Monday, March 8, 2010

Where We Are With Rosie

My day started knowing that at 4pm this afternoon, the cardiology case conference would be discussing Rosemary's failing heart. This has been the most difficult week of my life. Rosemary's little heart is not working so great, she is experiencing Fontan failure, this was the supposed to be her last repair. She has been on TPN nutrition for about 6 weeks, food through an IV, to rule out her pleural effusion problem stemming from a GI issue. She has had a GJ tube placed and replaced for feeds 3 times in one month. When I got here last Monday, her face was puffy, chest & abdomen full of dark blue veins and unable to speak or be comfortable. They restarted her formula feeds on Wednesday afternoon with hopes on sending us to a step down facility in Baltimore. By Friday morning, she was in respiratory distress again and her pleural effusion had returned. They gave her a total of 5 doses of IV lasix Thursday and her xrays that night were better. But Friday morning, she was working to breath again and she just wasn't doing well. Her xrays looked bad so they gave her another 5 doses total of IV lasix to combat the effusions that had again returned.

They moved us to a flexroom in the Heart & Kidney Unit, which has the ability to be a CICU room if necessary. There are basically two options: 1) Another open heart surgery to try to repair the narrowing of her atrial septum, which they felt was the root of her effusions. The pressure gradient across the septum and Fontan have been slowy increasing and not going in the direction we had hoped. This surgery has a 50% chance of survival with the possibility that she would need a pacemaker, and at best, that surgery may only have a 10% chance of improving the overall condition of her heart, 2) Heart Transplantation.

The surgeon is not crazy about the first option, he is thinking that transplantation would be Rosie's best chance. Her cardologist agreed. Because they would be sending us to NY Presbyterian where she had her first 2 open heart surgeries, her Cardiologist there would oversee the transplant evaluation. She was not excited about the transplant option for Rosie.

That's where we stand. It's been difficult coming to terms with these options as they are the only ones we have. Each day is a little harder, facing the possible outcome of losing her either way...well, how do I begin to accept that one. I'm dealing. Accepting. Praying. Knowing that God has complete control and whatever his will, will be done. She was born with half of a heart. Twenty-five years ago, she wouldn't have mae it 3 weeks. We intervened medically to try to repair it. She has done everything that she is supposed to do, and she is still suffering. If she stays, I get to be her Mom. If she doesn't, I'll have to wait to see her when I get Home.

Ultimately, my main concern is her quality of life. It has been slowly but steadiy slipping out of our grasp. She is working so hard just to breathe. I could feel this moment coming around the corner last week, all of the doctors and nurses became much more attentive to Rosie and my needs. Their faces were undeniably readable. Sorry smiles, asking if they could do anything for us. This has increasingly become the norm for me as I walk through the hallways that have been my home for the last 5 1/2 months.

During rounds this morning, I told the doctors again that I am a reality based Mom. I like to know the facts. I want to know exactly what they are thinking and feeling in their gut in the 3-5 seconds when they leave my door until they get to the next. I need closure on the facts so that I can begin to deal with the emotional overhaul that deciding on whether or not to try for a transplant is going to be the absolute best decision for Rosie's quality of life. There are a few other major elements that are playing into this picture for us. Her lungs have not been doing so great with these effusions. She now has a pneomothorax, air pocket, developing in her left lung and she still has an unknown pocket of fluid or substance in between her two right lobes. Her liver has been put to the test because of the Fontan, but the 6 weeks of TPN nutrition has also now taken its toll. Her liver is swollen and has dropped. She has never really been able to eat normally and has thrown up just about every day of her life. All of these things will weigh in on whether or not they will even consider her for a transplant.

If we decide to go transplant, we will be sent back to NY to Children's Hospital in Manhattan. We will have to make sure that we are within a 3 hour distance from the hospital so that in the event that a heart became available, we could be there in a minute.

We have a lot of extremely difficult life changing choices to consider. I am scared out of my mind to make any decision. I selfishly want my daughter to live because I love her and I want her to be well. But as I sit here typing, I can hear her breathing getting louder and faster, she is working harder everyday just to maintain vital signs. It's not what I want for her. I don't want her to struggle anymore. I want her to be the strong, full of life child I knew a year ago.

So I will pray tonight that wisdom in this situation be evident, that my gut feeling be my guide. That whatever is down this pike for Rosie, be the absolute best decision possible for her quality of life. Please pray too, for Rosie's strength to fight, our strength to continue to be a light for her and keep her spirits as best as they can be. For our families. I have two other children that love her. All of our hearts are mending at the mending that's been done to her's.

Thank you for reading. If you have any thoughts, advice, words of encouragement, I'm all ears. This is difficult. I am finding peace and small answers in the quiet of the night.

5 comments:

Amy said...

I want to drive to you and hug you. I don't have words of wisdom or any advice. I want to hold you as a Momma too and tell you that God will take care of you. But I am tearing up as I write this. I will pray for you Lori. I have followed your story since Rose's birth , through Brie and now Fb, I will pray for you. That's all I can do, and Know that we are here for you in any way.

jparker601 said...

LITTLE Rosie is beautiful....GOD will give u the wisdom and guide u to do what is right for her...GOD BLESS ALL OF U....

Mended Little Hearts of Central Virginia said...

Oh Lori I wish I had words appropriate to console you in such a difficult situation. Maybe there are none, but please know that you aren't alone, that there are so many people you don't even know lifting you up in prayer. I am also a heart momma, although my daughter has TGA, not HLHS. Dr. Jonas and Children's offered us hope when we didn't find much elsewhere.
My family will be keeping yours in our thoughts and prayers, hoping that you will find some clarity in your situation.
Lots of love,
The Kurz Family

RainSplats said...

I found your blog via Mississippi Mended Little Hearts facebook page. I just wanted to reach out to you.

I am about 18 months behind you on this heart-baby journey. My heart goes out to you. Thanks for sharing your story, your insights, and your resources.

kelly manz said...

Rosie is so precious! She is in our prayers.

Kelly Manz
http://chdbabies.blogspot.com