Thursday 9/6 - Jeff and I drive Ellie to the hospital in Atlanta. Thanks to a neighbor, the other three kids were taken care of immediately. Jeff's work continues to be compassionate and flexible. Ellie was looking pretty rough. We were in the ER for three hours where they stopped her feeds, had several failed attempts for IV placement (been there, done that) and took her vitials - 103 temp. So, I climbed on the stretcher and Jeff carried our bags down the long hallway to the Intensive Care Unit. Not even a regular room tonight for the girl! The intensivist put two IVs in her and the world's best babysitters took care of her as we slept at the Ronald McDonald house. Grandma comes to the house to take over.
Friday 9/7 - We get to rounds early and the roller coaster begins. Ellie looks so "bad" - heavy breathing, major chest retractions (looks like she has the hiccups) and her x-ray shows "wet lungs". Blood work says it's not pnemonia - but it IS a common cold..."rhinovirus". All her regular doctors agree it's a sign she's got very little reseve. They tell us "Ellie's not getting better. We don't know if she's responding to the other two meds. It may be time for a third medicine that is so rarely used, you have to be taught by a nurse how to give it. It will require a surgically implanted IV in her chest and the drip will be 24/7, she can not get off it until her lung pressure is under control. You will be assinged a team on Monday that will help you navigate some of these decisions". We misundesrstood what that "team" was for and it turns out they are a team including a social worker, nurse and a pediatrician who gets assigned to "frequent fliers" of the hospital to help meet their non-medical needs. Sort of like a support team when things like "pain management, quality of life, comfort measures" are thrown at you. We got a consult from them as soon as this new drug they were thinking of starting entered the picture. It can cause chemo-like side effects including chronic pain. That night I crawled inside her crib and laid next to her while she did her little "coo" which is really a low, puppy-sounding growl. It's the cutest thing ever. We left and pushed a cart through Target and went to eat pizza during the 3 hours we could not see her that evening.
Saturday 9/8 - She looks pretty good. Lots of suctioning of her snotty nose and some Tylenol did the trick. She gets to leave the ICU and we get a room at the "step down" unit. Our little family is together again. We're still very worried about her but on the weekend it's not too busy so we just try to relax and watch some movies.
Sunday 9/9 - She had a good night, had an xray and some extra diuretics have dried out her lungs. She looks great and Jeff and I are enjoying being with her and eachother. Papa arrives on the scene at home to take care of the three - he comes with a cooler of food courtesy of "Mrs. Claus".
Monday 9/10 - We get the one doctor on the cardiac team here that's either been out for the summer or researching and publishing because we'd never been able to meet him during our last stay. He's smart. Very smart. And very good. He asks for an ultrasound which is the best tool ever to see Ellie's lung size. The pictures get sent to him right away and he comes to us. He think she looks better from her 7/31 echo before she started taking the second drug. We want to cry and hug him at the same time. He sees a hole that most kids have that closes on its own called a PDA. It is not the same as a heart defect. Ellie's is very open. He wants it plugged. He schedules a cardiac catheritization to put a "spring" in it. The cath doctor comes and says outcome should be "great".
Tuesday 9/11 - Ellie stops being fed and gets into the operating room at 12:30. We go eat lunch at a restaurant and buy a CD at a used CD store we just happened to find. There is a speical song I heard all through the pregnancy that reminds me of Ellie. On Wednesday, 9/5 I got away from the house at 5:00 pm after a day of being totally frazzled over the doctors wanting to admit her. I ran a mindless errand and the song came on the radio. I heard the beating of the piano keys at the beginning of the song and felt Ellie and I were connected and she needed us to be strong and take care of her in the special way she requires - hospitlization.
She gets a fever at about 9:00 pm and starts crying unconsolably. She has a spit up. Her IV from the procedure starts leaking and blood is going everywhere. Four people in the room, x-ray comes, doctors get paged. Party time. Some agressive respitory chest patting and some comfort meds bring the temp down immediately. Common reaction to blood transfusions. We all sleep at around 1:00 a.m.
Meanwhile the kids at home are now enjoying Papa AND Oma and we have a nice talk with Jacob on the phone. We ask him a bunch of questions and then he says "How is Ellie doing?".
Wednesday 9/12 - She looks great. She's breathing 60 times a minute, normal for her. She's comfortable, her color is good, she's sleeping with no problem and is in absolutely no pain according to her signals she gives us. Her x-ray still has some "junk" fluid and a tiny part of it is sticking together but it's being treated by such a high flow of oxygen up her nose that they have to teather her to the bed so she doesn't float away. Joking. The rounds this morning had a light, happy feel as we plan the rest of the week and that stomach wrap so she stops throwing up. I enjoy creating this blog and Jeff holds Ellie in the room as we wait to get on the operating room schedule. Then we expect to go home and let her heal with time and the two meds she's on - not the third one at this point.
Oh and a not so small detail - more than two cardiologists have now said Ellie is "close" to having her heart repaired. Her weight gain needs to stay the same or go up and that number I mentioned needs to get to "4". Then they will close her hole and see if the girl can function a little better with lungs and heart being friends like they should. "In the next few months" is mentioned. Wow - will Ellie have surgery before Christmas??
So yes there were some days we thought it was really going in a bad direction. As always, one never knows but we've taken that possibility out of our mental "backpack" for this moment in time.
