Yesterday was surgery day. (Ie, I have not slept in several days because I am figuring out in my head all the things I need to bring/do before that happens, and a little stress too)
I got a voice mail while I was at work yesterday that made me just a tad bit anxious. It was something along the lines of "this is day surgery, we are calling to see if you are on your way. Call us at...." It was 10:15am. We were told to be at the hospital at 12. It is over an hour drive with construction right now. I called them back. They explained that they had a cancellation and were going to take us early if we were already on our way but that by the time I called them back it did not matter anyhow.
Jillian and I left work at 10:45 and headed up to Children's. If you are headed to Children's anytime soon, be aware that the parking garage is under construction and there is no parking on the first two levels, making a packed parking garage even harder to park in. We did find a spot but they were hard to find yesterday.
We headed in and got to the security desk. The security guy that we have seen during our many trips to children's was sitting at the desk. I said we were going to surgery. He said "you know how to get there right." Yea, I do.
Her surgery was going to be on the 3rd floor (there is also a surgery area on 4th floor). We had never checked in on the 3rd floor for a surgery because we always ended up on that floor after weird circumstances and always bypassed their check in area. Yesterday we got to experience 3rd floor check in :)
They called us back and did her height and weight. She stood on the big scale so she thought she was pretty cool. The nurse thought I was kinda strange for taking her clothes off to weigh her however with all of her stuff we want really accurate weight. She was up a tiny amount however I left a diaper on and her belt, which we do not do in the GI clinic, making her weight the same.
We then went back to the Pre-op room where people asked questions and and over the next 2 hours we talked to people about the surgery. We spent our time giving tube monkey a check up and playing on the iPad. My mom joined Jillian and I around 1:30. Around 1:50 they gave Jillian her happy juice. She is rather adorable, and kinda funny in the in between state. She would smile, and then her passy would fall out and then she would look confused. Around 2:20 they took her back (only 25min behind schedule, not bad!)
Watching them carry her through those doors I can't go in and having to walk the other direction is the hardest thing I have had to do over and over as a mom. She started to cry just as they went through the doors and it took everything in me to keep myself from balling right there in the hallway.
I went to check in at the waiting room and my mom went down to grab herself some food. (I don't really eat on hospital/test/surgery days. I can't) The lady at the desk asked if I knew how this room worked. I said yes. She said "good... well not good that you know, but good that I dont have to explain it"
I then found a seat and started working on some thank-you cards. Mom got back and joined me. After about 20minutes her pulomologist came and found us. We went back into a little room to talk.
First she told us she was hard to get an IV in. We know that well from other attempts (I did not realized until later how hard she was this time. She has 2 poke holes in each of her feet, and both of her hands. They finally got it in a strange place in her wrist. Ie. I have counted 8 poke holes so far) She said that there was an area by her vocal cords that was not as strong as it should be but that the ENT would talk to us about that. She said the lungs looked good. There was a little swelling in one part but that could be from her being sick for the past few weeks. She said structurally they still looked good and that they took samples and would send them off to the lab. She said that when she left the OR the ENT was looking at her ears.
Mom and I then went back to the waiting room. After another half hour of no one coming out we knew they must be doing the ear tubes. Jillian has not had an ear infection in over a year however when she was at audiology last week the little thing read that she had a lot of pressure in her ears and she had low tone hearing loss (which she has had as long as I can remember and we have seen audiology about it in the past and they blew us off) The audiologist called the ENT and asked her to look at putting in ear tubes during the surgery.
After a little while later the ENT came to talk to us. She said that she did put tubes in Jillian's ears, however the one ear did not have any fluid behind the ear drum and the other ear had a very tiny amount. She wondered if Jillian has really thick ear drums leading to a poor test. She said she was already in the ear so she put the tubes in to see if they would help the hearing loss at all since the ear tubes would not really harm her.
She then showed us a video of Jillian's throat. There is a little area in front of her voice box that is dipped in instead of flat. They were worried that there was not muscle there however there was. They said there is not much to be done about it now but if she continues to aspirate down the line we might do injections into it. She said there were not any holes or clefts in her airway that would be causing the aspiration.
I was then called back to go to the post-op room. A different lady was walking me back and she asked if I had been in the post-op room before. I told her yes. She said "good..... well good that you know what it is like so it is not new for you, but not good that you have been back here enough times to know what is going on."
I got back there and she was asleep. The nurse and I talked about how she was doing. Her lungs did not sound great however for the one procedure they have to put fluid in her lungs and they only get 1/2 of it back out. The nurse worked on charting and cleaning stuff up. He said they had to help her start breathing after surgery and once I looked over and noticed all the stuff there that they used to help her, I just wanted to cry. He said though that once she started breathing well on her own, she started to used the tube in her throat as a passy. That would be my girl. After a little while of us being back there she woke up... screaming.
They moved us up the the forth floor post-op after some discussion. She screamed in pain for almost 2 hours after surgery. It SUCKED! Eventually she got more pain meds and calmed down. Brent came up and joined us at the hospital after work and my mom headed to an appointment. They wanted to make sure she accepted her j tube feeds before we went home.
By the time her pain was finally managed, her respiratory rate was stable, and she had some pedialyte in her j tube, it was after 8pm. I was exhausted. They had told us to plan on spending the night but since she met the requirements to go home they let her go.
It was one of the longest drives home EVER! It was so hard to stay awake. Dan had offered that we could crash at his place however we did not have formula or a bed with a proper incline for her to sleep in. We also did not have her neb or her meds with us so we had to go home. I ended up calling my mom and we talked while I drove just so I stayed awake. Honestly, it would have been easier if we spent the night.
We got home and had to get settled in, get her meds and to bed. By the time we got to bed it was late. We continued to give her pain meds during the night to help her be comfortable. They messed with her throat, lungs and ears all at one time and she is feeling it.
This morning it is 9:50 and she is still sleeping. Hopefully she will be able to rest most of the day today and her pain will be better managed. I'll update more later about how today goes.
update: She woke up at 10am when her pump went off. She is kinda crabby and wants to sit in her Sofia Chair with a blanket and tube monkey and doll by herself. She woke up with white vomit on her shoulder/arm. We are assuming it is her reflux med that she vomited. I am not sure if she vomited anything else because her bed is soaked with pee, sweat and probably vomit. We will watch it today to see if she vomits any more.
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| She gave her Tube Monkey a check up. He got a name band and got to go in the OR with her. She loves her Tube Monkey and I feel honored to get to make them for other kids like her. |
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| Looking at grandma's iPhone |
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| Playing on the iPad. She loves the Dinseyland app a lot! |
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