Thursday, November 04, 2010

30

Lily had a bit of a rough day yesterday. She got a random bloody nose in the morning, and after being suctioned and cleaned up she was having a harder time breathing. Eventually she was put back on high flow oxygen. She also looked a little puffy to me, and when Zar went to visit her last night she looked puffy enough for him to mention it. Lily ended up getting Lasix to help her pee off extra fluid, which apparently did the trick as her breathing got easier and her lungs sound better this morning. Of course the fact that she is getting puffy isn't a good thing, and I am hoping today the docs will do another x-ray or echo or something to see if she is going into heart failure. With everything going on yesterday I didn't even ask about surgery or the pH probe results. Unfortunately the doctor on now is that same doc who didn't want us transferred from St. Marks just because he didn't want to deal with us. He came in yesterday, looked at me, said hi, and then asked the nurse if I was "the mom". The nurse said yes and the doc walked out. Never saw him again. I don't think we get along well. I'm glad he will be gone again after tomorrow.
So anyway, I'm feeling down today with these new developments. It's also my 30th birthday today. It would be really great if something positive would happen today for Lily. This is just a difficult place to be in. I'm not so sure now whether she should even have surgery for her feeding issues if her heart just isn't healthy enough to sustain her. This not knowing and waiting around is the worst. And who cares about her thyroid function and such if her heart just isn't strong enough? Frustrated and sad.

12 comments:

Becky said...

Happy Birthday Erin! I'm sorry today has been a hard day and I'm MAD at the doctor that treated you with such callousness. SERIOUSLY? Praying that answers will come and that sweet Lily will be strong enough to go home with you. xo

Cristina said...

Bertrand had edema back in June--doctors weren't sure whether it was steroids or heart or liver or fill-in-the-blank--but lasix helped. (We never learned the cause.) It sounds like you caught Lily's quickly, so I hope Lily's medical team gets to the bottom of the cause soon.

I hope you get some good news for your birthday! Congratulations on the big 3 - 0! :)

MK said...

Happy Birthday Erin. I'm sending positive thoughts to you and the whole gang - here's hoping that Lily-Pie is home sooner rather than later.

mare said...

Happy Birthday.

I am sorry Lily isn't having a good day. I pray that you receive good Lily-news soon.

xo.

Anonymous said...

Happy, Happy Birthday, Erin! May this be a very happy year indeed, and may the troubles be just small bumps in the road for you and yours. You are so good at handling the bumps in the road that you are a true inspiration to others.

Here's to a great year!
xoxoCarolyn H.

paige said...

wow - i'm not a fan of doctors, & that one sounds like a real loser. :( Hope he is quickly replaced with the kindest, gentlest sort - the kind that still remembers what it's like to have compassion & understanding.
Happy 30th - fwiw, your 30's just rock. 20's are over rated :) Just sayin'.

AussieJenn said...

Your little sweetheart is constantly in my thoughts.

I do so hope you get some really good news on her health to make your birthday a happy one.

Best wishes to you and all your lovely family.

Allison said...

Hope the day got a little better. Love you very much birthday girl. Love lily-bell too. xoxoxox

Amanda, Jared and Ella said...
This comment has been removed by the author.
Amanda, Jared and Ella said...

Happy Birthday Erin! I'm sorry that Lily had a rough day. Know that you and her and your family are constantly in our thoughts and prayers.

Amanda, Jared and Ella said...

That deleted post is from me, I had a misspelling and the darn thing won't let me just delete it and repost it. It has to tell you that I deleted it. Sorry. :)

Sarah B said...

Happy 30! You don't know me but I have been following your blog for awhile. I'm sorry you aren't having a better day. What a wonderful gift some improvement for Lily would be. I do hope you are able to take some time to celebrate your life, even the rollercoaster you've been on lately. You give so much as a mom, and deserve some happiness for you.