(. My prayers will be with Samantha and the whole family, tonight and tomorrow especially.
I know these words probably sound hollow, but I do know they've made amazing advancements as far as prosthetic limbs go, though I do not know what all is involved in that. I do remember seeing people who seemed to walk just as well as you or I would. I know these types of thoughts are pitiful consolation at best right now. I just cannot imagine what you all are going through at this moment. :( I just can't bear to give up the hope that she will be able to still walk at some point in the future. I do think it's possible with the medical advances that have been made.
:( :( :( Mega prayers for Samantha and her family. I'm saddened beyond words. Bless those wonderful doctors at Shriners. It must break their hearts too, even though it's a life saving operation. I just hope and pray that poor, sweet child gets well.
Oh gosh, my heart is breaking for you, your family and beloved Samantha.
Prayers on the way that you take comfort in each other and stay strong.
I'm so sorry to hear the latest news.:( Lots more prayers and positive thoughts are being sent to Sammy and her family. {{{HUGS}}}
How very sad.:( {{{{{Hugs}}}}} to you all!
Jessica and family,
I'm so sorry to read Samantha's legs need to be amputated. :( I can't imagine all the thoughts and emotions being felt now.
I'll continue to pray for you all.
Hugs and love,
Kelly
I don't even know the right words to say. Sammy is in our thoughts and prayers, espically as she prepares to undergo surgery this morning.
There was a new update this morning to the Carepages, and Sammy is headed back to Children's after a bad night:
May 21, 2005 at 12:08 PM EDT
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Plans have changed, and we are on our way back to Children's. Sam ran a high fever all thru the night--over 104--and was having chills/seizures, heart rate up over 200, etc. They wanted to do surgery anyway, but I refused to consent, and asked them to transfer her back to Children's. They are at least able to make her comfortable over there, and I have much more faith in their acute care abilities there. We are distraught w/the direction things are taking here, and after much discussion, this is what we've decided. We don't know what will happen from here. Sam seems to be suffering right now, and we have grave concerns about her quality of life, and can't seem to reach any kind of agreement w/the medical personnel here, and there have already been heated arguments. We just don't have the trust and faith that we had at Children's. I will update again later; we have lots to discuss w/the doctors at Children's, so we ask, for the time being, that no one visit until we've had time to take care of things there. Thank you for your continued prayers.
Jessica
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Continued heartfelt prayers.
We are there. Thinking of you. :)
This is so sad :(
Keeping you all in my thoughts.