The older I get, the more I realize that life is short and time is fleeting. Later this month, I will enter the last year of my 20's. Ordinarily this wouldn't be a big deal, and it largely still isn't. There were days that I thought people that were 30 or older were ancient. Needless to say, after working 13 years in long term care I have changed that perspective quite dramatically. I've learned that getting older is a blessing that not everyone is given. In the 29 years I've been on this earth, I have experienced more than most people do in a lifetime. Tons of hardships, lots of long and sleepless nights, and days that I thought I could burst from joy. After all, I've met and married the love of my life, had three amazing little girls, and been able to have a lot of fun.
Truth be told, it's hard sometimes to think about how many years I've experienced and how few Millie was able to be here. It's odd that something like my birthday could trigger these feelings, but I've found that most everything can anymore. Grief is messy and does not always make sense. Just when I think I'm at a place where I've had some much-needed peace, another wave hits. Something else makes that punch in the gut come back. This will be the fourth birthday I have celebrated without Millie. Her fourth birthday is coming in just a couple of months. I can scarcely believe that she will be four. Then again, Lydia will be three later this month and that doesn't seem possible either.
I'll warn you, this post may be just a little all over the place.
Things with Nora the past couple of months have been a little challenging. Obviously there's the event that occurred before my last post, which I retold in detail here. She has been sick a couple of other times since then, and something really bizarre happened last week.
It started out as a rash that looked like bruising on her right arm. Then it happened in her left arm. Then it spread to both of her legs. Along with the rash came swelling. And I'm not talking about just a little extra fluid. Nora has some chunky little legs, but this was even more so than before. It was very distressing. Not only because there really didn't seem to be any sort of explanation, but also because when Amelia started the dying process, swelling was one of the first things that started to become apparent. Any time Nora has swelling, my PTSD is triggered. I recall in particular seeing Nora after her surgeries. She was very swollen due to all of the trauma to her body. Her face and tummy in particular were quite swollen. In addition to the trach and g-tube, Nora also had a tongue tie which was released during her surgery. That is most likely what caused the facial swelling. This time, I knew something wasn't right but we didn't have anything to go on.
We took her into the local ER, who diagnosed her with Ezcema and Cellulitis. Which were both completely false. I have Ezcema and what we were seeing was definitely not that. Cellulitis is also usually localized to one area of the body. The rash almost looked like a vascular problem to me. They discharged us with antibiotics for the suspected Cellulitis, which I now feel like was their effort to get the crazy mom with a sick kid to shut up. To be fair to them, Nora is extremely complex and this was by far one of the most bizarre conditions I've ever seen. The antibiotics didn't help much at all, and she spiked a fever the next morning. After deliberating about it for quite a while, we decided to take her to the ER in Sioux Falls, where her specialists and PICU team are. They decided they would run some more tests, all of which came back mostly normal with a couple of things slightly off but nothing major. The ER doctor called the Intensivist that was in the PICU and after seeing the rash and swelling he recommended they consult with Infectious Disease. ID wanted Nora admitted overnight for close observation so that they could better evaluate things in the morning. We had been in the ER for over five hours, and we were all getting tired. Lydia and Justin headed back home. We prefer to be together during hospital stays as much as possible but with cold and flu season being at its peak and lots of sick kids in the PICU, we decided it would be best for Lydia to stay home.
I was thankfully able to get in to the Ronald McDonald House and get some rest. Sleep is pretty elusive when Nora is not doing well. The next morning ID saw Nora and said that they did not believe what she had going on was an infectious process. The Intensivist on duty decided it would be a good idea to have Dermatology see her. I didn't disagree with that, but they wanted to do something that made me feel sick. They wanted to do skin biopsies to see if they could figure out what was causing the Vasculitis. When the Dermatologist came, she explained to me what they were going to do and why. I agreed and they were able to do the procedure at bedside. It wasn't the easiest thing to watch as a mama, but I'm no stranger to watching my kiddos have procedures done. Nora did run a fever that morning, but she was otherwise looking very stable. The PICU team was agreeable to sending us home as long as everything went well with the biopsies, which it did.
Last week results started to come in. Nothing really made any sense, and one by one the tests came back with no explanation. One of the biopsies did show something called HSP or Henoch-Schonlein Pupura. It is a rare type of Vasculitis. The only thing I can think of that may have triggered it is that she received her MMR vaccine about a week before this all started. Sometimes our bodies have an exaggerated immune response, and that seems to be what caused all of this. Having an answer was helpful, but it also left a question mark: How do we treat this? The Dermatologist said that traditionally a course of steroids helps to calm the inflammation. We did opt to try this, because things weren't appearing to clear up on their own. She has been on the steroid since Monday. They want her to take it for 15 days. Steroids of course mean that she's more irritable than her normal and even more compromised immunity wise than before. However, since starting the steroid I have noticed improvements.
Other than that, things are going OK here. There are a few very exciting things coming up, and I am really looking forward to the nicer weather that will come before long. The blessing of it being February is knowing that Spring is just around the corner. I am ready for nicer weather and the ability to be outside again. I'm sure I will complain plenty about the heat of the summer and let's not forget the bugs, but every season has its challenges.
Hopefully I will get a moment to write again soon. This post actually took a week for me to finish. I hope you are all staying safe and warm!
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