This hasn’t been the day I expected. You come home from the hospital and you think life is going to be looking up…and on the ride home in the back of an ambulance it did feel like that. Man, it did feel good to come home and step out of that ambulance into the warm sunshine, standing on soft green grass under my feet. I had forgotten what outdoors felt like. The most outdoors I had experienced was a concrete sidewalk trek back and forth between the RMH and the hospital for several weeks. Oh, and a nice stroll with Harp and the nurse one day where we at least poked ourselves outside under the ER drive through on a rainy Sunday. It doesn’t sound like much, but just feeling a bit of a cool breeze across us reminded me that life was still good outside of the hospital walls. That’s why coming home felt like it was going to be so good, and why today hit like a brick in the chest when reality told us home isn’t going to be what we expected. I’ll be honest (as I’ve always tried to be), I’ve pretty much just cried the whole day. It was to the point I stopped trying to hide it from the in-home nurse who was with us for the first time. Bless her heart, she didn’t know what she was getting into! I walked into Harp’s room this morning, our office that we quickly had to convert into a new baby room, and just had the life sucked out of me. You expect a hospital room to look like a hospital room. It’s not so bad there, because it’s temporary. You don’t expect your home to look like a hospital room, because that’s permanent. She was hooked up to all these machines and trapped there in the crib and it just crushed my soul. There won’t be a point where she goes anywhere without equipment hooked to her and a bag of gear with her. That’s going to therapy or just going to the living room. What kind of quality of life is that? Jami and I have been running on exhaustion and adrenaline for weeks now. Someone asked us Monday how we were doing and we basically said that’s the mode we’ve been in and that’s how we’ve kept it together. But now we were through all of that and it’s washing over us like a tidal wave. I just felt sick, like I was going to throw up. We had some hard conversations and we asked each other if we thought we could do this? My reply the whole time has been yes, we can find our way through anything. But today just felt like defeat. Today we used all we had to pull ourselves together to try and get things done that needed to be done. All these machines and supplies to organize and medicines to figure out and nurses to learn and work with and paperwork to sort out and suppliers to meet with…it was a day of just bearing down and pushing forward. There were a few moments where I felt a breath go in without a huge weight on my chest. She did really good on her HME for a while (a small canister on the trach to allow her to be more mobile and keep moisture in). She sounded great for a few minutes on the couch today with no crackling and coughing. I saw her smile a few times today. Those moments are nice, but right now I’m hearing the pulse ox meter alarming in there over and over and hear the suction machine running trying to clear her out. We’ve got a nurse here now that we met all of an hour ago that will be with Harp for the night. In home nursing is great and will help us a lot, but it’s so hard to learn Harper with all her issues, especially secretion issues, without having a fair bit of time around her. Hopefully with time we grow to that point, but it will take a bit. Hopefully with time I can wake up in the morning without the first thought being is this really happening or was it just a bad dream? Today was one of those days. Today hurt like it did when she was born and I would wake up thinking please let that have just been a dream. I never want to have a callous so thick that Harper’s life doesn’t impact me more than the everyday world around me, but right now I need healing so it’s not just a completely fresh open wound.
I guess, obviously, you know that we have made it home. We were so thankful for that staff at the hospital for everything they put into Harper while we were there. Such a great group of people that kept us going and made life a lot more manageable while we were absorb everything coming at us. From our favorite custodial lady (who is on vacation in Jamaica now!) to the doctors that called the shots, they were great to be around. We are still tankful for those standout people who helped us through our time in the NICU at that hospital and we will look back at this PICU group the same way years down the road. That’s part of the hard thing in coming home. Now you’re expected to do everything on your own, and just because we have the ability to do it all on our own doesn’t mean we don’t sorely miss that support system. Now, we did pick up some support people who have followed us home. Most interestingly is Hospice. Yes, most people freeze when they hear the name. For us, for children, there is a support network provided by hospice that is for kids with large disabilities, not necessarily on a 6 month end of life plan. So, let’s just make that clear, Harp is not looking at a dark timeline! They work to support us in all kinds of ways like medical supplies (they handle it and bring it to us which is great compared to our normal routine of calling and picking up from multiple groups), on-call nurses and Dr support, house visit support, acquiring medicines, counseling support, and other ways that we just never knew existed. They have really worked to help get everything organized and together for us before we ever got home and continued to help us even after we are here. Medical supplies. Good land. Speaking of land, I need that Heather Land lady to do a piece about ordering home medical supplies. What a mess. Stuff everywhere! I’ll post a picture once we somewhat get the place organized and stuff sent back where we had two and three of the same machines and supplies because they were coming from so many places. Whew.
