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Sunday, November 20, 2011

Thankful to be where we are

This evening, I got a text message from a friend asking me what kinds of things were helpful to me when Raya was in the hospital. When I asked her why, she said that her friend's daughter had just been diagnosed with leukemia and was in the hospital and she couldn't think of what to take her. I gave her a few suggestions (snacks, book/magazines, chapstick, shampoo & conditioner, a notebook & pen, etc.) and told her a few things that I wish I had known back at the beginning about being in the hospital with a child.
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. :)
January 2010
 The second one caught me by surprise. I had been told to expect her to be in for 24 hours when she had her G tube placement surgery but after spiking a fever shortly after waking up from anesthesia, having difficulty with pain control, fevers off & on, and not tolerating feeds at all, 24 hours turned into 5 days. It was SLOWWWW. That was the hospitalization that taught me that nurses sometimes need to be reminded to give patients pain meds on time (and as long as it's done nicely, they don't mind being reminded) and that I should never let an overconfident resident screw up my kid's feeding schedule when I know that his plan of care will not work for her. In other words, hospital personnel need parents to be their child's healthcare advocate in order to ensure that all the patient's needs are met and nothing falls through the cracks. This means speaking up when you have a question or when something is bothering you but doing it in a respectful and considerate way, and making a concerted effort to learn how to take care of your child's needs once they go home.
August 2010
I think the second hospital stay helped prepare me for the third one. I really hadn't expected to go back that soon, and I had even packed an extra bag of clothes in the car thinking that since I had it, I wouldn't end up needing it.  Ha ha. And you know you're spending too much time there when the cleaning ladies and cafeteria people recognize you. :)
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. :)

October 2010
The fourth one was completely different than the other 3. For starters, it required 2 very long airplane flights, catching vomit in a barf bag while reassuring onlookers that she really wasn't sick, and of course thorough pat-downs & examinations of all of the liquids & the feeding pump we were traveling with instead of a nice little 45 minute drive. :) Second, it was scheduled and we were excited to get the testing done because it meant that MAYBE we would get more answers about Raya's health. As important as the trip was, it didn't make me feel any less guilty about leaving my other 3 kids with other people yet again while I was at the hospital with Raya. This stay was the first one where we had a private room and I had mixed feelings about that. Some of the roommates we've had made me WISH we had a private room, but it was really dull and lonely being in the room all by ourselves. Since we were there for testing and not because of an illness, we were at the very bottom of anyone's priority list so if Raya needed anything at all, I HAD to call the nurses' station because it was rare for anybody to pop in right when we needed something. I didn't mind that at all though since we knew exactly how long we'd be there. :)
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.
December 2010
Now here we are almost a year later. As turbulent as 2010 was for us, 2011 has been that calm. The people who spent almost as much time with my kids as I did in 2010 have hardly seen them at all in 2011. :) She hasn't thrown up since May (except for when I've fed her too fast) and my washing machine and I have appreciated the vacation from cleaning up vomit and other unmentionable bodily fluids. (it's no coincidence that "bile" rhymes with "vile") Our crazy schedule of doctor & therapy appointments has condensed down to 3 a week most weeks and 2 of her therapies are at home. We haven't been to the hospital since June when she had an endoscopy, it's been almost a year since she was admitted last, we've only had to do weight checks once a month and see the GI doctor every 2 months, we only see neuro once a year, we just decreased PT to every other week, and the girl can be in the presence of food without gagging now. :)
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.
October 2011


  1. I have hospital triggers I don't realize until they sneak up on me. Stupidly I thought I was over our hospital stay last year. A week or so ago when I went back to the hospital to drop off thank you cards, I about had a panic attack walking past the heart surgery waiting room. What a sight! Toddler in my arms, giving him the tour of the hospital, 'and this is where Mommy and Daddy...[gulp, sniffle] waited for you...[tears, faking a smile cause now the kid is looking at me with his head cocked in that way that means he's trying to figure out what the heck is going on].....' Yeah. That one snuck up on me.
    I'm thankful you are where you are today too. Us too. Here's to a really stellar 2012!

  2. Wow! This post really got to me. It makes me tear up and get that knot in my stomach that we get each time our child goes to the hospital.
    You are an amazing mother and Raya is as healthy as she is today because of YOU!
    You inspire me to get through those tough pukey days with a smile.
    I hope to meet you and Raya someday:)

  3. Oh man I didn't realize how many people have those hospital triggers. Even just going to the pediatrician makes my heart speed. I have had several days in which I could relate to you in feeling like it would never end. I've sat at a bedside praying she would live when everyone else doubted. It has made me appreciate and value my family so much more but I have been grateful that I went through those experiences and learned and grew.


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