the long update, for real!

Saturday, March 28, morning
Get comfortable, this is going to be a long one!
We are settled in our new private room (room 42). No bathtub, but it's nice and big, with a large bathroom. I love that there are showers in the bathrooms, no more having to walk down the hall in my pajamas with crazy morning hair.
We met Erin (Blaise's mom) briefly the other day. I also met Dr. Duggan, Dr. Jaksic, Dr. Jennings, the central line lady, the CAIR nutrition lady, the OT, our case manager, and I'm sure others I'm forgetting. I am awful with names. I have a ton of business cards from everyone, not that I can match the card up to the person in most cases... Oh, and a couple of the surgery fellows came by the other night, one of whom knows Dr. Potter (lucky him!).
Faith had an upper GI/small bowel follow-through Thursday afternoon as the first diagnostic test to try and figure out what exactly is going on with her motility. Dr. Duggan also suggested a possible endoscopy, and maybe some small bowel manometry testing, where they'll put a manometry catheter in through her g-tube and it will tell them more about how her intestines actually work. I really hope we will be able to get to the bottom of things and really find out what's going on, and what needs to be done to get her gut working and get her eating like normal. Dr. Duggan and Dr. Puder are also talking more about trying Cisapride. They'd want to wait a bit, because the Omegaven is investigational, and they don't like to do two investigational drugs at once without knowing the first one isn't going to cause any issues, and then once we decide if we want to do it, they have to petition the FDA (Dr. Duggan said it's like a 15-page consent form!) and that takes a couple of weeks to a month. I need to read more about it and decide what I think, but I think it might be worth a try...
So. More details about the events of the past week...
Last Thursday Jan and I spent awhile on the phone with Coram (our homecare TPN company) trying to make it clear to them why Faith needed her TPN and pumps delivered to the hospital that night, instead of delivering it to our house the next day. To clarify- Faith is on TPN 20 hours a day. At that time, we hung her new bag at 10PM, and she came off at 6 PM. So, if they wouldn't have delivered it on Thursday, we would have had to stay at the hospital unitl 6 PM on Friday, when she would be disconnected from the hospital's TPN and pumps, and then we would've had to get home and get her new TPN made and hung to start at 10. Not ok, since we wanted out that morning.
So they delivered it Thursday night. I wish someone would've taken my picture when I opened that box, I'm sure the look on my face was priceless. Talk about overwhelmed... it made me completely question whether I could do any of it, and had me thinking a medical transport to Boston probably would have been a better choice. Not to mention the nurses at the hospital aren't familiar with homecare stuff, so Maree really didn't know anything about mixing the TPN or putting the tubing together, and no one came to the hospital to teach me any of it. So, we had to guess. I can cook and read a recipe, so I figured out the TPN mixing easily enough. When it came to the tubing, that was another story. They sent a little diagram of how it was supposed to look, but when we tried to go by that, we realized we were missing pieces. So Maree had to get some substitute pieces from the hospital's stuff and we had to figure out how to put it together our own way. It was interesting... but it worked.
Friday morning Faith had her carseat test, and Jan helped us get the last few things figured out. Finally around 10:30, everything was done, and we were ready to leave! Dave took one last wagon-load down (I think all together, we had 4 wagon-loads and one big suitcase of stuff that we'd accumulated there during our 4 month stay...) and tried to get it crammed into the car. We ended up having to leave one cooler of breastmilk at the hospital for him to pick up Monday night after dropping us at the airport, because there was just no way we could have fit it.
Our nurses were so fabulous, I miss all of them already (and so does Faith!). I made sure we got pictures of Faith with everyone, we only missed one nurse, Becky, because we got out on Friday and not Saturday. We will have to go back and visit some weekend though so we can get Faith's picture with her. Our primary team got us a great basket full of goodies and my favorite flowers (I don't think they knew they were my favorite flowers, but it was cool anyway!). If all of you nurses are reading this- don't forget to post comments!
Faith didn't think the outside was that great. She doesn't like wind, and she doesn't seem to be a big fan of the sunlight, either. We're going to have to work on that... Then it came to putting her in the car. Yeah, she didn't think that was real fun, either. But she calmed down fairly quickly once we started moving.
