off some meds...

Wow...right now Maisy has not been on any pain meds or muscle relaxers and she is much less agitated. She is still pulling lots of tubes and not happy about being in bed, but she is looking much more calm. pShe is sitting up for a minute or so at a time--(with me holding her up) and she gets tired easily but she doesn't seem to be in any pain. Still has a fever (101.5) but no one seems worried about it. We are making progress!

The incredible shrinking Maisy

Maisy has 2 liters of excess fluid built up in her body--I can't even comprehend that much fluid accumulating in a little 22 lb body. Her eyes were swollen shut from the puffiness. The diuretics have started working and she is outputting quite a bit but it is going to take quite awhile to drain all that fluid. Tyler and Mark came to visit today. Maisy loved to see Tyler and actually smiled for him. It was so good to see her spunk come back a little bit. Her former foster parents stopped by as well--she always loves to see them.
She is itching so much from the meds...even the dilaudid is making her itch. We are pumping the benedryl...
The central line in the jugular vein is 12 cm long and stitched in to assure that she can't pull it out again...but knowing her, I won't believe it until I see it!
Thanks for your prayers...

Maisy update

Maisy has been a bit rough again. Her oxygen levels are not staying up and she is requiring oxygen support through her vent. Her lungs sounds are coarse and wet and she can't tolerate being off the vent for even a few seconds with out her levels dropping. The doctor explained that all of this is being caused by the excess fluid that is in her body. We are starting on Lasix to relieve that.
They just switched her pain med to dilaudid instead of fentenyl or morphine...which made her itch and weren't working that well.
We haven't seen the wonderful smile of hers since Tuesday morning---am looking forward to see that again sometime soon. We aren't leaving the ICU today...maybe over the weekend. I don't mind because she is getting great care down here and I can actually step out of the room and know she has one on one care. Thanks for listening...

Precious Hope...

I am so amazed at this young lady....15 years old today. Really, there is only one word that comes to mind when I think of Hope....and it is "joyful.." As a middle child, Hope is easy going, fun, helpful and a peacemaker in the family. She has matured so much this past year and was really ready to start high school this fall. She is full of surprises as she tries and loves all sorts of new experiences...as a rugby player, photographer, vocalist and now actor, she is not afraid to explore all sorts of interests. She has recently decided that she loves working with children and is talking about learning more about the fields of physical or occupational therapy. She loves being a big sister to Maisy...she will make a great mom one day.

Hope is comfortable with sharing her story in life...she shares it with others as a means of encouragement and hope. Hope's birthmom had mental health issues was homeless when she delivered Hope. She lived with her mom for only a month until child protection placed her in foster care. Hope has ADHD and is managing it well. It creates challenges for her that she faces head on. Hope has been a Martindale since she was 8 months old. I can tell you that we did not realize what an incredible blessing she would be..we knew she was delightful back then--but watching this little lady become such a compassionate, and joyful follower of Christ has truly been a blessing. She gives to us so much more than we given back to her...we are humbled by the gift she is to us...

Hope's compassion and acceptance of others is inspiring. It reminds me to have a little more patience, to walk in some one else's shoes for awhile, and to find joy in the little things..always.
Happy Birthday my dear, sweet Hope...I could not love you more than I do. And to imagine that God loves you even more...wow...that is amazing..

She's with me...

It has ben 17 years since our lives changed for ever. I am sitting not far from where McKenna laid in the NICU on the day she was born. Today is her 17th birthday. She is a miracle that has transformed our lives--she is faith in it's raw form...uncluttered by intellectualization, distraction, or greed. She keeps my view of the world in perspective..and I would not trade her or her disability for anything. Some people touch your lives and others transform it...God has used McKenna's life to transform us in so many ways.
I recently found the song "She's with me" by Collin Raye. It is a song about a Grandpa and his relationship with his disabled granddaughter. You can listen to it or watch video on utube. If you listen to it, I apologize in advance for making you cry..it is beautiful.)

She’s with me.. I proudly tell the maitre de as we arrive He seems surprised In a
clumsy moment as he looks for room, for her blessed chair A table stares, and
their eyes show only pity as they try to sympathize. Oh, how difficult that must
be, look away Day after day, they’ll never see, the joy you bring Only happy at
the times I know that she’s with me... I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry. Time to go bye bye,
she can’t say why Maybe tired, maybe hurting, god I wish that I could tell Do I
ever make her happy for awhile? To see her smile, makes my week, Though she can’t speak, She let’s me know she feels my love when she’s with me. I know just what heaven looks like when I see that perfect face. For no other mortal heart could
be so fair. I myself so weak and weary, so imperfect as a man. How could I be the one you chose to care for our girl? Never done a single deed to earn the right to share her light. Though it’s such a painful road we walk each day Lord you have your ways, this I pray. On the day I stand before you, she’ll stand right by my side When you look upon me, head hung down in shame I’ll feel the blame, she’ll be by my side, she’ll look at me, And then she’ll speak, in that precious voice. Don’t worry ‘bout him my lord, cuz you see, He’s with me...

She is with me. It's as simple as that. And I could not be more thankful for that. McKenna has been through so much difficulty, pain, frustration and
anxiety. She has endured the struggles with dignity and strength that only comes from the Lord. She has also experienced such joy..she doesn't hold back her excitement or her tears. We let our "socially acceptable" norms get in the way of sharing what is truely in our hearts...not McKenna. With raw emotion, she shares her joy, her fears and her love.

Happy Birthday, my incredible McKenna. You have come into our lives to teach us so much. You are a gift from God...and I am so proud to say that "She's with me."

Morning update

Maisy had a pretty rough night. When she stayed sleeping, she was doing fine. But, as soon as the sedation would start to wear off, her heart rate and blood pressure would elevate, her temperature would increase (to 101), and her oxygen levels droppedinto the 70's. They had to increase her oxygen and sedate her pretty heavily again. She seems to be resting well now.
Her hemoglobin is at 8. They will transfuse if it drops again and she gained a pound a day mfor the last two days. That would be excess fluid...and you can see it everywhere on her. She is very puffy right now. They say that all of this is to be expected after such an invasive surgery. Although, that just doesn't help much when you watch your baby having a hard time.
I slept on a gurney in the short stay unit. I slept like a rock for 5 hours so I feel well rested for now. I can feel the prayers for
She is in such good hands here. I don't have to worry when I leave the room for a minute or two. She has one on one critical care nursing. Most of them know her very well from her 8 month stay here at birth. We are so thankful for this hospital and the people that provide such compassionate care here.
It is McKenna(17) and Hope(15) birthday's today! I will write more later about these two when I get some time later.