Wednesday, November 11, 2015

Not So Wordless Wednesday...Happenings

I've written a hundred blog posts in my head, but haven't had time to get my computer out and get my thoughts down...

Life is so busy right now, and the days just seem to fly by.
Between doctor visits (and there are so many of those these days!), to caring for tiny P, who is unwell, and trying to spend as much quality time as I can with my other two to meet those needs, it just seems that the day is over far too quickly!

Tiny P was in the hospital again last week. She had just been getting more and more swollen, and her bloodwork was showing her albumin get lower and lower...we had been keeping in touch daily with her transplant cardiologist, and had been adding extra doses of diuretics, but eventually those extra doses weren't working.



Paisley has protein losing enteropathy (PLE), and even though it is always there, lurking in the background, we have managed to keep it under control and keep tiny P out of the hospital for months.

PLE is a terrible disease...there is not much known about PLE, only that there is no cure, it is always deadly, and the only cure is a heart transplant.

For now, while we wait for a heart, tiny P is treated with albumin infusions, and IV diuretics, until her albumin levels go up enough to raise her protein levels


Sometimes this process of getting our baby stable takes a few days, sometimes it takes a week.


This time, because we had already been giving her extra diuretics, and we took her in right away, it only took four days, with six albumin infusions.


Tiny P handles being in the hospital so well... she is well-loved among all the nurses and doctors, and they bring her all the chocolate milk she wants and spoil her with stickers and toys. She watches Frozen over and over and over, and refuses to watch anything else, and we humor her because she is sick, and hurting.

Her IVs never last long, because she is so puffy, and they hurt all the time, but when they go, they are incredibly painful. Poor baby has trouble moving her IV arm for a few days after it comes out.

But still she smiles. She laughs and talks, and loves to go on wagon rides around the halls to "visit friends."


We are so thankful for the care and love she receives at Children's...and we feel beyond blessed that our daughter can get the care she needs.
But we also love LOVE it when our girl is home, with her family, where she belongs. This seems to be the season for all of the things, so we are hunkering down at home, and trying to keep the germs out and our baby home!




3 comments:

Kathleen Wachter said...

Thanks for the update. Praying always... Even when we are no longer sure what to pray for. Our little ones are different and their medical needs diverse but our mother's hearts are the same. I don't know your very specific but I feel the uncertainty and the desire to make right choices at times when you have no information even to guide you. I know the joy of living and loving with your precious one while fearing always of having to say goodbye. I understand the very long days that pass far too quickly and the sleepless nights searching for answers and praying without ceasing, nights that often feel as if they will never end. We love you all and are with you in heart and spirit praising the ONE who knows it all and has it all. Biggest hugs.

Musings from Kim K. said...

Prayers for all of you. Continued blessings.

Renate said...

Just breaks my heart to hear she is not well. Prayers for her and your family.