I read a lot about taking care of kids with feeding tubes and TPN before we went home. I talked to lots of parents online, asked a bunch of questions, and felt like I had a pretty good handle on it. Our home health nurse came by the house Friday afternoon and went over things with me, showed me the right way to put the tubing for her TPN together (well, as right as it could be, considering the company neglected to send two important pieces), and left saying she thought I had a good handle on everything, too. She was impressed that when she arrived, I was in the process of creating an organization system, separating the different pieces and parts into bags with one day's worth for each step in the TPN process.
Nowhere in there did anyone tell me that when you have a kid on tube feeds and TPN, and a bunch of different meds, you don't get to sleep. I had to prep her TPN, starting at about 9 PM, to be ready to hook her up at 10. She had a med at 10, and then another at midnight. Her feeds lasted 4 hours before I had to fill the bag up again. She had meds at 6 AM and 8 AM. So, if I timed everything right, I could get 4 solid hours of sleep from midnight to 4, then 2 more from 4-6, and 2 more from 6-8. At least, that's how it would be in a perfect world. In reality, I didn't get that much sleep. Her feed bag was empty at 3 instead of 4, then alarmed again at 5, then we had to get up at 6 for meds and a diaper change... I realized that the darn feed pump was alarming when the bag wasn't really empty, because the bag wasn't positioned good enough and it was getting air in the tubing. I now hate that feed pump, and have told our case manager here that I want to switch to the one everyone who's had them had recommended in the first place. The Apria person here is going to be bringing me a Zevex Infinity pump on Monday to trade for our awful Kangaroo.
Sunday we had a baby dedication and prayer for healing at church. Unfortunately I don't have any pictures to post, until the people who took them email them to me! Faith was beautiful in her dress and bonnet, though.
Monday I ran around like a chicken with its head cut off, just positive that I was going to forget something important and feeling like I wasn't even slightly ready for our trip. It all worked out though, and we actually got to the airport before the check-in counter was even open to get Dave's gate pass. The TSA agent was waiting for us at the counter, and practically held our hands through security. The whole process was very smooth and easy. I had so much stuff along! I took a huge rolling duffel that I checked, a rolling cooler full of frozen breast milk and extra TPN, a rolling computer/carry-on bag, her carseat (in a rolling bag), a stroller (worked well to carry everything!), my breast pump, a big fabric bag that had Faith's diaper bag and a bunch of other stuff in it, and my pillow with a couple of Faith's favorite things and her blanket in it. And Faith and her pumps/bags, of course. I wore her in a wrap.
When our flight got in on Tuesday, Heather, our ride to the hospital, was waiting for us. Fitting everything into her car was an adventure, but we got it all, and then she gave me a mini-tour on the way to the hospital.
We got to the hospital around 7 AM, but couldn't be admitted until noon. The lady at the info desk let me put a bunch of our extra stuff behind the desk, and told me how to get to the cafeteria to get some breakfast. I was so tired, when I sat down all I wanted to do was go to sleep. I needed to pump, so I went back to the info desk to ask if there was a place I could go to pump. The lady took me to a pumping room. Then I went back to the cafeteria and called my mom and told her how tired I was and how I really felt like I needed to get some sleep. Faith also needed to be plugged in, since her feeding pump battery was dying. I had found an outlet in the cafeteria, so Faith was plugged in, asleep in the stroller. My mom suggested checking out the Center for Families. They didn't open until 8, so when that time rolled around, I headed up to find it. I asked the lady there if she knew where I could go to sleep until it was time to be admitted, but she said I couldn't use any of their rooms, because I had Faith with me and babies weren't allowed. She suggested going to admissions and seeing if they would admit us early. So, I went down the hall to the admitting office. The lady there was super rude, just saying there was no one in the office to even ask about it, and then walking away. I made my way back to the cafeteria at that point, fighting tears the whole way. I sat back down on a bench, plugged Faith back in, and tried not to completely break down. Then I thought to call Stephanie, the social worker, and ask if she had any suggestions. She didn't answer, so I left a message, and she called back about 5 minutes later. She said they had a room at the Devon Nicole House where I could sleep for a couple of hours. She met us in the lobby, and took us to a shuttle that drove us over. I got to sleep for about an hour and a half, and it felt so good! Faith slept in the stroller the whole time.
