Wednesday, August 06, 2008

Tough Day

Emotional material, proceed at your own risk.
Pictures at the bottom of the post.

I have had a really rough couple of days. Call it a reality check of the worst kind. Elaina continues to improve, but I've been forced to face the reality of the situation. It has been really difficult to make some of the decisions I've been asked to make, but I feel like I have made the right ones.

I've been told for the last month that there are no surgical options left to repair Elaina's heart. The doctors now think that the central shunt that was put in during her last OHS is not open and giving her adequate blood flow to her pulmonay arteries. This is why she continues to look dusky and her saturations stay in the high 60's to low 70's. To open the shunt would mean a trip to Cath Lab. Unfortunately, the risk outweighs the benefit of this. They only way that they would be able to get good access to the shunt would be to go in through her Glenn. Not only is this highly dangerous, but a clot in her Glenn would be fatal. All of her past cath sites have clotted. There is no way to guarantee the success of this procedure. She would also need to be re-intubated for this procedure, and I just cannot do this to her. Again, the risk outweighs the possible benefits.

Due to Elaina's pulmonary hypertension, and her partially collapsed lung (permanent) she is not a candidate for a heart transplant. Here's where the biggest problem lies. Her pulmonary arteries are small and the doctors are not certain that they will grow with Elaina. They have told me that it is quite possible that as her body outgrows her pulmonary arteries, she will continue to have saturation problems until her heart and body just give out. They do not know if this will be weeks, months or what. They cannot give me any idea of what is going to happen from this point on. BUT, if Elaina's pulmonary arteries do grow, there may be surgical options available for her when she is 2 or 3 years old. There is just no way to predict the outcome. I sure wish I had a crystal ball sometimes...

Yesterday they asked me to think about signing a "Do Not Resuscitate" (DNR) order for Elaina if her heart stops. They believe that CPR would not be successful and that it would be a very traumatic way for Elaina to die. Even if they were able to resuscitate her with the CPR, there would be no way to surgically repair the damage done to her heart by the event and/or the resuscitation efforts. It would just prolong the inevitable. I completely fell apart. I feel like my world is crashing all around me. Needless to say I had a night filled with prayer. I am so scared and only hope that I have made the right decisions today and can continue to make the right decisions for Elaina's future.

So, now we get to the new plan for Elaina as well as a possible new option to explore!

Right now, the plan is to get Elaina strong enough so that she can go home and have time with Mom and Ben. She's back onto regular nasal cannula oxygen (currently 3 liters) as of today. We'd like to get her back down to 1 liter if possible. We still need to get her diuretics and electrolites balanced. We're getting close, but it will still be several days before we get there. We are hoping to be able to transition to the floor before going home. This is just to make sure that Elaina is truly stable and to give her time to gain more strength. Going home is in the future, but the most likely scenario at this point is that we are going to go home on Hospice care. Not exactly what I'd had in mind up until now, but it's probably for the best. Just because we start out with Hospice does not mean that it will continue, if Elaina once again proves everyone wrong, it can be cancelled and we can move forward in a different direction. The benefit is added peace of mind at home and some helping hands for Elaina's many medical needs. The point is that nobody is certain of the outcome and I want to be as prepared as possible.

Now, there is still an avenue of hope that I am going to pursue. Just because Elaina doesn't qualify for a heart transplant doesn't mean that we're out of the running completely. One of Elaina's doctors thinks that she may possibly be a candidate for a heart and lung transplant. Here's the twist, they do not perform this procedure at Primary Children's in Salt Lake. The nearest facility that performs this procedure is Lucile Packard's Children's Hospital at Stanford. Dr. Zebrak also works at Stanford and she said that if we get the ok from Elaina's cardiologist, she will personally contact the team at Stanford and see if Elaina is a candidate for this procedure. She said that she would also be able to arrange transport for Elaina if I were to decide on this course of action. At this point I want to at least know what our options are, I don't know if Elaina is even eligible for this, but I want to be able to make an educated decision. When it's all said and done, I want to look back and know that I didn't leave any stones unturned and that I did what was in Elaina's best interest.

I also know that God works miracles. I may never even need to go to these extremes. Ultimately this is all in God's hands, and it is His plan that takes precedence. I truly put my trust in Him and hope that whatever the outcome is, it will be a miracle in our lives.

That said, here's some pictures. She's such a sweetie!

No NJ!! She sneezed it out! I had to take advantage of the cute cheek moment!

Thanks Brynn for bringing up the cute flower backdrop!

You've got to just laugh at the ridiculous c-pap setup that she's wearing! This is what they plan on sending her home with!!! Funny thing is, she tolerates it just fine while she's sleeping. Go figure!!


Amber said...

Lots of thoughts going through my mind...First is...I wish I were there to give you a giant squeeze! You are so brave...regardless of what you may think, you're my hero! Now thoughts on that sweetest baby....CPAP, they look CRAZY...but they give much relief..I have one(I won't go into "me" at this point, but I know first hand:^)) and was secretly hoping this would be an option for her. a peds home nurse, I have entered several homes as "hospice" and will say that a fair # of those children....proved everyone wrong! I know, that you know, God is in control...You encourage me to love my kids as much as I possible can..EVERYDAY!
Still praying....

Mike and Rebecca said...

I know that you have a tough road with Elaina's trial. You are doing the very best for her and the situation you have been given. The Lord understands every tear you shed and decisions that you have to make on her behalf. We have prayed for her and your family, only Heavenly Father knows the outcome. Please stay strong and know that we are always hear to lean on.

Hugs & Prayers,
Mike & Family

Stephanie said...

