Tuesday, May 19, 2015

Tiny P's Tiny Parts...

Our tiny P has seen a slew of doctors lately, and still has so many more to see...

She has been to the liver specialist several times, and gotten lab work done for them more times than I can count. She has also learned how to pee in a cup. I am, in a strange sort of way, extremely proud of this.


In fact, tiny P has gotten so much lab work done lately, that she has excepted this as part of her weekly routine. The girl who used to scream herself blue, now doesn't cry at all, and even "helps to find a good vein. It's easier for me, sure, but it is also SO sad. My baby has accepted that crying doesn't do her any good for these owies, because no one saves her, and so she has given up on crying and fighting.
This past week when we were at the hospital getting lab work, the tech (who has done tiny P's blood work many times, and remembers the screaming girl) commented with surprise that she wasn't crying at all, and tiny P said "no, I just very brave." She counted the vials of blood (5!) being drawn, and after  the tech was done she said "I think that's all the blood we can get out of that vein," and tiny P lifted her other arm, and pointed to a vein, and said "oh, how about this one?" Bless it. I just can't even stand how cute and sad it is.


The GI doctors (liver specialist) are very concerned with tiny P's tiny liver, and we have not gotten very good news regarding that. We will find out soon what the latest blood work showed after she was started on several new meds, but they feel like her liver is so shot that she needs a new one. This might normally be fairly straightforward, getting a liver transplant, in the scheme of the whole transplant world, if her little heart were not in such bad shape. But her little heart likely won't sustain a new liver...

So what to do? No one seems to know, but there will be much discussion of options in the weeks to come. Our original hope was for tiny P to have the Fontan surgery, but the Fontan is hard on a person's liver, and tiny P's liver is already shot.


We also saw her cardiologist this past week, just for a checkup to follow up after her last hospitalization. We had another appointment scheduled with him for the first week of June to then schedule her next heart catheterization at the end of June, but he decided to cancel that appointment, and go ahead and schedule that heart cath, so tiny P will go in on the 11th of June for her next heart cath, and they are discussing whether or not they should do a liver biopsy at the same time, or schedule that separately. I am just relieved to have a cath date, and to see what they find out, and make a plan for our girl.


Thank you for keeping our baby girl in your thoughts and prayers! We still have to visit the geneticist this week, and then see the kidney specialist at the end of June...hopefully there might be just one bit of good news in there somewhere for our girl!

5 comments:

Renate said...

What a sweet baby! I can't help but worry with you. But look how happy she looks.

Musings from Kim K. said...

Continued prayers for ALL of you!! Bless your sweet little family.

Debbie Sauer said...

Praying for all of you. Blessings

H said...

Prayer warriors on it! We are continuing our prayers for the good news to come.

Brianna Wachter said...

Aww...tiny P. So brave. So strong. And, yes, it breaks my heart that any kid should ever have a reason to be that brave...but I thank God for making her such an amazing person...not many kids could handle all she has been through and still have that beautiful smile.

Which geneticist is P seeing? Dr. A.L. manages Addison's care.

Many prayers for clarity during all these difficult decisions! Love and hugs,