(still snoozing at 2 in the afternoon)
Yesterday wasn't great for Lolly; the evening was even worse, but she slept well all night, and is STILL SLEEPING (it's 1:45 p.m.)!!! Our nurse today has been wonderful. Lolly was scheduled for a KUB x-ray at 9 a.m. She was still sleeping, and I begged them to hold off on the x-ray until she woke up. I'm not sure if I should be worried that she's still asleep, but I am very grateful that she is. I'm hoping all this rest will help her to cope a little better today.
Things have been a little discouraging here. It seems as though every step forward is accompanied by two steps backward. But today, I did get some good news. Her pancreatitis has been getting worse, as measured by the Lipase levels in her labs. Two days ago, her Lipase level was 2217 (normal range is 10-150). Today, it's down to 873.
Other good things- she doesn't need a blood transfusion or dialysis today- although I suspect she'll need both tomorrow. Because this blog is as much for my record keeping as it is to inform those who want to know, here are some other lab results from today:
Platelet count:
Normal Range: 150 to 400
September 28- 126
September 30- 78
(she's low, but her count has been as low as 14, so it's not terrible)
Hematocrit (Red Blood Cell Count):
Normal Range: 34 to 40
September 28- 21.7
September 30- 27.5 (thanks to Tuesday's transfusion)
I can't believe it's the last day of September. Fall (my favorite season) is passing me by! Just today, I've heard two different people talk about Thanksgiving. I try to not let my mind wander to what life should be like right now- putting out fall decorations, planning for birthdays (Luke's is in two weeks), working in my yard, etc.
It's really strange to think about the world going on- people living normal lives- while my life, as I once knew it, is pretty much at a standstill. I am both overwhelmed with the thought and dying with anticipation for the day I get to be home, with a husband and all five kids- cooking meals, doing dishes, doing load after load of laundry, helping with homework, picking up messes, reading stories, taking walks, tucking kids into beds, and stressing about all the little things of life. It seems like such a long way off, and if I think about how long it might be until we're all home, I get really sad.
It's really easy to get discouraged here. Healing is so gradual and so, so slow. One step forward and two steps back seems to be the norm. Worry and lack of sleep get the best of me, at times, and I'm afraid that I am terrible company most of the time. I'm surprised that my dear mother hasn't given up on me. This is Lolly's 19th day in the hospital. Ben's sister, Heather, was at the hospital last night, when Lolly was having a terrible night. Heather lives in Salt Lake, and I'm grateful that she keeps coming back, despite the fact that I'm not always the most cheerful person here. She's done a lot to lighten my load by helping to care for both Sammi and Lolly. This morning, I got a really encouraging email from her, with a link to an amazing video by one of my favorite speakers, Elder Jeffrey R. Holland, of the Quorum of the Twelve Apostles of our church, The Church of Jesus Christ of Latter-day Saints. No matter what trials you are currently dealing with in your life, it will bring you encouragement too. It is well worth the 4-and-a-half-minutes you'll spend watching it.
I am really looking forward to this this weekend. It should give us a good boost.
Sorry things aren't going so great. You always seem so positive so it makes me sad to hear the discouragement in your words but at the same time it's nice to see you're human! I loved the comment somebody left awhile back about letting them know when you were being translated- so true! Your strong and you'll get through it but I definitely think you have some room to get a little down about it. It would have to be hard for things to be so out of your control. And since I know you'd never say, I'll say it for ya- it's not fair! I hope her day is better tomorrow and gives you both a boost.
ReplyDeleteI was at your house for just a second this morning and I'd have to agree, it's wierd that you're not there with all your buzz of activity. I hope things turn around soon and you're home sooner than you think. There's still lots of time for fall decorations- besides didn't you skip it last year and go straight for Christmas in like August? ha ha
You already knew I was long winded, right? Looking forward to tomorrow's post cause on her every other day schedule, it's bound to be a good one!
It's good that you can vent your frustrations. I would worry about you more if you didn't. I admire your courage and strength. Hang in there. It's such a blessing to have your support team. I hope you count on me as one of them.
ReplyDeleteok babe....im comin' up with loads of chocolate and sappy movies....just kidding! but, i bet some IKEA swedish meatballs will make you smile!!!!
ReplyDeletehope the BIG.LONG sleep makes princess happy as a clam (well, at least for tonight!)
I am glad that she is resting today. I am sorry I did not get to see her, but it was great to see you. I hope she liked her pumpkin and new blanket. Hang in there. Jim had a good check up. Again, if there is anything I can do at home please let me know. Love to you.
ReplyDeleteSorry it was such a rough couple of days. I hope we didn't contribute to her stress on Wednesday. You are so strong, Robbie, really. You will get through this! Looks like we might be headed back to PCMC tomorrow - the button just keeps getting worse. If we make it up there, I'll see if they have any of that amazing beyond amazing chocolate pie in the cafeteria and bring you a slice (or two!).
ReplyDeleteMy eyes are teary, for you. Can I help with Sammi? I REALLY, REALLY mean it.
ReplyDeleteYou know, when Shannon talks about her hospital stay with pneumonia, she has pointed out that she just slept through it. It was everyone else who had the hard part. Being the patient isn't easy by any means, but being the caregiver has got to be the hardest position. I pray for you just as much as Lolly. You are such an example of selflessness. Lolly is a very lucky girl to have you to get her through this.
ReplyDeleteSince Lolly is getting such excellent care at Primary Children's, I'm thinking of sending in a major windfall. Instead of donating "Pennies by th Inch" I'm thinking about going "Pennies by the Pound." Now that should get their attention!
ReplyDeleteLove you guys.....Hang in there Miss Lolly!
Hi Robbie - this is Jaimee Kennedy...don't know if you remember me or not from our days in the student ward at BYU. We were visiting teaching companions for a little bit. After you guys moved away we got to be good friends with Greg and Gwen and have kept in touch with them a little bit through their blog. So I have heard updates on your sweet family every so often through them...I remember hearing about Trey from the beginning and I'm so glad to hear that he's doing so well right now (I really enjoyed ths post telling all about his heart history). I am in awe of everything that you and Ben have gone through - I think you are doing amazing! You and Lolly are in my prayers...it has to be so hard for such a little girl to be stuck in the hospital for so long. I'm glad she got to visit with her brothers though. One last thing - Sammi is absolutely adorable!
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