March 12, 2020
So I am going to write this one as me (Nate).
I am not going to lie, it has been a really rough couple of days. Dating back to Tuesday’s post Olly was having increased breathing issues and pain. She had an x-ray and ultrasound that showed a bowel obstruction.
Treatment started that night that included stopping her feeds, and an enema. Both seemed to help but didn’t completely relieve the problem. Olly was also given a Tylenol to help with the discomfort.
Wednesday brought 2 more enemas, more Tylenol and the discomfort turned to pain. She was given morphine to help with the pain to help her relax and get some sleep.
That brings us to today. Olly was ever so lucky to get her fourth enema in less than 48 hours. With the hopes to clear out the blockage and relieve the pain. Following the last enema Olly had another X-ray, good news no blockage.
Bad news is she’s in a lot of pain still, so we doubled her morphine. Will use other drugs if needed. Right now the doctors don’t know what to do or try researching options. They think it’s Tay-Sachs related and that her bowels may be starting to fail.
We will have another Care Conference tomorrow to determine what steps might come next. We will be meeting with General Peds, our neurologist, and G/I. The hope is that we can come up with a plan for the weekend and possibly into the next week. I think for the first in this process I was truly scared today. I have been heartbroken, disappointed and even pissed but I don’t think I have ever been scared in the process at least not like I was earlier today. I know I have talked about them a lot but they again today were there when we needed them. Our nurses and when I say our nurses I mean all of the nurses and nursing assistants on Unit 6, I think we have gotten to know on some level most of them are truly amazing. They all do such a great job checking in and making sure not only Olly is good but Lora and I as well. They are truly part of our ever growing family.
As I am sure you are all aware COVID-19 has turned the World Upside Down. Well it had caught up to us. Before you panic none of us have it. M Health has instituted new visitors policies. We now have a list of two that can see Olly, Lora and myself. I know you are thinking that isn’t horrible but it gets worse. Only one of us is allowed on the floor at a time. So that means most of the time that Lora and I see eachother it will be for a quick minute in the lobby and we swap out.
Lots of things on our plates and this just adds a completely new layer to everything that is going on. Thank God for cell phones and FaceTime.
We aren’t ready to give up hope- please pray for the doctors, nurse, Olly’s comfort, and that any trial and error approach taken would work!
Been praying this one a lot the last couple days. “This is my command - be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9
Seriously thank you to everyone that has reached out, offered meals or to come sit with Olly, help with Mara, clean our house, take care of the dogs, put packages in our garage, and pray for us. I can’t express how thankful we are. You give me hope when I am down. You help me help me continue to fight everyday for Olly, Mara, Lora and myself.