Weekly Update

Last Tuesday I took Hailey down to Salt Lake for some follow-up appointments. We were supposed to meet with someone in medical rehabilitation to discuss Hailey's developmental progress, pulmonology so that they could see her when she is healthy (they have never seen her that way), and genetics, who we haven't met with since Hailey was born to see if they can offer any help or advice on what we should be doing for Hailey. Then, we were supposed to get a sedated echo (for Hailey that means under general anesthesia in the operating room just to be safe on the sedation end of things). They usually try to do a sedated echo about 6 months after heart surgery, but Hailey was in the hospital with human metapnuemonvirus at 6 months after surgery so it had to be delayed. I had been under the impression that we would not be doing the echo until May because that is when we will be down in Salt Lake for trach-vent clinic and it seemed like they might coordinate it with that.

Monday about mid-day someone from pre-op called to give me all the anesthesia instructions, like when Hailey could only have clear liquids and when to stop her feeds, what medications to give and which ones not to give, etc. I was surprised because I hadn't realized they were trying to do the echo this trip after all. Plus, my intention had been to drive down Tuesday morning and come back Tuesday night. I looked at the itinerary that had been e-mailed to me and the echo was supposed to be at 2:15pm. Apparently, the OR scheduling team had changed it Monday morning to 6:15 am. We have learned from quite a bit of OR experience that pretty much whatever the OR scheduling team says goes. They have to try to squeeze everyone that needs any kind of procedure in during the day somehow and make it all work, so you can go with the time they give you.

I quickly made about a dozen phone calls trying to re-arrange things so I could leave Monday night. It was a stretch, but I got it all arranged. Right about then, I got another call from Primary Children's. They said they were changing the time back to 2:15. Our cardiologist, who was actually in Idaho doing clinic visits, had made room in her schedule to be on the phone during the echo, so they had to change it back. I was mostly relieved, but I had to call and change everything back to the way it had been before. 

Now they wanted us to be checking into the OR at 12:15 for our 2:15 appointment, which was right in the middle of one of our appointments. In order to meet the OR's request, we would need to squeeze 3 appointments in between 10:15 and 12:15. They told me they would call me back and let me know how they were going to work it out.

Ben and I spent the rest of the night packing everything that we were able to pack ahead of time for Hailey. It was a lot of stuff despite just being a day trip again. We were up until about midnight. 

The next morning we both got up at 5am and finished packing. I left around 6am and picked my sister Jennifer and her little girl up. It was such a huge blessing to have Jennifer with me. She sat in the back with Hailey and suctioned her when she needed to be suctioned. At one point I got too tired to drive, so I traded Jennifer places and she drove the rest of the way. 

We got to the outpatient clinic side of the hospital, across the street from the regular hospital, although it is connected by a skybridge, around 10:10am. By the time we got Hailey unloaded and up to the clinic it was 10:30. They almost canceled the first appointment because they said we were 15 mintues late. Luckily, the doctor wasn't too busy yet, so they let us go ahead. We met with the doctor from rehabilitation first and mostly talked about Hailey's developmental progress despite the stroke she had at some point. He watched Hailey do things with her hands, sit up, etc. He said he couldn't speak for any of the other things Hailey has going on, but strictly from a stroke standpoint, he would think she would do really well, walk normally, run, etc. It depends of course how much of the DiGeorge (22Q.11) component plays in, but that was very encouraging.  

We hurried out to our next appointment. I still hadn't heard from anyone about how they were trying to change things, so I stopped at the receptionist's desk for the next clinic. Some very very nice lady there called around to try to figure things out. The geneticist came downstairs from his clinic and got us straight back to meet with him to try to help out. That was so nice of all of them. They bent over backwards to make it work. Most of the things we talked about with the geneticist were things we knew, but it was good to check in. He did suggest that we get Hailey's eyes checked soon to make sure things are going well there, since kids with 22Q can have problems with their eyes sometimes. 

During our second appointment, the receptionist at the front desk had been working things out for us to see the pulmonologist just as soon as possible. She sent us to the pulmonology front desk and they got us in right away too. They even called the OR and arranged for us to get to the OR check-in desk just a little bit later so that we could make it. The pulmonologist was really happy with how Hailey is looking. He said he thinks we will try to wean the vent settings a little when we go to trach/vent clinic in May. He also wanted to get an x-ray of Hailey's lungs so that they have an idea what her lungs look like when she is healthy. 

After that, someone walked us across the bridge to the main hospital where we checked in to the OR. I waited with Hailey while we signed all the paperwork. Hailey was not happy to see that we were in the main hospital. She definitely recognized it. I walked her back to the OR and then ran to meet Jennifer and grab some lunch in the cafeteria. I had about 45 minutes before I had to be back in the waiting room. After lunch I went back and Hailey was just about done. She was so mad when she woke up in the recovery room of the hospital that they had to have me climb up and hold her to get her to calm down. I didn't blame her. She had been poked and prodded and starving all day.  Thankfully they were able to put they IV in after they gave her the laughing gas, but they had still had to try several times and I'm sure she had some sore spots from that. She still wasn't happy with me until she was recovered enough to be put in the stroller.

Then, I think she realized we were going home and she felt a lot better. 

We still had to go get the x-ray before we could go home though. She had completely had it by then and she cried through the whole thing. 

It was almost 5 by the time we got done at the hospital. I met up with Jennifer and we grabbed some dinner on our way out of town. Once again, Jennifer sat in the back with Hailey. We left late enough that we got caught in the end of rush hour traffic, so it was a little after 9 by the time we got home.  It was a crazy day, but honestly it went great considering how much we had to fit in. The people at Primary's were so sweet!!! I really appreciated all they did to make it all work even though the confusion had nothing to do with them. 

We had an appointment back in Idaho with Hailey's cardiologist the next morning. She said that the echo looks good enough that we can just go ahead and have the regular cath lab follow-up for Hailey one year after surgery. She is going to check to see whether Dr. Hanley's team will want us to do that in Salt Lake or go out to Stanford to do that. That will be sometime in September. 

Overall, all good news, just an exhausting few days. We are so happy that Hailey is doing better. Through the whole visit people who know her kept commenting on how good she looks. It was great!