Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Saturday, July 2, 2011

make plans, cancel plans











the bow was a nice touch, lulu appreciated it....






woke up from this nap to my mom's beautiful face...she is still my comfort just like i'm lu's. i would have loved for my mom to hop in the crib with us!






it was going to be a really fun weekend. dirt biking this morning, birthday party for the kids, staying at a friends cabin tonight...throwing a surprise party for my sis-in-law tomorrow (SURPRISE SARA!).... but it's not unusual for us to avoid a crowd to keep London well or to cancel the fun stuff to get LuLu better. so instead we headed to PCMC this morning for a (short) stay...we should be able to leave Monday, knock on wood. we will make up for the lost fun next weekend. London's temperature got up to 103.5 which is an automatic hospital stay for her.


i'm not saying that watching the little mermaid on a continuous loop isn't fun....just not AS fun as plan A. it always makes me take pause to reflect on how grateful we are for modern medicine, the care we receive at Primary's, for our donor Ashley and how fortunate we are to have such a miracle child. she is an impeccable 2 year old. i hope i'm as proud of her as a teenager as i have been in her short life thus far.

her labs look good, she's receiving fluids and IV antibiotics, urine/stool samples look okay, so not sure what the cause of the fever- probably just a typical bug that kicks her cute, little immunosuppressed butt.


get well soon my little lu.

Wednesday, April 13, 2011

To GO or not to Go, that was the question






We had labs and clinic on March 29th and everything looked great. SO great that we were able to discontinue 2 of LuLu's meds. YAY. She is down to 1. I can't believe it-- a year ago we were giving her dozens. She takes Prograf (anti-rejection drug) twice a day at 9 and 9 and will forever. With Prograf comes many side effects and I've just recently had the courage to dive in and study them all out in greater detail and understanding.

I know, it took me a year but I couldn't handle it emotionally until now. There is no alternative to taking it for it's the only way to prevent her from rejecting her liver and dying. So we will deal with whatever comes-as it comes. The greatest worries for me are her (much) increased risk for Melanoma and Lymphatic Cancers. She will probably never conceive a child for the side effects on a fetus are devastating. I learned this at a peak in my own grieving about not getting pregnant again myself. We have chosen not to risk this disease on another child. I am so glad I loved both pregnancies and both deliveries. Labor and delivery is the best thing in the world.

I wish I had known LuLu would be my last, so I could say goodbye to that then, know it was over, the last time I'd take a brand new baby home from the hospital. It's like not being able to say goodbye to someone you love and will never see again. I stopped feeling sad for myself for I've experienced this miracle twice and just felt sorry for my little baby.

I know though that adoption can and will be a wonderful experience for her if she chooses to do so. It will be it's own unique, special journey and she will be a spectacular little mother. (in like 30 years) Babies will be sent to her from God through a different medium but the ones that are suppose to be hers to love. Adoption has been on our minds a lot lately. Even before we got married James and I talked about it being something we'd love to do and we hope we can. Especially with our recent trips to Haiti the need for loving homes for these amazing children is so great. We hope to be so lucky.

After LuLu's fabulous clinic appointment on that Tuesday the 29th she became really ill just hours later. Tuesday, Wednesday, Thursday...starting to get really worried for her and my need to cancel or pursue my trip to Haiti on the following Sunday. We went for labs Friday to check the little lady out and she got really ill in the main lobby of the hospital. We were sent to the ER for testing and to start receiving fluids and meds. I began to say goodbye to Haiti... London was admitted to the hospital and made a really quick turn around. My hopes to go began to flicker again and allowed myself til Saturday to see how she was doing before deciding one way or the other. Tests came back positive for Rotovirus (yes, something she was immunized for) but having already been sick for so many days figured she was at the tail end of it. Her improvement overnight was basically a full recovery and as soon as we were released that afternoon I began to pack and looked forward to an experience of a lifetime.

Thankfully London did so well while we were gone and I had no doubts about ALL the capable hands her and Jonah were left in. And Haiti was the best thing that could have happened to me.

Thursday, May 6, 2010

Later Gator





AND, WERE HOME. (sweet home) Lu was so happy to drive the car down the halls into the elevator and out the door. She'd been waiting for days to bust out of her room for this joy ride. Welcome home LuLu, welcome back Jonah. Thank you Grandma and Grandpa for taking him the last few days.
xoxo
lizzie
alpha-1, liver mum
ps Jones get better, Mum and Lu don't want to go back to the hospital anytime soon.



 

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