As I was thinking back trying to remember what helped me or what was nice to have at the hospital, I couldn't stop the tears from filling my eyes because although I have NO idea what this poor family is about to endure, I've seen enough to know that it will be a hard fight and they will never be the same. Memories of each of Raya's hospital stays have been flooding my mind and I'm realizing that there are still some things that I'm not completely "over" that will take time. I learned a LOT, both good and bad, from each hospital stay.
The first one was overwhelming, exhausting, scary, and I just felt like I was in a whole other world. I was trying to soak in all the new medical terminology I was hearing and remember everything that the doctors & nurses were teaching me about tube feeding and what might possibly have been wrong with my 2 month old baby, and I was doing it on very little sleep. On the bright side, I felt a huge relief just knowing that we were working towards finding out what was wrong with Raya and how to help her feel better & start growing. Even though a feeding tube can be a real beast in a lot of ways, that little yellow tube in her nose was like a big soft security blanket to me because I KNEW that no matter what, I could get her medicine and formula into her. (KEEPING it in was another story. :)
Her third stay was because of bleeding in her stomach, an increase in her vomiting, just an overall decline in her condition. Once again, the doctor had said she just wanted Raya to have gut rest for 24 hours on IV fluids and get a GJ tube placed, and once again we ended up being there longer. After 4 days, her doctor was talking discharge the next day but then things took a turn for the worse and we were there for 15 days.
The low points of that hospital stay are some of the lowest points of my life as a parent. At times, I literally felt like a prisoner with no idea how long the sentence would be. Dramatic, perhaps, but when you've been living in a 3 foot by 6 foot space and eating cafeteria food for days on end where you never get more than an hour or two of sleep without being interrupted by some machine beeping, EVERYTHING is dramatic! :)
I've mentioned before that we have always felt blessed that Raya has never been in an imminently life-threatening condition before, but during the 2 week hospital stay there were times where we doubted that the GJ tube was going to work for her. If the GJ had failed, the only thing left to try would have been TPN (IV nutrition), which is very invasive, complicated, and carries a lot more risks long term. Luckily, it never came to that.
There were times when we just plain had no idea how long we'd be there and it didn't look like we were leaving anytime soon. This was also the time when I lost all remaining naivety about infectious disease and hospital-bourne illnesses and became a complete and total germophobe. Let it be known that hand sanitizer does not kill ALL germs/bacteria/spores/etc. Again, not to be dramatic, but as soon as they told me that her test for c. diff came back positive, a switch flipped in me and I will never be the same. I suddenly couldn't look at any surface in our hospital room without imagining squirming bacteria crawling all over it (you know, like in the Lysol commercials) and it has taken me a long time to let go of some of that. Even though I knew that it had nothing to do with Raya getting c. diff, I was furious at the people that I had seen break protocols for working with the non-contact patient that had been put in Raya's room in the middle of the night (which I was also furious about) and frustrated that there was absolutely nothing I could do to take back what someone had done that passed c. diff to her.
During that hospital stay, I finally started to get over my feelings of responsibility to make everyone's jobs easier and be nice to everybody and I learned that sometimes in order to get the attention that is needed and deserved, it is completely OKAY to be the squeaky wheel, especially when your child's health is on the line. I do believe that most medical professionals have their patients' best interest at heart, but ultimately they have a lot of patients to attend to and nobody is as invested in my child's health as I am.
On a lighter note, I also finally realized that when the doctors & nurses aren't spending much time in your room anymore, that's a GOOD thing. :)
It was exhausting because of the 2 hour time difference, being there alone with Raya, and keeping her happy in a hospital, which by then she was smart enough to understand and hate. :) On the other hand, since there were very few unknowns except for what the test outcomes would be, I was much more relaxed and not nearly as stressed. (that could have had something to do with sleeping at the Ronald McDonald House instead of the hospital couch though. :) I left Ohio feeling relieved that it was over but disappointed that we didn't get any concrete answers or specific direction to go in. That was when it finally started to sink in that sometimes there are just no cut and dry answers and some things that you would like to be black and white will never be anything but a hundred shades of gray.
In other words, we're no longer in crisis mode doing damage control, we've settled into a routine, and we're used to life as we know it. We're used to it and dare I say that we're comfortable with it. Nobody is immune to challenges and all that could change in the blink of an eye, but rehashing some of the things that have happened in the last 2 years in light of hearing about this family who is facing leukemia has really reminded me how good things are now and I am SO thankful to be where we are now and so far ahead of where we were a year ago.