Hospital stay #5

Wednesday started early like any morning at the hospital. As the nurse said the "scouts" (med students) where in early (6:30). Around 7 was rounds. The nurse had told me the night before that round where different on this floor. They are a lot quicker and about the facts not about digging in deep. Rounds lasted about 5 minutes (can last up to a half hour on other floors).
The nurse came in and said that we would be be able to do the EEG in the room YEAH! A tech came in around 9:45 to do the test. By this time Jillian was sleepy because we made her stay awake after rounds in case they said we could do the EEG. We kinda broke the rules for this because Jillian should have been woken up at 5 but because we did not know if it was happening or not at that time we did not want to bug her. She was barely awake by the time he came in anyhow and that is what they wanted. She was not a big fan on getting all the wires attached to her head but she did not scream. The tech finished attaching them and then he left the room for the test to take place. We left Jillian in her crib for the test and she fell asleep very quickly. Brent worked on work and I blogged. The tech came back in after 35min and said he needed to wake her up to see how her brain acts waking up. She woke up calmly and started talking. He took all the stuff off her head and left.
We hung out and I went down and got Brent and I lunch from the cafeteria. Around 1 her nurse came in and said we should give her a sponge bath before surgery. She started bathing her and the head nurse came in and said surgery had just called and said they were sending someone up to get Jillian. It was almost 2 hours before we were expecting to go down. We got her bath finished up and by that point someone from surgery was there.

With EEG probes on

We walked down to 3rd floor general surgery and were put in the same holding room as the week before. Doctors and nurses came in to talk with us. This time they did not use Versed to make her loopy first. Around 2:30 they came in and got her. It was hard to not cry. Someone came over and got Brent and I and walked us to the waiting room. After about 40 min the surgeon came out and told us his part went great and that radiology was in at that time converting it to a GJ. The second part of waiting felt like forever. Around 4:30 they came in and said one person could go back. I went back and Jillian was sleeping. They said that she had fussed a little but that she went right back to sleep. It was nothing like her coming out of the first surgery. After a few minutes they said it was time for her to go back to her room.
We went back up. She slept the whole way. We got up to her room and they checked her out again. She was so out!  Someone from x-ray came up to do an x-ray to make sure the tube was in the right place. He said he needed to do a chest x-ray. I knew they were looking for farther down but... He put the x-ray thing under the mattress, this is when the momma bear claws almost came out. He was not gentle AT ALL!  She was just out of surgery and he was messing with my baby. She gave him a stink eye and went back to sleep. He went and asked the staff if the pic was what they wanted and low and behold nope they wanted one that showed lower... where the tube was. He redid it and left.
My mom and I went and picked up dinner for us and when we got back Dan was there too so the 4 of us had dinner while Jillian slept. She wanted pain meds around 10:30 and then we went to bed. They kept doing diaper changes during the night to make sure that she was hydrated and they made her upset. She is not use to diaper changes during the night and bending to get the diaper under I am sure hurt! Around 3am she needed more pain meds.

In Surgery holding

Around 6:45am people started coming in and asking how the night did. At rounds we were visited by the on call surgeon. He said she looked great and he might send us home that night. Around 8 we got milk started again at 15ml per hour. Around noon we bumped it up to 30ml per hour and caped her IV. She was taking it great and only wanting pain meds every 4-4.5 hours. We tried to pick her up around noon but it hurt her too much to be held. She finally let me hold her around 3.
In the afternoon we were visited her GI dr. She looked at her and said she was doing great and that she was happy. At the same time the discharge person came. She was in charge of making sure we got the correct supplies from the home delivery company. A little while later someone from nutrition came in. She told us we would be bumping Jillian up to 48ml per hour now. We said on plain breast milk right.... no, it seams that the nurse we talked to last week had not documented that change. No one was sure where that came from and she said we needed to go back to fortifying to 24 cal.
Around 3:30 they came in and said they would be discharging her soon and gave us her script for oxy to be filled at the pharmacy. Brent went down and got it filled. Around 4:45 the nurse came in with the discharge papers. We signed and packed up our stuff. We got out to the car around 5:30. We got in the car and headed home.
When we got home Brent's parents and brother were waiting for us. Dan was making us dinner. We gave her meds around 10:00 and went to bed. She slept until I got up at 7:30 to pump. I pumped and she played. I went downstairs to put the milk away and came back up and she was asleep again. She slept until around 10 when I went and woke her up because her milk back had run out. I realized that she was still in her diaper from the night before. They might say 12 hour however they dont really last that long. There was pee EVERYWHERE! I picked her up and ended up with a wet shirt. I got her cleaned up and got all the wet laundry in.
Jillian and I hung out during the day and got some things done around the house. In the afternoon I went to change Jillian's diaper and looked at her incision. I noticed that how her tube was laying was pulling on the incision. In the hospital they did not show us how to tape her tube so that it did not pull, I only knew that the way it was pulling was a bad thing because of all the reading I had done before her surgery. I then figured out that her tube was going to have to stick out more and then come back down. I struggled how to make this work. Dan got home and noticed me sitting on the floor getting upset and had me call his mom for help. We talked it through and I made it work. That night I posted to Feeding Tube Awareness asking if anyone had a better idea of taping. I am still working on getting it just right but I think it is better then it was at first.
We packed up once Brent got home and Dan and I took Brent's car into Kenosha and a while later Brent left the house in the van with all of his DJ gear. When we got to mom and dad's my dad's side of the family was there eating tacos. My grandma makes these amazing home made taco shells out of corn meal! Food gathers the family! We got to catch up with people and even had Napolian for dessert! We headed to bed late. Jillian only took 3 doses all day of oxy for pain. She is so strong!
Since she has gotten home she has randomly been puking drool. It is coming up with a lot of force. I'm not sure what is up with that. I'm watching it to see what is up and if I need to call GI. 
Friday med supply also came. They brought a TON of cut 2x2 pads (we have pads from KangaRoo-tique so we don't need these), a large box of cotton swabs and 3 extension tubes for us to try and the last 5 bags we are allotted for the month. Other then the 5 bags, I'm not seeing the need for many of these things...
I want to thank some amazing people for there help last week. First, my mom for all of her help! She came the first night and brought me dinner and helped give Jillian a bath. She brought me dinner each night in the hospital! Thank you to Dan for searching the house for bear even though it was in the car :) It is a true friend to turn a house over for a little girl's bear. Thank you to all of the people for the phone calls and texts and facebook messages of support. They mean a lot!

I'll update about our weekend later. Right now I have a little girl who has only taken a few little naps today so she it sleepy and a house that NEEDS work because in the last two weeks we have only been home a couple of days so it has been the dump and run. Goal of the week: find this house again while Jillian heals!