Monday, March 7, 2011

Lots of information and changes......

Well.......sigh. Lots going on today and yesterday since we brought the princess home from the hospital on Saturday. This was the consensus on Saturday when we left Bronson: echo looked good except for some mitral valve leakage (which we knew about), belly ultrasound showed a lot of air/gas and didn't look concerning, labs all looked better from previous day after a bolus and continuous maintenance fluid over night, and X-ray indicated pneumonia and was treated with IV antibiotics in the hospital and came home with script for it. I will say that Sunday morning, she ate breakfast extremely well which indicated to us that she was on the upward swing. Throughout the day, she did fairly well and then that evening, she was swollen bigger than ever. Ugh! Worried all evening on what we should do, we let her sleep and then in the morning, first thing, call Meg and the pediatrician. Called both and the decision was to head to U of M. Right decision! Since we arrived at the ER today, we have confirmed that she does have pneumonia and her lab work has improved. All same as Bronson's results. Good! But......after doing another ultrasound of her belly, we were told that her bowel was EXTREMELY loaded with poop! What!? What about the air diagnosis? Grrrrrrr. Wish that was it! On her echo, it concluded that her left atrium is smaller therm her right, of course the mitral valve leak, and her heart is very stiff when it's supposed to be relaxing after it contracts. Both of those things are sign of possible rejection. Sigh. So, being cautious, we are headed over to the ICU tonight for close monitoring as they do the following in preparation for a heart cath and biopsy first thing in the morning: give her an IV diuretic to try and release the fluid from her tissues to release the swelling, give her Albumin to help increase the protein levels in the blood stream so that when they give her more fluids to re-hydrate her, the fluid will hopefully stay in the vessels instead of the tissue. They will also give her a large dose of steroids in preparation for any treatment that needs to be done in case we are dealing with rejection. Now, if it is rejection, we were relieved to hear that this is treatable and she will be fine once the meds are figured out and dosed for her acceptance. Thank You, Lord! Please join us once again in prayer that her little body still likes the donor heart and that we can set our minds at ease of this worry. Amen!
Now, the other issue is with her poor little poop filled belly. Thinking that all of these issues are heart related, they aren't going to worry about
that at this time. One thing first and dealing with the most important one is the priority. After the results of the biopsy, we will be able to move forward with treatment but knowing if it is rejection or not will determine how they go about treating the other things.
Thank you again to all of you who have prayed for us and continue to lift our family. I will update again after the heart cath tomorrow morning.
Heart Blessings ~
Suzie

12 comments:

Janel said...

Prayers continue for all of you. Thank you for the update.
Love,
Janel and Jillian

Elaine said...

Suzie dear, Thanks so much for this lengthy post...we have all been stalking, as you can well imagine. I reposted this on my FB page, because a lot of my friends are praying, but haven't ever been to the blog. Lots of them are young moms and they just ache for you. So sweet of them.

I am so glad you are there and that the heart cath is scheduled. Please know we will be praying for NO rejection and sending all our love to you and JR. Please give extra hugs to the princess.

Being here instead of there is actually painful...I love you so. Call if you need ANYTHING.

Love, Elaine

Katie said...

We'll be praying for Lindsay!!! Poor little girl! I'm sure you're relieved to be at U of M and that they can quickly get a handle on all of this. Heart hugs :)

Melinda said...

Praying for Lindsay! I am glad to hear that it is treatable. Hugs to our little heart friend.

Pianomusic821 - Kandice said...

Suzie, your family has touched me so much, I love yo read your blog so much. I wish I could meet you gouys in person one day. have you guys ever been down to utah for one of paul's concerts? lindsay is such an inspiration to me. she has inspired me to want to do so much more than to be just a school teacher, I want to do something n the medical field one day, no matter how long it takes me to get there. I have always loved helping people, and caring for people. I sure hope that this is not rejection for the sweet princess, I love her to peices even though I don't know her, and my heart aches for her. she is always in my thoughts, and always on my mind daily. I hope all goes well tomorrow......I hope you don't mind if I shared a litle bit about lindsay on my blog, but I had to spread the word, to get the prayers going for such a beautiful princess....heart hugs...

The Hands said...

Oh Suzie, I'm so sorry that you have to start on this roller-coaster ride again. Will continue praying for your family.

Ann Green said...

We all know the power of prayer works!!!!! PRAYERS!

Kyle Keiser said...

Always on the side of the princess and lending so much support in any way we can. Stay strong, sweet girl (that means you mama) and the rest of the family. Cry when you need, lean if you must and be angry when it works.

xox
kyle

GrannyApple said...

We are praying for the princess and that God will protect her and whisper in the doctors ears to tell them what is going on. Lots of people storming the throne room of our wonderful God on your behalf. Thanks for keeping us updated.
Love,
Jan Welte, Lindsay Groen's Granny

Anonymous said...

Our prayers are with you all...The Roe Family, Galesburg, MI

Rebecca said...

Praying for your girl...as always! Hoping the results are in and are good!!!! Praying you ALL through this and sending lots of heart hugs and angel kisses your way...I know she's being watched over well! ;)

Love you!

Karen Hesley said...

Dear Dean Family,

It was great to get up this morning to read that there is NO REJECTION. You are in the best of hands and AA and with all the prayers helping the situation. Thankful we are able to help through prayer. Thanks for keeping us posted on the developments. Try to rest and take care of yourself too.

Karen and Rob Heasley