Things in our house have been a little tense. We had a nice stint of Nora not being in the hospital and not having an ER visits. It was pretty nice. Justin and I were also able to get out and take a small trip for our anniversary, which was in April. Sometimes it's crazy to think that we have been married for that long and others it feels like we've been married a lot longer.
Anyway, last weekend Nora started to run some low grade fevers, which always puts me on high alert. Low grade fevers usually (but not always) mean that she has something brewing. Turns out I was right. On Monday, Nora started to get sick very quickly. Her oxygen saturations dropped, so we took her to the ER. They diagnosed her with pneumonia. She was given a steroid and put on an antibiotic. We came home. Once Nora started to get into a deep sleep, her oxygen saturations began to drop. We started her on oxygen bled in through her ventilator. That seemed to keep her stable over the night.
Yesterday, she was not only on oxygen but looking pale and dusky in color. I made a call to pulmonology who again suggested that she be evaluated in the ER. The doctor we had that day decided he did not think she had pneumonia but rather a respiratory virus. It's an understatement to say that one doctor telling you one thing and another something else entirely is frustrating. I was given the choice to continue battling things out at home or to have her sent back to the Castle. Neither choice really seemed preferable. It felt like no matter what I did it would be wrong. Something told me that we were able to battle it at home. Thankfully, it seems like I was correct in my assessment as Nora appears to be turning the corner. I have her weaned off of the oxygen now. As the night progresses, she may need it while she sleeps but time will tell.
Meanwhile, Justin and I are fried. We are both completely burned out. We don't have time for ourselves or for each other, which makes it difficult to care for our daughters without being frustrated and at times, short tempered. So far we are making things work and doing our best to just fight it because we are hoping that when the weather gets better, Nora's health will be more stable which means we may have the opportunity to have more date nights and the ability to get out of the house or do something for ourselves once in a while.
My own health has been problematic. I have been exhausted and dealing with a lot of symptoms that haven't really been responding to treatment. I have started seeing a GI doctor which I needed to do long ago. He seems to be very knowledgeable and has ordered some testing. Two of the three tests he recommended have been completed. He also suggested some lab work which I need to get done sooner than later but thankfully that is not as invasive as some of the other things he wants to do. Only one of the tests has really led us anywhere closer to an idea of what is going on, but there is hope and I am holding on to it.
Physically I have not been well and emotionally I have been in a dark place as well. April to July are always notoriously difficult for obvious reasons, and this weekend is the anniversary of when we started the journey to diagnosis with Amelia. As I'm sure most of you can imagine, there are a lot of things that come back and lot of feelings. It's hard to believe that our Millie will have been gone three years in just a short time. My goal is to have some time to get back to reading, and working out and hopefully eating more healthily. I have really let things slip and I can't afford to do that.
As always, I appreciate all of the love, support, thoughts, and prayers being sent our way. I ask specifically that people are praying about a very sensitive and private situation we have recently found ourselves in. There are a lot of hurt feelings and it will take time to work through all of them.
I hope to be better about updating. I always say that but I'm afraid I'm not good at it lately.
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