Always Something

Sometimes I can't believe how silly it is to think we are in control. This past week has not been easy. And when I think about how different I view an "easy life" now from even 2 weeks ago, we had it easy.

What we were doing late Monday afternoon

For anyone who doesn't follow Nora on facebook, she had a 100.7 fever on Monday evening. For most kids, that wouldn't be very alarming. Maybe mom or dad would give them a quick shot of Tylenol and keep an eye on them the rest of the night. For Nora, that means calling Children's Hospital to speak with the hematology/oncology doctor on call. When that doctor says to come in, you change into the most comfortable clothes you can find, throw some snacks and formula into a diaper bag, and drive straight to the emergency room. You don't pass go and you certainly don't collect a dime.

    

Monday night was not easy. Adam stayed home with Heidi, who was already in bed. I drove Nora to Lawrenceville. We sat in the lactation room alone for 20 minutes, and then were led back to a triage area. It happened to be the same exact room Adam and I, carrying a 4 month old Nora, were escorted to on February 23rd, when our lives literally stopped and our hearts broke in ways I can only hope to forget some day. The very same room. Out of maybe 30 rooms. What are the odds? Sounds about right for us.

After about 30 minutes, nana showed up to keep us company and to keep my thoughts and fears from running down my cheeks. They gave her 2 antibiotic drips through her broviac lumen, drew blood for a culture, and around 3am, we were all heading home. (Thank you again, nana).

Looking back now, going to work on Tuesday was not my best parenting decision. I am still trying to stop beating myself up about it. But after getting her home after work, her temperature was 103 degrees. I called the ER to let them know we were coming. As I was loading Nora into the car in our driveway, Children's was calling me. It was the blood lab, letting me know that her culture was positive and to bring her in. 

(Way ahead of you guys).

I got this, dad.

This time, nana met us in the lactation room. She sat with us for a few hours, until Adam could finish the enormous project he started in the backyard and drop Heidi off at grandma and pappy's house. (Thank you grandma and pappy for always taking our girl in at the drop of a hat. She is so very lucky to have you both and it is such a relief to know she is in such great hands when we have no choice but to focus on Nora). Our girl had another 2 doses of antibiotics and another blood draw for a culture. She was also very much NOT herself. To say that I was scared that night would be an understatement.

So, around 11:30pm, we got a room in 9B. Sadly, 9B is becoming a place of comfort. We are getting to know the staff pretty well, and we always know she is getting the best care. A resident rounding the floor stopped in and gave us some very scary, but very possible scenarios. Because they weren't sure exactly what type of bacteria we were dealing with yet, or how resistant it would be to antibiotics, there was a very real possibility that we would be admitted for weeks (actually 6 weeks was thrown out there). Adam and I asked a ton of questions through our foggy eyes, gave Nora a bottle, and put her to sleep. Then we cried. Together. We reminded each other of how unbelievably strong she is. We smiled when we saw that Heidi's favorite movie, Mulan, was left on the gaming console (yes, every room comes with a xbox) and how that was somehow comforting. Like she was here with us. After 6 months, 8 stays, 7 rounds, 34 sleeps- it is never easy to go to bed without our Heidi Lynn.

Don't mind the reflection of hospital monitors. Our view of the city...and its fireworks!

So, to skip the boring details of hospital days, fast forward to Friday, when we had lots of answers. Nora could go home over the weekend with lots and lots of baggage. Home. It seemed too good to be true. Mostly because now that we are home, part of me wishes we were still in the hospital. There is a LOT of stuff to remember. Once again, I realize how incredibly easy we had it before. 

having a lunch date with Miss Heidi in the cafeteria

3 hour-long doses of vancomycin per day. We hook it up to her shiny new pump, and set our alarm for 60 minutes. When the pump is empty, we either flush her line with saline and heparin, or (once/day) do a vanco lock. That is a very concentrated, very small dose of vancomycin that is put into her line to stay there, and not enter her bloodstream. It sits in there for 8 hours. When she is ready for her next dose of vanco, we have to pull out the old dose from the line. Because that means we are inevitably pulling blood out through the cap on the end of her line, we then have to change the cap. (Keep in mind that the cap is the only barrier between a main artery and the atmosphere.) That might sound dramatic, but it is the truth. I have watched nurses change her cap literally 100 times, never once envisioning that I would be responsible for that. I have an art degree. I cry at their vaccinations. August 22nd cannot come soon enough. Hopefully, that is the day this part of Nora's brand new nightmare is over.

To someone in the medical field, this may not be terrifying, but to a steamfitter and an admissions counselor, this is truly overwhelming. To me, being a parent has always meant picking up socks and vomit. Wiping faces, noses and bums. It now means flushing ports and giving injections. It means a refrigerator with yogurt and apple juice next to neupogen and vancomycin. It means facing your very worst fears, through next to no sleep, at ungodly hours while you are shaking, hoping you are doing everything right. Because if there ever was a little girl who deserved the very best care in the world, it is our Nora Melita.

Thank you to everyone for all of the prayers. The texts, calls, messages and visits. The support makes weeks like last week bearable. It gives us the strength to push forward and reminds us that we are not alone. We are, as always, forever grateful.

Hard to see, but the left side says NORA and the right side says BASIL

On another note, our dear friend, Basil had his stem cell transplant this week. We were fortunate enough to meet his parents (finally!). Two lovely people who have the kind of strength you read about, but seldom see in real life. Please keep them all in your thoughts and prayers as he continues his courageous fight. They will likely be the hospital for a few more weeks. To read more about the little guy who inspires us everyday, check out his facebook page:

Basil's Battle

or just search Basil's Battle when you're logged in next time.

Always a good reminder: