10 Floors Up

Well, this is David’s 11th day in the hospital and here I sit. I am thinking that this has been his longest stay to date, and hopefully ever. 

This whole ordeal has been a lesson in patience, prayer and the acceptance that life sometimes gives us things we have no control over. You would think though, that over the years I would have that last one committed to memory. 

It is my hope that tomorrow we are out of here. It will be between storm fronts and will get us out before the temps drop to arctic degrees. He will be going home with a wound vac and a PICC line and he will receive IV meds for 4-6 weeks and the wound vac will stay in place until his wounds are closed and healed (possibly 4-6 weeks also). 

The upside is that David will likely be able to get back to his normal routine and bonus…..he will be getting a hospital bed that will just help life in general. It will definitely help my back with lifting and positioning. And speaking of my back, it is going to be getting more of a workout as Mr. David LOVES the hospital food and has therefore put on about 4-5 pounds since he has been here. Of course he has. 

Our stay here has taught me so many things and allowed me to get a close up view of a lot of things. Since arriving here on Dec. 30th, David’s has been in the ER, surgery, the oncology floor (it was the only place they had beds at the time), MRI (radiology) and finally he was transferred to the neuro/trauma floor when the oncology floor beds were needed by actual cancer patients. 

The transfer from the pediatric unit where we spent all of our hospital stays his entire life before he aged out, to the adult units has been eye opening and to be honest, I was nervous. Everyone in peds knew David. We always saw familiar faces and sometimes the nurses even fought over getting to care for him. No matter how severe the situation, I never worried about his care. I have learned though, that moving to the adult world and hospital units has been a much easier than originally anticipated.

In our stay here, there have only been a couple of situations that left me less than happy, but for the most part, David has had amazing care and awesome staff. My only issues were an aide on the oncology floor that I knew was doing as little as she could to get by and what she was doing was half-assed. Luckily we didn’t even have her a full shift. The other issue was MRI. 

Since we have dealt with radiology here for years, I have always known them to be very quick and on top of things, but getting the MRI that was crucial to get before having surgery was a literal nightmare this time. It took nearly a week, all the while David’s leg had a massive infection. As mom and a frustrated bordering on angry mom at that. I was ready to go have words with the head of radiology myself. Luckily it didn’t come to that, but another day and I would likely have been trespassed from the property. 

In all fairness though, not only did we arrive on a holiday weekend when everyone was short staffed, but Davids was also a complicated case. He had metal and various implantations, that had to be worked around, so it wasn’t just a lack of care or effort on their part, although I do think a couple of things were overlooked which held up the process and prolonged the situation.

This time, because of the new issues (abscesses and infection) we got to experience the wound team who are absolutely amazing and we got up close and personal with the IV team who have been life savers and who will be placing the PICC line. 

David has had such excellent care from the docs, residents, nurses, aides, lab techs, food service and cleaning people. I have been extremely impressed with 99% of everything we have experienced. Most of all, they all seem to really like David and even if they aren’t on his team that shift, they always drop in to say hi. 

Even though this has been a fairly traumatic experience, I have tried hard to hold perspective through it all. I have tried to find the positive in even the most stressful moments and I do my best to always thank those who care for David and be respectful of everything they do. I don’t think these caregivers get the appreciation or respect they deserve and I fully believe that people give their best when they are treated your best.

I have had a lot of time to think up here and appreciate things that in my normal busy life I don’t always take the time to give my full attention to. It has become very clear to me that my grandkids are what keep me motivated and smiling. Being away from them has been tough. They do understand though that David has to currently be my priority and I love them all the more for that.

David in most cases has stayed positive and upbeat, enjoying his tablet and some toys we have up here for him. And as I said, the food here makes him ecstatically happy. He also enjoys anyone who walks in to talk to him, unless of course, they are holding what he perceives to be a needle of any kind.

It has snowed twice while we have been here and since we are on the 10th floor, we have had some exquisitely beautiful snow shows out our huge window. I have even gotten to play with the camera on my phone a bit and took some really pretty pictures of the snow during and after. I actually enjoyed that. 

The days pass quickly up here with lots of people in and out, day and night. Most of the time though, when there is a quiet moment, I just pull into myself and think. Even being a mom of a special child for all these years, there is never a completely comfortable emotional place to secure myself in, and if I try to find one, things like abscesses will pop up out of nowhere and bring me back to the reality that mine and David’s life has always and will always be different than most. There will always be the terrifying moments that come with the territory, but there is also so much joy, laughter and love that scary moments fade away….until the next one comes along.

I know many people love and care about us, but I also feel a great loneliness at times. It is no one’s fault, and sadly it can’t be filled by anyone except the one who isn’t here. Tim and I started this journey together and had he lived, we would still be sharing it together. As David’s other parent, the weight of the scary times as well as the joy of the good times would have been evenly distributed and together we would have understood the depth of emotions that come with all of this. We would have supported not only David but each other thru both the best and the worst. With him gone though, I am alone where David is concerned. Every decision, every crisis, every moment is mine and mine alone to care for him, love him and most of all fight for him. There is just no one else that is his parent. There is no one to hold me up and so I have become very independent and closed off in moments of crisis. I don’t want to do it alone, but I also fight having anyone around. It is a weird place to be in and I have thought a lot about it looking out 10 floors up over the snowy city. 

Hopefully, this speed bump is running its course and soon we will be back home, working our way back to whatever our new normal will be for 2024. 

I hope you all know that I am beyond grateful for anyone who has come up, messaged, called and most of all prayed. Those prayers are huge and seem to be working and I hope to take each of those prayers and pray them forward. 

Perhaps this less than stellar start for the new year has set the stage for something new, something joyful and maybe even something wonderful. I choose to stay on the most positive side of hope possible. 

Until next time….