A Long Time Coming, Part 2

Our story continues...still on September 16th, the day Isaac was last admitted to the hospital.

When Jeremiah arrived at the hospital with my dad, he was a wreck.  Still recovering from his concussion, the day's events had been even harder on him than I think they would have otherwise.  Fear, adrenaline, and exhaustion are bad enough- top it off with a concussion headache and worsened insomnia, and he was in a bad place. Jeremiah's first concern was Isaac's brain.  His oxygen had been so low for so long, but I assured him that he had been watching me, tracking, and trying to be his good-natured self despite everything.  Isaac eventually calmed down enough to get some rest, and Jeremiah and my dad headed home.  After 3 nights in the PICU, we transferred up to the 9th floor.  Because those rooms are quieter and darker (and therefore somewhat friendlier to the concussion minded), Jeremiah agreed to stay with Isaac so I could go home.

I came home to our sweet Natalie, who only wanted to cuddle with me and hold my hand everywhere I went in the house.  We snuggled up on the couch to watch Cinderella (the new Disney movie, and it's as great as you can imagine.  I hope I always remember the look on Natalie's face when she realized Cinderella was on her way to the ball.), and after she was asleep I stayed up late eating Doritos and watching Friends.  I knew I should just go to sleep, but those amazing co-workers of mine had dropped off a kitchen full of snacks, and after all these years I can't resist that cool ranch flavor.  The next morning, I took Natalie to the Knights of Columbus pancake breakfast before Mass. I talked to Jeremiah, who said the night had gone well with Isaac, and he was okay with staying another night with him. Natalie and I would come down for the afternoon, and that night I would come home, avoid the chips and Netflix, and get some real sleep.

When we arrived at Isaac's room, there were many more people there than there should have been.  A doctor or someone assured me that everything was fine.  I brought Natalie in and sat her on the couch, looking to Jeremiah.  He also assured me that Isaac was fine now, he had just had a treatment and was having a hard time calming down and getting his saturation back to normal.  After a long while, it was apparent that Isaac was not recovering.  We had him on 100% oxygen (about 15 liters), he was exhausted but could not sleep, the acetaminophen wasn't helping him, his heart rate was sky high again, and he was whimpering and crying and grimacing.  Nothing could console him, though he obviously wanted to be consoled.  At one point I was talking to him, telling him that his sister was here.  Mid-cry, he paused to open his eyes and look for her.  He saw her, took a breath, and then couldn't hold back the tears anymore.  Jeremiah and I talked, and we agreed that we would both stay with Isaac that night.  I called my parents, who were a few hours away, and asked if they could come get Natalie, explaining that Isaac was having a really rough afternoon. We called our priest, and asked if he could come the next day to anoint Isaac. We honestly felt that this was probably the beginning of the end.  We were waiting for his next breathing treatment, thinking it would either help him or make it all worse.  If it make it worse, we talked to the doctor about not intubating Isaac.  We wanted to be able to take him home.  After my parents left with Natalie, Jeremiah and I said our goodbyes.  We took our last pictures, we talked to Isaac about all of the amazing things we have gotten to do together, I told him about the day he was born.  We told him it was okay to go, if he was ready.   He calmed down enough in the dark room, with no sounds but our voices, to finally fall into a restless sleep.  When the respiratory therapist arrived to help with his treatment, the nurse and doctor came along too.  Jeremiah and I took over, wanting to be the ones with our hands on our son.  Clenched jaws, clenched stomachs, steady hands, reassuring voices.  He made it through the treatment, it went so smoothly. We changed out his mask, gave him yet more fluids, more tylenol, and he fell asleep. This time he slept soundly, with me curled up on the end of his bed and Jeremiah asleep on the couch.