OK, lastly is just a bit of background since we get this question a lot. What is secretions? It’s basically saliva, slobber, mucus, etc. Harper produces it at an abnormal rate, not by a little bit, but by a truck ton. One of the doctors in rounds one day said she has a lot lot lot lot of secretions, and the RRT who had been suctioning all morning added in a few more ‘lots’ to that. She isn’t able to manage them (swallow them) so they end up going down her airway. Normally you and I would cough them up and out. She could cough them up to about the back of the throat, but couldn’t get it all the way out of her mouth. This led to a continuous cough for hours on end. Her cough would weaken (think about how much your throat hurts from coughing and your ribs hurt from that contracting over time) until she wasn’t moving it up at all, and then she would aspirate. Between the respiratory virus she had the pneumonia from aspirations she was just overloaded in her lungs. That’s where the trach comes in. She can cough it up to the back of the throat and we can suction it out straight from there. Or a lot of times she coughs it straight out of the tube. This helps keep her from aspirating and creating all these respiratory issues. Now our hope is to reduce the amount of secretions to further help clear her up. Part of the issue that complicates her already bad secretions is putting a tube in your throat. If you get something in your nose, the nose makes snot to try and push it out. When you put a hole in the stomach, like a G-tube, it produces a mucus like ooze that flows outward trying to clear or clean out that site, which is why we clean it regularly. The throat is the same way. A new hole and something stuck down inside it causes irritations and it produces more saliva as a natural reaction trying to get out the foreign body. We hope with time her body becomes more accustomed to it and stops trying to fight it. If that happens, it will be wonderful. We are also on more medications trying to reduce the overall production, but it’s a delicate line to walk. If you reduce them or make them too thick, then they can plug the trach, which is the most dangerous scenario to avoid. During the training they show you a picture of a trach that has a plug. It’s an actual one that was removed from a child who died because of the plug. It’s harsh, but it’s to drive home the point that 1) you have to stay diligent on your trach care to make sure you avoid them as much as possible and 2) if it happens you know to get the trach out and replace it. If they had only pulled it out and put a backup trach in the child would have been OK. That’s a steep lesson to learn the hard way. We had to go through a lot of training over the past week and be signed off in a book for each task that we completed, multiple times, to make sure we knew what to do in different scenarios. Between that and changing out the real thing 4 times a piece, we felt pretty good we understood what we needed to do to keep her safe. I’m so proud of Jami through all of this. She went from not ever changing a G- tube button to being the first one to complete her 4 trach changes, without my help at all! I wasn’t even there for her first few changes, which goes to show you just how good those nurses and RRTs were that helped teach and walk her through the process. She has been a true champion through all of this. Give her a high five next time you see her.
-I don’t know what we need, but something to fill us back up. Something to bring back peace and hope for her future to be full of joy. Not for us, but for her to have joy and experience life without hurting.
-Work. We go back to work full time this week and there is so much to get caught up on. It feels daunting. We are so thankful for our jobs and the flexibility our bosses give us to take care of family, but that doesn’t mean we don’t want to do the best at our jobs. Not being there so long means we haven’t been doing everything we wanted to do and now we are playing major catchup because we want to do the very best we can.
-In home nursing. This is very new to us but will be a very big blessing in the long run. We will have a nurse from 7am to 7pm each day which means we won’t have to go to daycare and run that risk of catching anything. That, and nobody is going to want to keep a baby with this many issues now. We just hope we have really good ones that work out and don’t have to cycle through several to find one that fits best.
-Just praise God for all the great people in our lives. Family who’s helped take care of the other kids, friends who have talked to us and helped us in the craziest of ways, the hospital staff who has done so much to walk us through all of this, all of you who follow here and pray for us and encourage us…everyone needs a big round of applause and hugs and high-fives. We would have never made it if it weren’t for everyone. I know we don’t say it enough, but we really do appreciate all of it.