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.