Monday, October 18, 2010

The fork in the road

It seems like as time goes by things get harder as opposed to easier. Not so much in caring for Grace, but more so in the decisions we're having to make.

After Grace's choking episode last week Holly and I have talked a lot about it. We've been put in the position of having to decide when to prolong life and when to let nature take it's course. This is a very difficult thing for a parent to face. We love Gracie so much it pains us to even think about having to make such decisions. Yet these are the issues we're facing on a daily basis.

Today we had an appointment with her neurologist, Dr. Friederich. As usual we went in with a list of questions and he took his time in answering all of them. However, one question seemed to be more difficult for him to answer then the others. We asked him to write an order for an Apnea monitor so we could be alerted to any changes to her breathing. Surprisingly he was very reluctant to do so. Not because of the cost or any adverse effects to Grace, but more so for us.

He told us a story about another family he knew in which the wife had a seizure disorder. One night she died of SUDEP (Sudden Unexplained Death in Epilepsy) while her husband was asleep next to her. When he later learned of SUDEP he was understandably angry no one ever told him about it. He felt if he would of known he could of kept a better eye on her. It wasn't until later he told Dr. Friederich that in hindsight it was better he didn't know because he would have been constantly worried about her. I think for this reason he was reluctant to order a monitor for us. But after seeing how persistent Holly was he eventually relented and wrote an order for one.

We also talked about starting the ketogenic diet now even though she's still too young for it. We feel it might not be the opportune time to start it, but drastic times call for drastic measures. So if that means starting it a couple months earlier then it's been tested so be it. He was going to have the Kaiser group in Hayward that specializes in that diet get in touch with us to see if it would be appropriate.

Towards the end of our appointment he thought of something else and said he'd be right back. He came back a few minutes later with a handout about another rare seizure disorder called Migrating Partial Epilepsy in Infancy. It's very similar to EMEE and something we might look into further. He knows of a patient who has it in the bay area and will pass along our information to his mother. He said she's done a lot of research on it and she could be a good resource for us.

Shortly after getting home from the doctors appointment the UC Davis Hospice nurse was here. She usually comes on Mondays to check in on Grace and order any medications or supplies we need. On today's agenda was the replacement of her NG tube. We have to do it once a month and last time it took a few tries. She also had with her a medical student and the Social Worker.

Everyone was in Grace's room while we did the procedure. The nurse and I were the ones primarily working on Grace while putting it in. About halfway through the procedure Grace started to choke and stopped breathing. We pulled the tube out and I lifted her head with my hand. Immediately her color started to go pale and I could see blue showing through. I then proceeded to give her a breath of air and a few chest compressions. After a few seconds of no response I gave her another breath and could hear Holly getting upset. I then turned to the RN and said do you want to step in. She moved in picked Grace up and put her over her shoulder and slapped her back a few times. Slowly she started to breath again. We laid her back down, put her oxygen on and monitored her breathing.

After a little while we tried to put the NG tube back in and encountered no further problems. Once we checked the placement we put her back in her crib to rest. Afterwards we all migrated out to the living room to talk. It was at this time that the nurse said she was hesitate at doing the CPR since that's not her role with Hospice. This was rather alarming to us. We assumed being a nurse you're always going to be in life-saving mode, but that wasn't the case. She was very diplomatic in how she explained it, but life-saving is not hospices' role. Even though she knew Grace was choking due to the NG tube she couldn't try to revive her. But at the same time she said she would support us and assist us at reviving Grace but wouldn't be actively involved.

So as you can image this was disturbing to us. We assumed having medical professionals coming into our home to attend to Grace would be doing everything they could to keep her alive. But that doesn't appear to be the case. In a lot of ways choosing to bring Grace home under Hospice care was a death sentence. It appears we have higher expectations for Gracie than her doctors and hospice.

Clearly it's going to be up to Holly and I to decide what's best for Grace in a critical situation. Unless her brain shuts down or she stops breathing due to natural causes we're going to continue to take whatever measures are necessary to revive her. We hope we're not being selfish taking this approach, but we just can't let her die if we don't feel it's her time. It's such a tough time for us. No parent should have to live day-by-day wondering if their child is going to die and what they should do to prevent it. We just love her so much and don't want to lose her. But eventually we're going to have to make the most heart wrenching decision of our lives. I only hope we can have the strength to do what's best for Gracie.


