Tiara update 1/29/14

I know I said I was going to take a few days off from posting but I changed my mind.

I just wanted to reflect on the dinner I had last night.

Every Tuesday a free dinner is provided for the families who have children in the icu. The dinner is donated by a restaurant, last night it was Dave and Busters, and served by the volunteers who run the Ronald McDonald room on the 6th floor.

In the past, I have gone to conference room, taken a plate and then went and ate in the other room. I just couldn’t bring myself to sit around the conference table in silence and eat with the other parents. Way too depressing for me.

Last night the room was pretty empty when I entered. There was a distraught couple in their mid forties sitting at the end of the conference table, a young pregnant woman sitting in the middle and a woman about 50 sitting at the other end of the huge table.

The room was silent except for the chatter from the 2 volunteers who we’re talking to each other and trying to cheerfully offer drinks and desserts. For some reason it felt ungrateful to exit with my food and eat in the other room, even though I really wanted to run. I hate depressing silence.

I chose a spot one chair away from the extremely pregnant young lady. I started to eat my Caesar salad in silence with all the other distraught parents and felt like I was going to scream. I kept staring at the holly fabric table runner that no one thought to put away after Christmas. On top of this holiday runner were 3 fake orchids. I kept trying to figure out how I could make this bland beige conference room feel happy and welcoming. My first thought was chuck the hideous table runner and put on a little music. The silence was deafening, but I willed myself to stay and eat.

I almost choked on my chicken and that’s when I decided I couldn’t take it anymore. I looked across at the couple and said” when did you get here?”

Her: “today.”

Me: ” Do you have a son or a daughter?”

Her: ” daughter.”

Me: ” how old is she?”

Her: ” 17.”

At this point I’m kinda regretting my attempt to converse.
Me: ” Is she going to be ok?”
Wrong question tiffani!!!!

Her: ” Of course, aren’t they all?”

Clearly this lady was a newbie to the icu. No words from her husband at this point. I decided to move my amazing conversational skills down the table and try my luck with the 50 something lady.

She welcomed my questioning as her son was a frequent flier and had the same virus as TT. He too had a rare genetic disorder which compromised his immune system landing him in the hospital often. We started discussing IEP’s, IHHS, community support groups, oxygen use at home and long term hospital stays. I looked across the table and the couple look horrified. Now they looked like they were ready to bolt.

I then turned to the pregnant woman and tried to include her in our conversation but when I asked her a question she didn’t respond. I thought she might not speak English and Celine spoke Spanish so she served as an interpreter.

Once she answered Celine’s question, she quickly got up and exited the room.

The couple spoke up.

Her: ” Do they serve dinner every night?”

Me: ” No, just on Tuesdays but they always have snacks in the Ronald McDonald room and a refrigerator so you can leave stuff in there. It is really a great space.”
Her: ” Oh, we haven’t been in that room yet.”

Husband: ” Yes we have! “

Her: ” No we haven’t !”

Husband: ” Hmmm, we walked through there. That’s where the big tv is.”

Silence.

Resentment, fear, anger, sadness, loneliness and despair. She looked back down at her plate.

Husband: ” We better go, good luck to you all.”
.
Her: ” Yes thank you for the information.”

I felt really sad for them, they weren’t coping well at all and didn’t seem to be working as a team. There was blame between them.

I moved down and finished my conversation with Celine and promised to greet each other in passing as our kiddos are only 2 rooms apart.

As for the update on tt. As I suspected she had another infection in the lungs which explains the high fevers for the past 2 days. They added on a third antibiotic this morning. The culture hasn’t completely grown out but they think it strep or staph. This is typical for extended hospital stays and not a huge worry. Her ventilator settings are still high but they are slowly trying to taper them down. Her creatine level went back up today(indicator of how the kidneys are functioning) so they will probably need to increase her lasix drip today.

I will find out more after rounds. Either way I know she will recover, it is just going to take a long time. Based on past experience I estimate she will be here another 2 weeks, if everything goes smoothly.

Thanks for all the prayers and support.

xoxo tiffani