family pic

family pic

Sunday, January 4, 2009

the low down on the curious case of saylor jae

So i know many of you are anxiously waiting, wondering. i dont feel much like posting to be honest. i feel tired and discouraged but it would be unfair to not share with those that hold us up.

so the weekend of thanksgiving break saylor came down with what we thought was stomach flu. at the time it seemed just a huge blessing that no one else in our family joined her in the adventure. it came with all its miserable glory and went in about 24 hours.

fast forward to the weekend before xmas about 3 weeks later. she gets it again. has the same symptoms the same pain. it comes in like a lion. this time lasts a little longer. nate was out of town buffalo hunting and i was pretty distraught trying to figure out how she could possibly aquire such a bug twice in such a short time. after about 36 hours it left her and she slowly emerged into her real self a few days later. yet again no one in our family joined her in sickness. weird for stomach flu right?

fast forward again to new years eve when she starts saying she is cold and that her stomach hurts, starts rocking and crying in pain and asks for a bowl to throw up in. WHAT? i think. so we decide its time to seek medical attention that something is wrong beyond that of a stomach bug. but we also feel the dread of what this means, the unpractical way of approaching docs who tend to not really listen and chock things up to the easiest or first thing that comes to mind. the process for which resolving problems on a holiday evening dooms us too. the dreaded ER. we called our neighbor a uvrmc trauma surgeon who initially felt that she was constipated despite my insistence that she had pooped several times that day and that certainly could not be the culprit, she has the opposite problem if anything. he then said he would come over and look at her and based on the location of pain he advised us to go to the ER with a suspicion of bowell obstruction. thankfully he called ahead and made this process a much more pleasant one that we normally experience. after some xrays an obstruction was ruled out and we were sent home with "a stomach virus" and some pain meds in case her mysterious pains came back, cause you see at this point she is happy and appears healthy. of course. its just how it works right.

thursday morning, terrible night. pains and vommiting start back up. our neighbor insists she is contsipated and we reluctantly give her diareah meds so we can eliminate this as a culprit. we struggle to get through a rough day of pain. realizing quickly that she is not constipated when the pain persists through the diareah that we have now intentionally given her. nate and i rock back and forth in bed with her all day frustrated and concerned.

friday morning comes and we have had it. its a holiday weekend and no SB docs are accessible. we decide to go ahead and call the pediatrician who orders labs and a urine analysis. of course as soon as we go out and about to get labs she gets mysteriously better. she has a good afternoon but the labs come back all over the place with several things high and low. urine analyis is suspicious but not necessarily infection, as it always is with her weird bowell urine coming straight out of her cath. friday night she starts up again.

after a long night and morning we head into the doc to have her examined and decide what to do. upon arrival she starts to perk up and get better again. he still orders another set of labs and an ultrasound. the ultrasound rules out kidney stones or gall stones which could make sense of the coming and going. and it discovers only one abnormal thing a small pocket of free fluid in her abdomen which the radiologists deams post surgical and nothing to worry about. me i am not so sure about that. so here we are after all this exhausted and even more perplexed. her pediatrician starts her antibiotics to be safe and cover the potential UTI and says we need to call her pediatric surgeon at pcmc and get into him as soon as possible. he essentially tells us to hold tight through the remainder of the weekend. the evening rolls around and she starts once again. she suddenly says to me "i want to be blessed." not to say we were avoiding this she had already had a blessing during the second round of all this. so nate and the bishop gave her a blessing. it was strong and powerful. she went to bed pretty peacefully but woke again at 3am with the same symptoms.

she was sick until around 11-12 when she started to pull out of it again and now its sunday night and she has had many hours of wellness. we sit on pins and needles waiting for her to relapse or be done with this strange illness. we have talked about many possiblities and some are bad, some not so bad. yet we still do not know entirely what the culprit of all this has been. we remain discouraged and perplexed but hope that this is resolved in some strange way. we have now met her out of pocket for the 09 year. we arent sure how to handle all the compounding medical debt. we knew we would just didnt think it would happen in the first 3 days of the year.

so thats where things are .... for now. with saylor.


Engrained Emotions said...

I think of Saylor and her willingness to teach all those around her, her patience, her eyes, those eyes that pierce your soul, those eyes that love and beg for help, those eyes that want answers before she will let the nurses treat her.

I think of you, her momma, the love, the concern, the panic, the frustration, the helplessness and again the love. All of which is completely exhausting!

I will continue to pray for you. I will keep you in my thoughts and will wish for peace to come your way. A moment of peace.

Love you

Kathy said...

Awww! What a crummy time you are all going through! I feel for you guys. It must be awful and must have you feeling so helpless (and I know that sometimes the medical providers ARE help-less and make you feel even worse!). Hang in there. I'm sending positive vibes your way!

Ashleigh said...

I am sorry to hear about little Saylor. That is awful! We will pray for her!

Amber Schmidt said...

I am praying for answers and solutions for this issue. I know how awful it is to be standing in a room full of medical professionals SCREAMING at the top of your lungs and having everyone write you off as crazy. I am so very thankful every time I visit a doctor that we have had such a compassionate surgeon who has NEVER once told me I am crazy and always listens with eager ears. I am praying that God will place someone in your life who has a heart of compassion and ears to listen.

Huge hugs!