September 19

I apologize for not keeping everyone updated. We've been having long stressful days and when I get home I hardly have the energy to crawl into bed.

Jaela was extubated (life support removed) on Thursday and she did great. She was breathing well enough on her own that she only needed oxygen and not a CPAP machine. She smiled as soon as it was out! That night they let us start feeding her by mouth a little bit.

The next morning someone from Speech came to evaluate the way she was eating and thought she needed to have a swallow study done. She had to swallow barium while being x-rayed so they could see if she was swallowing her food or inhaling it. They said she was aspirating (getting some fluid in her lungs) with regular fluids so it just needed to be thickened a little bit. They called it nectar consistency. We got back to the room and asked for a bottle to feed her and they brought back what I like to call lumpy pudding and, of course, wanted Jaela to drink it from a bottle. Jeremy and I explained to every nurse and every doctor that walked into that room that making Jaela try to eat that was ridiculous and there needed to be some sort of compromise. They all just said the same thing. "She has to have the thicker fluids or she aspirates." We agreed, but also thought Jaela should be getting fluids!

They moved us from the PICU and onto the pediatric floor on Friday. The next day the nurse brought us our typical sludge to feed to her and when I asked for more she took the bottle from me and was surprised by what was in there. (By the way, I could turn the bottle upside down and whatever the heck was in there wouldn't even move, it was that solid). She said it wasn't right and she getting it fixed. She put a quarter of the thickener that she was supposed to and it was still even a little too thick. She had the speech people come visit us again so I could explain the madness to them. I had them put 1/4 of the thickener in just to see if that is what "nectar" is supposed to be like. Then I had them put the full amount in to see what they'd be making Jaela try to eat. They were shocked! It wouldn't even pour out of the bottle. They agreed with me to do less thickener so we got that problem solved.

Our other problem, Jaela is scared. If anyone touches her, she cries because she thinks they are going to hurt her. For the past couple days she's just cried all day, and even more when I put her down. I've spent 14 hours days sitting at her bedside trying to calm her. But she's had enough. They draw blood twice a day (I'll explain later) and it usually takes 3-4 pokes before they can get the blood they need. They rip tape off her so hard that her skin is red and blistered, they pull on her limbs to move her even though we've said time after time not to do that. I worry that when we're not there she cries and no one will comfort her. The hospitals way of comfort is sedation instead of attention. I worry they come in, take her blood, and leave her to cry alone.

The reason they're taking blood so much is because her calcium levels keep coming back too high. Potassium affects the way the heart beats so the doctors are very worried, but baffled because she shows absolutely no signs of high potassium (arithmea, or irregular heart beat) but that number keeps coming back too high on blood tests. She's had an EKG that looked fine and today she'll have another echocardiogram and they'll put a PICC line in so they can take blood without it hurting. We were kind of expecting to be able to come home today but now her potassium levels have to be in the normal range for 2-3 days before we can come home. They also moved her to the cardiac unit to keep a closer eye on her heart.

It seems even harder to be in the hospital now than it was a week ago. Last week we were in over our heads and there was nothing we could do for her. Now we're back to asking to be her parents. We have to ask to feed her, ask to change her diaper, ask to give her a bath. When we got to her room yesterday the nurse was giving her a bath, even though I'd told her the day before that I'd do it. She wouldn't even let me help. Then when Jaela needed to be changed I told her I'd do it (I prefer to because they pull on her legs way too hard) but she told me no. She'd do it.

We're very frustrated and very tired, but very grateful we still have Jaela.