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Sunday, April 12, 2015

Time Warp

I have officially entered the hospital time-warp. In a sense every day feels like you just arrived since you haven’t really slept for more than 2 hours at a time and “breakfast, lunch, and dinner” are foreign concepts so everything blends into one long day. At other times I feel like I blink and hours have passed. Can someone please tell me what day it is? When answering or asking questions with doctors and nurses I’ve stopped using the words “yesterday” and “tomorrow” but rather use the day of the week since I’m never exactly sure if I’ll use the right term. For instance I thought I posted my last blog post yesterday, but nope, it was the day before.

Enough of my ramblings, what you really want to know is how Anellah is doing. Thank you for asking! I had to re-read my last post TWICE to figure out where I left off…but here is my best synopsis. After her procedure on Friday she returned to the room and slept on and off for hours. I think I slept too, I’m not really sure. She was not happy that she could still only have clear liquids but we made popsicles work. Eventually she was able to eat some real food and had graham crackers, what a treat!! For dinner I ordered her everything I thought she might like. But she wasn’t very hungry by then and just had a few bites of grilled cheese. As the night progressed she seemed to be getting restless, her stomach started feeling full and hard and within a couple hours she was exhibiting terrible pain. She had started to bleed internally again. The doctors on the floor were consulted, plenty of doctors and nurses came in and at one point I said to the nurse, “yeah you just need to get blood ordered because she is going to need it.” The “Rapid Response Team” was called and an A-MAZING nurse from the ICU came along with a fabulous doctor. They took control of the situation and although there was still a lot going on, it felt so much calmer once they took the lead. Once she was stabilized, calmed down, no longer in pain, and was receiving blood and a quadruple dose of the medication she was previously getting in her IV we moved to ICU. The ICU nurse stayed for the first few hours finishing getting things in order and making sure that the nurse who would be assigned to Anellah felt comfortable with everything. My favorite thing he did was put in a big IV that would be used exclusively for blood draws. No more phlebotomists rooting around in Anellah’s arms and feet!

Morning came and Anellah got a bit of rest here and there between tests and assessments. We have been in the ICU ever since. The ICU room itself is like a fancy hotel! It is huge and the TV system has on-demand movies, games, and TV. Being in the ICU, though, means constant interruptions (even more than on a medical floor!) and more “rules” like the fact that she can’t have balloons in her room. The biggest bummer is that Anellah is in isolation since she had a cold when we were admitted. This means she can’t leave the room (not that she has the energy to do much but she does keep asking to go on a wheelchair ride down the hall or to the playroom). Isolation also means that I can’t use the family lounge which is the only place I’m allowed to eat on the ICU so I have to leave the unit in order to eat…(not that I always obey that rule)…and the last important thing it means is that Anellah can’t have any visitors under 10 years old so I haven’t seen Capper or Evelyn since Wednesday night except for the 10 minutes I saw them Thursday morning. Anellah and I really miss them. The second big bummer is that the medication Anellah is getting in her IV means that she cannot eat anything. She is very sad about that and I can’t even count how many times she has asked to eat. Other than one meal on Thursday, 3 graham crackers, and a few bites of other food on Friday she hasn’t eaten since Wednesday.

Each day Anellah has spent a tiny bit more time awake. Yesterday she was willing to do some coloring and paint her nails. Today she was willing to play with play doh for a few minutes. These seem like little things that before that she was so tired and miserable even doing a fun activity was too much.  Today I made her get out of bed and look out the window which she didn’t want to do but didn’t protest TOO much.
I was finally able to talk to the surgeon today (yes actually today not Saturday as I’d originally been told). He said that he doesn’t actually recommend surgery based on the options we have with Anellah’s body. He had to take into consideration her complex medical needs and also the anatomy of her organs/vessels. He thinks the best choice is to do a procedure that is actually less invasive than overt surgery. It sounds like a good option but I’ve learned not to count my chickens before they hatch and I am waiting to bank on that procedure until he can discuss it with the doctors (interventional radiologists) who would actually perform it. He plans to talk to them tomorrow.

Well I have much more to write but I need to get back to our room before Anellah wakes up. Not only does she hate to be left alone but since she is on an insulin pump she is supposed to have a parent with her (though the nurse has my phone number if she really needs me.)

Oh, also, at some point, our goat Barbara had her kid which is super-exciting but I was dying that I missed it! After all, one of the reasons we didn’t go out of town was so that we could be there for the birth. Yes, I know I am grateful that God kept us near Seattle rather than heading to Oregon and that outweighs me being sad I missed the kidding but just being honest I am still disappointed.
Thank you all for your prayers and for asking about her. I’ll try to keep you all more updated. I have some specific prayers requests I’ll try to post later but Anellah’s nurse just called so it’s time to get back to the room.

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