I remember being in your situation where the prospect of a heart-lung transplant seemed to be the only hope. Although our situations are very different, I know you will make the right decisions for your daughter. You've given God lots of room to work and he will continue to do so! Much love...

Brynn said...

Just an amazing sweety... thinking of you always...

Kathy said...

OH MY GOSH...before you wrote about Stanford...I was going to put MY BIG TWO CENTS IN and tell YOU TO MAKE THEM SEND STANFORD her records. Dr. Hanley is miracle worker!!! (and Dr. Perry has done all of our caths up there...and he is amazing (google them both.) If Elaina's going to fight with her. Stanford reviews cases on Wednesdays (I think)...and they all confer and will shoot you straight about what they feel they could do to help her of if they agree with what's being done now.
Isaac had tiny, tiny pulmonary arteries. Dr. Hanley connected his pulmonary artery directly to his aorta and had that much blood rushing into his lungs for about three months until we had out unifocalization surgery...that's where he takes the collaterals (does she have those) and bundles essence...making new pulmonary arteries for the babies.
I'm glad that you have a contact doctor there that works with Stanford...if not, I will give you my cards number and he has Dr. Hanley's cell number.

You guys are just breaking my heart. We'll keep praying on our end...and you keep it up on your end.
PLEASE email me or call me if you have any questions...but, I LOVE LOVE LOVE Stanford!
lots of love,

Kathy said...

Is that Dr. Zebrak a cute blonde?? OH MY GOSH...tell her that you know the Roller baby (he was in the CVICU for a month...she was there once when they extubated him and then had to intubate him again)...but, ask her to tell you about Callie Stapp.
(her care page is Cstapp)....that will show you the miracles that happen at Stanford!
ok...bye again!


We're still praying for Elaina every day and spreading the word on our blog. We're all here for you! Michelle

Gourley Family said...

We are praying for you, and know that you will make the best decision for your sweet princess. We are here for you, and are not giving up! I know it is hard to think about saying goodbye, but know if it does come to that, that she will know how much she is loved by so many. We love you Hollie and love Elaina.
Emily and Mike

cecilia said...

I can't begin to imagine what you are going through and have no idea how you stay so strong for your family. I will continue to pray for Eliana. I am sorry that I am unable to offer more.

Vaeh's Blog said...

Oh, Hollie!!! Not at ALL what I was expecting. I'm so close to tears for all of you right now. So much you have gone through & now to have this added in?!?!? I'm hugging you all the way from Ohio!

She looks so adorable with the pink bow in her hair, & I LOVE the tongue sticking out:0)

I've seen Vaeh on the brink of death, & have seen her come back from it, stumping the docs! I am standing with you believing God Does still perform miracles! She is such a tough little cookie! Glad they are exploring all options & not 'giving up'!

Know that we're always thinking & praying for you! May God wrap His peace around you!

Much Love!

Kelly said...

Ugh. I'm so so sorry that you have to endure all of this. You're an incredible mom and you're right, only you can make those tough decisions for Elaina. You're a fighter, and so is she! She has proved that for weeks now. I know it feels like a lifetime while you're sitting in a hospital, but every moment is precious with that little girl of yours. Who, by the way, is darling with her bows! Look at those chubby cheeks!

I personally know Dr. Zebrak from Stanford and she's amazing. She was with us on the hardest day of my life and works so hard for her patients. Please tell her Brooklyn's mom said hello.

I second Kathy's comments. Let Stanford review her case. Sometimes fresh eyes are good. Remember when that new doc came on board and said that they needed to redo her Glenn? He made her turn around possible. Maybe Stanford will have a fresh take on her care. It wouldn't hurt. They do amazing work.

I'm hoping she gets to go home to be with you soon. But, turtle steps are good... they won't send her home until she's ready for it.

Deep breaths.... you're an amazing mom and she needs your strength right now.

Vanessa said...

God certainly does miracles and that is exactly what I'm believing for. You stand strong in your faith and know that it is God's will to see Elaina through this.

I'm so glad they are going to have Stanford look over her medical files. I have heard such great things about this hospital and especially Dr. Hanley. I'm sure your overwhelmed right now and I wish I was there to give you a big hug.

Keep on keeping on...



Lisa Huckleberry said...

Hi I was given this link through someone on my T21 support group and just wanted you to know that I will say prayers for your beautiful girl! Also, I know you have probably researched all avenues and I have not quite read all of your story, but I wanted to tell you that my daughter's heart surgeon in MI is considered one of the best in the country - people from all over the world come here to see him. His name is Dr. Edward Bove and he is out of U of M hospital in Ann Arbor, Michigan. Like I said I know you have probably researched everything, but if there is any hope that someone could help I just wanted to forward this info to you as well. If you google his name you will see all types of testimony and also here is a link to his office/info.

He is the Chief of Cardiothoracic surgery there.

Again keeping you all in my prayers!

Lisa ( mom to Lily)

Ann Stewart said...

You don't know me, but I have had a grandson at PCMC this year with HSLS. Don't give up hope, keep your faith strong and love your little Elaina with all your heart.
We had a miracle happen in our lives and I know that Heavenly Father cares about all our little heart babies. You are in my prayers.

Bethani said...

Continuing to pray for you and your strong little family! If you do end up coming to Stanford, I am about 40 minutes away, if there is anything I could do...
Everyone is sending their love and prayers your way!

Mina said...

I'll keep praying for little Elaina.

Mandy said...

Know that your family is in our thoughts and prayers. We had a 28 week preemie and God moved mountains for him. Keep the faith and I pray he does the same for you! Your strength, dedication, and faith is inspiring.