Saturday, May 2, 2009

Lots of questions, no answers

Bill and I sat in the living room this morning debating whether Annie's listlessness and increased seizure activity warranted a trip to the ER. After lots of head scratching, hand wringing and consulting with the neuro-doc-on-call, we decided that Bill would take her down, and I would attend to the kids here at home, work, jazz band events, etc.

Bill and Annie were stopped at the entrance of the ER by a security guard armed with swine flu identification tags--if you hadn't sneezed, coughed, sniffled, or been within spitting distance of anyone who had, you got a blue sticker to wear that had in large type: NO FLU SYMPTOMS, or something to that effect.

So after getting settled in a room (2 hours) and after the nurses poked and prodded, and checked her electrolytes, (fine), blood sugar, (fine), and various vital signs, (2 more hours) the docs concluded that her droopiness and increased seizures might be caused by the fludrocortisone, and that we should discontinue it. They also increased some seizure medicine, and doubled her dose of hydrocortisone, and told Bill to call endocrine & neurology on Monday to follow up.

Then Bill took Annie, put her tired little body back in her wheelchair and wheeled her back out to the parking lot, lifted her back into her carseat and drove home. It was a hard day for Dad and Annie...and frustrating that there are no clear cut answers, only questions.

While Bill was on his way home, I watched last Sunday's sermon on line...I had missed it, and Bill had told me that it was helpful to him. I would recommend it to anyone who is going through a tough time--it gave me renewed perspective on our situation of chronic illness. The bottom line for me tonight is that I need to trust Jesus and worship God, even when there are no answers.

Jean

http://www.marshillchurch.org/media/trial/suffering-to-worship.

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18

5 comments:

Anonymous said...

I love you guys so much and I want Annie to be healed. I pray for that. I also pray to praise God for parents/family such as you and that God is so consistently glorified through this situation.

I know it's hard and I also know I have no idea how hard it is. Here are some verses that I take comfort in in my own trials:

Psalm 37: 3-7a

Psalm 31:7 (NLT) I will be glad and rejoice in your unfailing love, for You have seen my troubles, and You care about the anguish of my soul.

Someday we will see the whole picture. 'Til then, thank you for sharing each brush stroke with us.

Continuing love and prayers,
Terri W

Gretchen said...

Terri said it all for me. I'm so sorry things are so hard this side of heaven. Blessings to you all as you walk thru each day, hands open for whatever He gives or takes away. May He be the lifter of your head. xxxooogjh

Dusty said...

I hope Annie is doing better today.

Did the docs give you any clue as to why the fludrocortisone might be the cause of the increased seizures? Did they recommend that you increase Annie's salt intake or change anything else while she was not on the fludro?

:) Dusty

Jean said...

Thanks, Terri & Gretchen--it is always a comfort to know you're here with us in love & prayers. :)

Dusty--it's not clear whether Annie needs the fludro or not--her labs on Saturday were fine, and she hasn't taken fludro constantly through the last 2 years--she was on it early on, and ended up in the hospital with high BP, and then they discontinued it after alot of analysis...it was kind of a "trial" to see if it would help her, but as soon as we put her on it, she started getting really sleepy and started having more seizures. The reality is, it may be totally coincidental--she might have a bug that we just haven't identified. But she doesn't have any temp, and again, without the fludro, her labs were fine. I'm not sure they did a renin level, though. I need to call endo & follow up with them now.

Anonymous said...

"Thru many dangers toils and snares I have already come....."

May your toils be less and finally some clear cut answers. I know that God has a plan and it is bigger than all of us but it is still hard not to get stuck while we are in the thick of things. Sending you love!

Tanya W.