New world

Thank you all so much for your prayers and notes of encouragement over the last week. Your support means the world to us, and there are few things more encouraging than getting a comment, email, or phone call from someone letting us know that they care.

The past week has been quite a whirlwind physically and emotionally.

Sunday Jeff and I got up in church and he read a letter detailing just where Noah was medically now and what hospice means for him. This was very, very difficult to do and I'm thankful that Jeff was the one reading the letter!

Sunday Noah also took some sort of turn for the worse. No one has any idea why, but his pain increased substantially and he just started feeling worse - more tired, less playful, etc. Getting help for the increased pain was very difficult. We didn't have an emergency pain kit from hospice in the house yet since he had JUST been admitted. The next big jump up in pain control is IV methadone which is very strong, and it simply took time for everyone to get on the same page in terms of which drug, which delivery method, which dose, etc. Everyone would love to give him Oxycontin, which is just time-release oxycodone, but that does not come in a form he can take. Dr. B wanted to be sure to do this safely - starting heavy duty narcotics on a very small, fairly narcotic-naive child in the home is no small matter. His care and concern for Noah combined with our increasing desperation to get him pain relief resulted in some frustrating moments, but it looks like we've finally hit upon a plan that will work for everyone. He'll start the IV methadone tonight and we'll have nurses in the home at least once a day for a while to monitor his vitals and be sure that he doesn't have an adverse reaction to the drug.

Just now as I was writing, a courier delivered the IV methadone. It's a somewhat unusual drug in that it's half-life (the amount of time it stays active in the body) starts off relatively short but increases as long as the drug is taken consistently. For starters, it will only last a few hours but will eventually build up to a half-life of 20+ hours. Since we'll be giving it every 12 hours, this means that he should get very steady, very stable baseline pain control.

While we're waiting for it to build up, we'll increase his oxycodone to every 2 hours. Just last week it was only every 4 hours, then hospice increased it to every 3 hours on Friday. The goal is that once the methadone builds up in his system, we'll be able to go longer between oxycodone doses.

He had a hematology/oncology appointment on Monday. He likes going there because their waiting room is SO cool. Appointments there are often very long, so they have a massive waiting room with a craft station, all sorts of themed play areas, video games, etc. He felt so yucky that once he saw the nurse, he asked if he could just get into bed (they have some rooms similar to hospital rooms where patients can rest/sleep while getting a transfusion, chemo, etc.). We got him into a room with a bed and he just dozed on and off while watching Lady and the Tramp.

His labs, which had been SO good a week ago, were bad again. His liver enzymes, which indicate liver cell death, were up. His platelets, white count, and hemoglobin were down - in fact, his hemoglobin dropped an entire point. I really honestly could have thrown up when I saw his liver numbers back up. We'll be repeating everything on the 12th and going back if the numbers aren't better. If they are better, we'll go back at the end of the month. If the numbers continue to get worse, we won't be able to avoid looking at a bone marrow biopsy.

We were all concerned about how poorly he looked and felt, but his iron numbers were high, so an iron infusion wouldn't have helped him. If his iron were low, an iron infusion could have brought his hemoglobin up and perked him up, but in this case there was nothing to be done. Even a transfusion could have overloaded him on iron, but if his hemoglobin drops further we'll have to transfuse him.

The hardest part of the day was telling the doctor that we'd put Noah into hospice. She very kindly and gently affirmed our decision and told me that this was a very good idea and that this was a very appropriate time for hospice. I wanted to scream and kick. I wanted her to tell me that it was a bad, crazy idea and that there was absolutely no way that Noah was sick enough for hospice. On the other hand, it would have been very hard NOT to have her support, and I was thankful for it. It's just that there is a rational, thoughtful Kate warring with a very emotional, irrational Kate right now. Fortunately I did NOT scream or kick but instead stood there managing to smile and be polite and not cry.

When I got home, I found out that our beloved, amazing nurse Tempie will no longer be able to be Noah's nurse under hospice. She's been his only home nurse since he was an infant, and she's much more like an aunt than just a nurse. I don't know that Noah would still be with us if it weren't for her, and losing her was an incredibly emotional, crushing blow. His new hospice nurse is very sweet and kind and seems very competent, and he already likes her a lot, but it's hard to replace the intimate knowledge that comes from caring for someone for more than 4 years.

The level of support we've gotten from hospice has been nothing short of amazing. We've seen his nurse almost every day since he was admitted. She came today at the same time that the community liason (paperwork guy LOL) came with some paperwork for us to sign. He'd seen some foam dinosaur hats and bought one for each of the children. He and Nurse Leslie came walking in with these hats on just to try to get a smile out of Noah. Noah wasn't feeling up to smiling then, but a little while ago I saw him wearing his hat and growling fiercely at anyone who came too close. That little personal gesture meant a lot to me.

We've seen the chaplain twice and absolutely love him. I didn't think we needed chaplain services because we have such good support from our own church, but this guy is incredible. He's almost 79 and acts about 50. He is wonderful with the children, doing magic tricks with spiritual applications and just overall doing a great job talking to them and relating to them.

The child life specialist came out yesterday and will come out every other week or so. She started off with a bang by bringing supplies for a cool octopus craft for everyone to do. She also started an ongoing memory project for the siblings. I'm not sure what it will be in the end, but when she came she gave each sibling a die cut paper flower and had them put their names/ages on the front and something about Noah on the back. She collected them back up but I forgot to ask her what she was going to do with them. She'll continue to do some things with everyone, some things with just Noah, and some things with just siblings (all together and/or in smaller groups).

On her next visit, she, Jeff, Noah, and I will start helping Noah work through a My Wishes book. You can see one online here (you can click to see a blank one and a completed sample). It's a booklet that will help us talk to Noah about his wishes for this stage of his life, his death, and for after his death (who he wants to have take care of his things, etc.) It's similar to the Five Wishes living will, but written for children. It's not scary and nothing in it says that he WILL die. It's a very safe, comforting way for him to let us know what is important to him so that we can honor his wishes as much as possible.

Starting Tuesday, we'll have a CNA at the house two days a week. She'll be able to give Noah his bath (I forgot to mention that he got an awesome red bath chair this week, so he can take tub baths MUCH more easily while keeping his line MUCH safer), do his laundry, do his vitals, and play with him. This isn't private duty nursing - Jeff and I will still be doing his medical care - but it will give him lots of 1:1 attention while I'm homeschooling and will lighten the load a bit for us.

Overall, it's been an incredibly busy week. I had no idea that hospice would be SO involved or that we'd be seeing so many people so often. It's a good thing in almost every way, but it was also challenging emotionally because it kept such a focus on "Noah is in hopsice now." I wasn't really prepared for how emotional I would get at certain things, like the sweet support from Noah's hem/onc doctor. I REALLY wasn't prepared for his labs to get so bad again so quickly - having them look better for that one week sort of let me snuggle down in denial and think that he was doing better. All in all it seems like we are doing well, though. The grief is real but not overwhelming. We're all hurting and sad and a little scared (seeing Noah in so much pain all week definitely didn't help), but we're also managing to function and even laugh at times. God's grace has been very, very real.

We're having homemade pizza and homemade chocolate/peanut butter cup milkshakes for dinner while we play games with the children tonight, and I'm looking forward to some fun family time! We have a big work day planned for tomorrow to get caught up on some long-standing household projects, then plan to enjoy the rest of the weekend. We're having some of our dearest friends over for the afternoon/evening on Sunday, and having a family from church over for dinner on Monday. I really love to cook and entertain, and we all love fellowshipping with other families, so this promises to be a great weekend with lots of laughter and life.

Blessings,
Kate