  1. that is very scary to hear, i had a friend go through something similar only 4 months ago, she's an EMT only 20 had her baby and had to make the decision to let her go, i can't imagine ever making that decision myself or even being in her position but i know that the drs had a similar attitude when it came to reviving her daughter which infuriated her. May i suggest looking into an alternative to the hospice nurse? maybe looking into a freelancing nurse? i'll be honest i'm not sure how that works but just thought i'd throw it out there.

    I will pray and hope for gracie, keep your expectations high dont settle, its clear how much you guys love her and my heart aches for youguys when i read about the touch choices you have to make.

    sincerly wishing your family the best


  2. Brien you and Holly were blessed with Grace and you are doing what any parent would do to prolong her life and to help keep her here as any parent would want for their child, i totally understand that choice you are both making for Gracie and its nobody else's business to judge you...Corey's dad and i had to make that decision that no parent ever wants to have to make regarding your childs life

    we as your friends are here to support you both and be there for you throughout this whole ordeal and we are not here to judge you in any way~we all Love you,Holly and Grace and will continue to do so

    Gracie couldnt have chosen better parents than you and Holly while she serves her purpose here and you are both amazing parents and i totally understand why you wonder if your making the right decisions and you are making the right decisions for you,Holly and Gracie

    we all Love Gracie and you and Holly~ I will continue to pray for all of you and i am always here for you

    stay strong and dont lose Faith <3

  3. Thank you for your brutal honest post. Our hearts are breaking for you and we are crying with you. We are praying for strength, wisdom and clarity.

    Your friends in Chicago-
    Jeremy & Stephanie Lopez

  4. This brought tears to my eyes, my thoughts, prayers and heart are with you at this time. I can't imagine having to go through something like that and my thoughts are with you knowing that a decision like that is part of your day to day life.

  5. Our hearts are aching, tears just won't stop flowing. Words cannot express how much Grace's story has touched our lives. We are keeping you in our daily prayers. For now keep doing what you're doing and let us know how we can support you and your family. Holly & Brien you are truly amazing parents and Gracie loves you so much. Don't stop believing in miracles!

    All our love, PJ, Mark & Audrey Decker

  6. Brien and both are so amazing!! Gracie is YOUR child...not the neurologists, the hospice nurse, or the social worker. Your faith and your hearts will lead you in the right direction when a choice like that needs to be made. Gracie is so lucky to have you both as parents. I know you may feel helpless in so many ways, but you are so amazing strong! And most importantly, Gracie feels that!!

    One of the first things I have learned on this journey is that nobody will be as big an advocate for your child excpet you. It was so disheartening to come to grips with that. You want so much to put 100% faith into those that care for your child, obviously since they are the doctors. But you are the parents and know your child more than they ever will. NEVER ignore your instincts or your gut. I'm sooooo happy that you pushed to get the Apnea machine. It will bring you more peace than anything!!

    Also, with the Keto diet there is a nutritionist here in Sacramento that specializes in it through Sutter. Maybe working with Dr Asaikar you could possibly get a referral through there (it's closer :)) When we went through the initial phases of learning about it, it seems like there are quite a few appoitments that are needed with the nutrionist. Her name is Heidi Au-Young and she is at Sutter Memorial. We actually have an appointment with her on November 8th.

    Continue to stay strong and don't lose that faith. Gracie is so loved and there are so many people praying for her. I know she is in our hearts here and you all are in our prayers.

  7. Im so so very sorry to hear about all the problems that your baby girl is going threw, its a parents worse nightmare to see their child so sick. This past May my sister lost her Baby Girl due to a very rare disorder that we didnt find out about until she was 22 weeks pregnant. None of the doctors knew or had ever experianced this type of disorder that little Isabella had or even if she would make it, but that didnt make us lose hope or faith in Isabella. All we could do was hope and pray for the best and then leave the rest in Gods hands. You and your family are in my prayers daily and even tho I dont know you guys just know that I am thinkin and praying for you guys everyday!
    Best Wishes,

  8. and god bless Holly. Grace will always be your baby