home from hospital

Whew. It was a long three days at the hospital. Mostly for Dalia, of course. The breathing tube was removed on Tuesday morning at about 10. She didn't cry at all - though her throat was so swollen that she could barely make a peep. And I do mean "peep." When she did finally try to say something, "help, Mama", she sounded like a squeeky baby bird. The day was spent with her in Tal's arms or my arms. Trying to get liquids into her, lots of sleep. We moved to the regular peds ward, Baird 5, and fortunately had our own room. Ate ice cream, slept, tried to play, cried, tried to stand, swaggered. Lots of "Hurt, hurt, owee," while pointing at her mouth or her ankles, where the IVs were placed.

In the afternoon, Dr. Rasczka, the infectious disease specialist paid us a visit. Turns out that there are only a handful of documented cases of INH (her medication) related to low platelet counts. And it turns out that her TB diagnosis is even in question (for reasons I won't go into). So, we may have been giving her INH for 3 months for nothing. But we don't know yet... we don't know for certain why her counts were so low. A big, thorny, painful mystery.

We slept through the night. Dalia on top of Tal, who slept on one of the pull-out chairs. I went to sleep on what was supposed to be Dalia's crib/bed, about 4 feet up in the air. Nurse Sarah came in at 11 PM and had a good laugh - and found another pull-out chair for me. We were awakened at 6:30 AM by a someone with a cart ... who came to take Dalia's blood. Ok, I thought, this is the interferon TB test. She took some blood, walked out the door, and I could hear her raving about how great a patient Dalia had been. Dalia looked a lot better to me - and I made up my mind that we were going to get her discharged that day. Only problem was, she wasn't drinking. We ordered a few bowls of soup.

Med students came in. Residents came in. Dr. Laub came in. Some vials showed up and sat on a chair. Then... another phlebotomist to take her blood. Wait a minute... didn't we already go through this?! So frustrating. The first time was to check her platelets, which were normal. This test was the TB test. I was pissed that the residents didn't have it together enough to only take her blood once. I asked the phlebotomist to come back when we knew that there weren't going to be any more tests for little D. An hour later, we called her. Tal and I, along with 2 nurses and 2 Child Life social workers with a cart full of bright lights, fans, and bubbles to distract Dalia, took her to the "procedure room" to get the other sample. It had gotten to the point that anyone coming into the room scared her.

It was good to be home, though we were all exhausted. Dalia was like a normal sick kid for about 24 hours, not much energy, though enough for Elmo. Since then, she's lived on Hummus (which she calls, "Humma"), soup, mashed potatoes, smoothies, and pediasure (ingredients: water, sugar...). Unfortunately, food is coming out her nose still. Not sure what this means but we are dreading another surgery sooner than we had thought.

Thursday, I went back to work - a shell. I am still exhausted.

Henry went to Maine and is already having a blast - kayaking, buying used books at the library, sailing, playing guitar. Yesterday, Tal, Calder, Dalia and I picked 14+ pounds of blueberries. We didn't even get to the raspberries!! Later in the afternoon, when Tal and Calder were at work doing some renovations on the chicken coop... Calder stepped on two nails. Another trip to the hospital! Poor kid - he is tough. Now he is on crutches, using his already injured leg to move around to protect his newly injured leg. Tal pointed out I'm the only on not injured. Fingers crossed....