Monday morning I got up around 5 to a Jillian who had taken off her o2 and her stats were dropping. I got the oxygen back on her and her numbers went back up. After that little event I was up for the day. Brent got up for the day and got ready for work. Around 6:30 the first resident was in. He listened to her while she slept and said that her lungs sounded the same as the day before. He said that we would have to see how the day went.
Over the next two hours we were able to slowly bump down her need for oxygen. Off of oxygen her pulse ox hung out around 95. Every once and a while it would drop down into the 80's but it bounced back quickly. She did not wake up until after 9am. Mid morning my mom got there to help me out.
Around 10:15 we were greeted with a room full of gowned up people for rounds. They said we would see how the day went and that there was a chance that later in the day we could go home.
During the night Jillian had not peed. This is not normal for Jillian. She is know to soak through overnight diapers if she is in them for more then 8 hours. By morning she was bloated. She had little sausage fingers and her cheeks were full. She looked like a chipmunk. By late morning she finally started to pee. She gave us one good diaper yesterday and then the rest were so so. She pooped once yesterday too. She had not done that in a couple of days. It smelt awful! My nose was plugged and I could still smell it.
As the day went on her numbers continued to hang out it the mid 90's. The doctors said that they wanted her to take a good nap before we could leave so that they could make sure she could keep her stats up while asleep. Jillian however was not interested in napping most of the day. We finally got her to sleep around 3pm. She was able to hold her stats in the low 90's while asleep but was retracting a lot.
Around 4pm the resident came in again and said that since she did not need oxygen anymore, and we know how to do all the other respiratory things, that she could go home. I have to admit I was a little scared to take her home. After how fast she got bad, and the fact that she was still retracting and sounding like Darth Vader, I was nervous. I knew that once we got her home we would not be able to suction her as well as we could at the hospital and that suctioning was really helping her. I took a leap of faith and signed the discharge papers.
Mom and I packed up all of our things, they suctioned her really good one last time, and then we headed home. Once we got to the end of the skywalk mom went out to get the car and Jillian and I waited inside by all the wheelchairs. A doctor that we had when we were in a couple of weeks ago on the 11th floor (and over a year ago), was leaving. She noticed Jilli and stopped to say hi. I told her we were glad to be going home. She looked at me surprised and asked if we had just been in again. I told her what had happened over the previous 24 hours. She said she was glad that Jilli was getting to go home again. Once Jillian got home she wanted to touch all of her toys. It was like she needed to make sure none of them had run away while she was gone. It was cute.
Today she is still retracting some, especially when she sleeps. She still sounds a little like Darth Vader. You can tell where Jilli is right now... just follow the breathing. I am still suctioning her nose. She wants the end to go in her mouth and not her nose so she keeps getting mad. She is so goofy sometimes. Right now she is asleep on my chest. It is hard to explain to a 15mo old that they need to pace themselves. She will want to play and do things and then just crash. She will slowly build up to being her bouncy self again.
While we were in the hospital we talked about how her ped wanted us to see genetics again so that we could try to figure out why Jillian gets so sick. I called central scheduling Friday and they said that genetics is reworking their schedule and they would leave a message that I would like an appointment. The doctors inpatient said they would try to help us get an appointment quicker. They called and got the same answer and left a message that someone really needs to call us. Hopefully between me calling, GI making a referral and the floor doctor calling, we will get an appointment set up.
Yesterday I also got a call from the GI clinic about her repeat of the PH probe test. They wanted to do it on April 8th, however I got them to agree to do it April 10th because then we have the weekend for her to bounce back after the test so I will only need to take 2 days off of work that week instead of more. I try hard to take as few days off as possible, but it is hard with Jilli.
Jillian's ped also called me in the morning yesterday after she got into work and got a note saying she had been in the ER on Sunday. She called to see what was going on. I love that her ped is so concerned about her and calls me as soon as she finds out something is wrong so that she can be a part of the team. She brought up the fact that Jillian got a shot last Wednesday. She said that scientifically Jillian should not be getting sick a few days after getting a shot but it just keeps happening and that we cant ignore that. She said that the goal for right then was to getting Jillian better but that we would talk more once Jillian was out. She said that she wanted Jillian to see her after she got out and to give Jillian a big hug from her.
Birth to 3 also called while we were there and set up the appointment to do her eval. They are going to come at the end of this week while she is home to observe her. While Jillian is not functioning currently at 100% go mode, I think she will still show them enough so they can make a plan. Most of those eval visits have just been a lot of me talking to them anyhow so she can just sit and cuddle while we take care of all that stuff.
Thank you for all of the prayers the past few days. They were greatly appreciate! We go to see her ped tomorrow at 10:30. I'll update again after that.
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