Around 11:30, I woke up and got our things together, and walked back to the hospital. I could have had them get a shuttle, but I figured it would be good to walk, that way I'd know how long it takes when we're outpatient and have to go to clinic appointments. We went back up to admissions, did all the paperwork, and then headed up to 10 East to be admitted. The rest of the day is kind of a blur, I was so tired still. I remember Dr. Puder coming in and talking to me, along with his team, and then he said they'd come back the next day so I could get some rest.
Wednesday was another busy day, meeting all of the different doctors and talking about a plan. Everyone seems optimistic, although no one has dared to mention coming entirely off TPN or tube feeds. That will probably be awhile...
Thursday she had her upper GI, and the first thing the tech said was that her tube (that was supposedly in the lower part of her duodenum) was in her stomach. That was good news to me, because that meant we'd been feeding her to her stomach all along, or at least for awhile, since I don't remember when they last did an x-ray in Denver to confirm tube placement... when we had thought she couldn't tolerate feeds to her stomach. Thursday night the tube clogged, and nothing they tried could get it un-clogged.
Friday morning, Dr. Jennings came in and said he thought they could switch her tube out for a real GJ-tube. Then Dr. Puder came in a little while later, and he and I both agreed that if we'd been feeding to her stomach, and she was tolerating it, we should just keep feeding to her stomach, and just pull the Corpak tube out and use her g-tube. The other option he presented was to put an NJ tube down, but like I said, she was eating to her stomach anyway and doing just fine, so we decided not to do that. He told the nurse to have a resident come in and do it. Apparently when he left the room, some controversy erupted about whether the g-tube would even be functional anymore, and what should actually be done, so the next thing I knew, he came back in the room and took it out himself. The nurse hooked up the extension set to Faith's button, and it works just fine. They re-started her feeds at 6 mL's/hr (at that point she'd been NPO for almost a full day), and an hour later bumped her back up to 13 mL's/hr with no problems.
The one thing the upper GI did show was that Faith's reflux is still really bad. They didn't give her any barium by mouth, only through her tube, but they were able to see it reflux up into her esophagus. Unfortunately there's not a whole lot they can do for that, short of a Nissen fundoplication (which I had mentioned before awhile back, it's where they wrap the top of the stomach around the bottom of the esophagus). Dr. Puder does think that getting her motility going with the Cisapride will help though. Overall, it took about 10 hours for the barium to make it through this time, which is about half as long as it took last time, and a lot shorter than the time before that (in the beginning of January, when they did it on Saturday, and she had barium in her stomach still on Wednesday, and they never put barium in her stomach in the first place...).
So, she is gradually improving on her own. The thing is, without the Omegaven to save her liver, she wouldn't have had time to just gradually improve. But Dr. Puder said yesterday that forcing feeds on her doesn't help either, and can cause more problems in the long run. I wish Dr. Sandoval could sit down and learn from Dr. Puder, since he seemed to be the surgeon most open to other ideas in Denver... So many of the things they did in Denver are the old way of doing things, and there is reason to believe that there are much better ways. I wish everyone believed in what Omegaven does, so that no one would have to force feeds in a race against liver damage... All I can do is hope that when they see Faith get better, they might believe it actually works, since then they'd have her and Max as evidence... I'm not holding my breath though. It might be able to make a believer out of Sandoval, but I still doubt Partrick or Soden would believe in it... I heard Soden actually did a presentation about how it doesn't really work...
I heard there was a blizzard in Colorado the other day. Makes me glad I'm not there... winter is not my thing! It is still definitely winter here in Boston. I haven't really gone outside at all since Tuesday. It's not snowing or anything, but it's not nearly as warm here as it had been at home.
I am hoping to venture out tomorrow morning to try to go to church. There is a Vineyard here, the same kind of church we go to at home, and I hear it's not too hard to get to by public transportation. I figure tomorrow will be a good time to try, since then next week when I have Faith with me, I'll already know what I'm doing. I hear there's also a Trader Joe's, and I think it's not that far from Devon Nicole, so that will be nice to get some good groceries.
Anyway, there's the long-awaited long update. I have a bunch of pictures to post, but I'll do them separately because it's easier that way!