At 7:30 in the morning, Isaac woke up smiling. Bright eyes, happy coos. He wanted to watch his mobile. He wanted to read stories, he laughed, he was a completely different version of himself than 9 hours earlier.  Jeremiah and I breathed very tentative sighs of relief, still exhausted from the day and night before.  Isaac took a long nap that afternoon, just before our priest arrived.  We talked to him about funeral homes, cemeteries, and where to hold the funeral.  Not because we still thought Isaac was going to die at any moment, but because we know that his time could come soon, and this was a conversation we had avoided long enough. Father Alan anointed Isaac as he slept peacefully, and Jeremiah and I left for a care conference.  At the meeting, we talked to Isaac's pulmonologist, Oren (he asked that we call him that, but that his daughter's friends still have to call him Dr. Kupfer:) about our wishes for Isaac in light of all the recent events.  We decided to finally look into hospice, knowing that there isn't much that the hospital can do for Isaac that we can't do at home.  We have had enough experience with these scary events to know what to expect from Isaac as he recovers, and for the most part we don't need blood gas levels and IVs and chest x-rays and blood pressure checks every 60 minutes or any of those other things that have been valuable for Isaac but are now just another source of anxiety.  We have had truly amazing experiences at Children's Hospital, but we still don't want to be there.

 Last summer, when we first brought Isaac home after his 4 week hospital stay and diagnosis with SMA, we just wanted him home.  We weren't thinking much about nursing or hospice or anything.  After his second hospital stay last September, we decided to pursue more nursing help than we had over the summer.  We now have private duty nursing 5 days a week, and thank God most of Isaac's scary episodes have occurred with one of them around.  With the support we have from our families, nurses, and friends, we can handle Isaac's medical needs at home, where we can also provide his emotional, physical, and spiritual needs. It may sound funny to talk about spiritual needs for a 19 month old, but I tell you- Isaac's favorite hour of the week is the hour we are at Mass, with him in the very front row.  He laughs the greatest, loudest, most joyous laugh when Father walks over to bless him before communion.  He knows he is close to home, and he loves it.  After meeting with the hospice nurse, we learned that we can't continue to have private duty nursing and hospice care at the same time.  We were disappointed, because we were looking forward to the available 24/7 support of a hospice nurse, someone who we could call at any hour to come be with us when Isaac goes, someone who can sympathize with our grief but not feel it as acutely as a family member would, someone who has helped families through those steps.  Instead, we are using palliative care, which means a nurse will stop by 1-2 times a month to check on us, and will be available for phone consultations if we are deciding what to do for Isaac.  Another resource, even if it isn't exactly what we were aiming for.  Really, it doesn't matter.  We have no idea how the end will be.  We pray it will be quiet and peaceful and at home, but it could be quiet and peaceful and at the hospital. It could be something we see coming for days, for hours, or just moments.  It could be in his sleep, during a treatment, in the car.  We just don't know, and that,  I suppose, is why it's okay that we don't have hospice in place.

After the care conference, Jeremiah and my parents went home.  Isaac woke up feeling great after his long nap, and he and I spent the next three hours just playing.  Cars, blocks, dance party, dinosaurs. He laughed more that evening than I had heard in weeks combined, and I went to sleep forever grateful for those hours. We took Isaac home the next afternoon, still reeling from the emotional rollercoaster of the past days.  We have been home now for a week and a half, and Isaac is still doing great.  He has his ups and downs, easier treatments and harder treatments, generally uneventful days and moments that get us all shaken up again.  He has started to get startled more often, more anxious, and I have heard him cry out in fear at least ten times in the past three days, which is unlike him.  But he also spent most of yesterday talking and cooing, and after an afternoon of watching cartoons today, he laughed his adorable little "heh, heh, heh" all evening.  Now more than ever before, we are taking this one day at a time.  I didn't know it was possible to live in the moment more than we had been, but lo and behold we are managing it.

We have so many people to thank for their support and generosity, I really don't know if I can do it.  I honestly lose track.  But I will take a moment to thank the residents of Life Care, where I work when I can.  They held a bake sale the other day, which I think they do once a year.  During the planning stages, the residents decided to donate the proceeds from the sale to our family.  I was so surprised when my friend Juli stopped by to drop off the proceeds, because I didn't know about the event.  I was so touched by the gesture, by the love of those wonderful people that I get to see now and again.
Thank you to everyone for your prayers, your love, your friendship.  We couldn't do this without you.