Friday, October 2, 2009

What a Day...

Yesterday was a busy day with tests and doctors and nurses in and out all day. I had planned to update the blog last night before going to bed, but once Abbey fell asleep I had a hard time keeping my eyes open. It is 9:45 am on Friday and as I sit here and type Abbey is sleeping peacefully in her bed. She is exhausted from all that she's been through this week and a 'normal schedule' is out the window when we're in the hospital. She has been taking late naps almost everyday so then at night we are awake really late.

I had different plans for our day today as it's our one year anniversary of Abbey being diagnosed with leukemia, but as I look at her perfect little face and feel her sweet breath on my check each time I kiss her forehead, I am just so thankful that Abbey is with us today, so wherever we are is o.k. We are blessed that she's made it as far as she has and know that this year could have looked a lot differently than it has. She is a fighter and has overcome many things over the past year. So today on this day of celebration we sit here in a hospital room, but we praise God to be able to see her smile, hear her voice and just be with our girl.

Yesterday started off rough. She woke up with the highest fever that she's had yet and didn't even want to pick her head up off the pillow. She was also complaining of eye pain again (which was what she kept complaining about right before they found the clot in her brain). The hardest days for me are without a doubt the ones where she is so sick that she doesn't even want to open her eyes. I called Jim and just cried. I thought the whole day would be like that and just didn't know if I could handle being here another day, in this tiny hospital room, just watching her be so miserable. Her numbers came back early in the morning and again they were not on their way up. They were actually down a little from the day before. At rounds the medical team gave us the plan for the day. They had ordered a ct scan for her head to check on the clot. They also wanted a chest x-ray done to make sure there was no infection or anything going on there that they were missing. They were also going to look at her blood closely under a microscope to make sure there were no leukemia cells or any suspicious cells that were starting to show up.

Soon after rounds, Abbey woke up and wanted something to eat. I was thrilled that she sat up and was actually wanting to eat. The next hour got much better as she seemed to perk up and prove me wrong about our day ahead. Jim got here in early afternoon and when he walked in the door, Abbey's eyes lit up and she couldn't stop smiling. He came with a huge bag full of stuff from home. It was so wonderful having him here and just what us girls needed.

So back to the tests..... Since a ct scan and x-ray are fairly fast, she didn't need to be sedated for either, which was a huge relief. Both tests came back normal. The scan of her brain found nothing abnormal so of course a huge answer to prayer. They wanted to be sure that the clot did not come back and there was no sign of it on this test. An MRI is more sensitive and is able to look even closer at the area where the clot was including seeing the blood flow there, so we still need to continue her shots until her scheduled MRI next Friday, but the results from the ct scan were reassuring that her eye pain was not being caused by something we didn't know about in her brain.

The blood smear also showed no leukemia cells or any suspicious cells. That was the best news we had gotten all day. That's always a concern when fever comes on and her numbers drop so low and to be honest, our biggest nightmare as that would be a relapse.

The only other test we are waiting on at this point is the results from the swine flu test. They have done three wrap panels on her (it's a test where they have to put a small tube up her nose and squirt water up there, then suction it out) and it is unpleasant for her to say the least. They have ruled out many other viruses from the other two, but this third one is to just test for swine flu. We should know any time what the results are. We would be surprised if that's what she has just because her symptoms don't seem to be lining up with having the flu, but who knows. Just praying to be able to rule that one out!

So the waiting game continues... We should get her numbers back soon and get the results from her swine flu test. Could you please pray for these things today... No fever, higher numbers, her to begin feeling better overall and negative swine flu results. Abbey and I are missing our boys so very much and the boys are missing us too! It's so hard to be living under two roofs and kids under 12 aren't allowed to visit the hospital as the cold/flu ban in on so Jacob and Micah can't come up to visit. We haven't seen them since Monday and it's been hard. Thanks so much! I will update later and let you know any new results that we have...

I am now going to work on putting up the slideshow that I put together of this past year. Wishing Jim was here to do it with me... Check back later to see it..


Jessica O'Keefe said...

I am lifting you ALL up in prayer today praying for a special measure of God's abundant grace for you, Shelley, and full healing for your beautifu daughter!

Melissa said...

I feel your insanity. All of Josh's admissions are isolation now, as in he is not allowed to leave the room at all. Sick or well, or somewhere in between, staying in a hospital room with your child 24 hours a day, it unravels your sanity.

Hope you guys can get out of there soon. I always try to remind myself of all the good reasons to be in-patient. Access to IV pain and anti-nausea meds, no having to wait on hold at 2 am at home to ask a question about what to do next, free unending supply of popsicles, the craft cart, one on one time with your child (even if it is making you insane), and better yet an entire staff of people whose job it is to share your mental load and take over some of the worrying about what is wrong. Make sure to take advantage of Child Life, or whoever stops by and offers you a break, you have to self care! And I say that as a momma who turns them down a lot not wanting to upset Josh, but you need to do it.

And most importantly, for as much as you let yourself worry that this could be something bad, let yourself also think that it is probably just a blip fluke on the radar. If you stay to long in the dread and anticipation, it just makes that hospital stay that much more heavy on you. Being in-patient is tough, it is a road few will ever truly understand, try and make every effort to take a mental break as well as a physical one.

Thinking of you.

Heather said...

Sending you peace and strength on this day as you relive the unimaginable but simultaneously rejoice in the moment of here and now.So sorry Abbey has had such a difficult time.It seems to go in spurts like this.Another reason we cannot seem to take a breath and relax for we have no idea what awaits us around the corner.But for this day,we thank God for His grace that has covered Abbey and continues to protect her as she journeys forward.Prayers of healing coming from California.

Anonymous said...

Shelley, thanks for the update. I'm praying that Abbey doesn't have swine flu and also that her numbers will be coming back up. I hope she continues to feel better with each passing day. Hang in there Mom, you'll both be home soon. God Bless!

Cindy Bailey said...

Shelley...I hit send on the last post before typing in my name. It looks like I'm anonymous again.:)

Beth said...

Oh Shelley!! What a mixed bag of blessings on this special day! Rejoicing that the test/scans have all come back with great news...what a blessing!! Praying for your requests and that you feel Gods arms around you holding you tight!

If you guys need anything run down to the hospital please do not hesitate to ask! We are about 10 minutes away and would be happy to bring dinner, toys etc!!