Christmas round 2 and Broncoscopy

Ok, Im going to go a little backwards here. I am going to talk about today first (Monday) and then go back to Sunday.

We got up nice and early this morning and loaded up the car for Children's. Jillian did not love getting up early this morning. We headed for Milwaukee and we got up their early and went to Starbucks for breakfast. Brent and I like to caffeine up before long days at the hospital.
We got to the hospital around 7:30am and got a prime parking spot. We headed over to 4th floor day surgery. It was very quiet in there. We checked in and after a few minutes of her trying to eat my coat we were called back to the same pre-op room as we were in for her first surgery in July.
They started with her med list that for some reason we can not get right in the computer right now.... We got her vitals while the different doctors and nurses came in and out to talk to us. The anesthesiologist came in to talk to us about the risks. I don't think he was expecting people that were so calm. He almost seamed bothered that were so calm. He explained to us that Jillian might need to be admitted and there was a small risk of her ending up in the ICU. We told him we understand that with anything we do with Jillian. He asked if we were sure if we wanted to do this before Christmas with those risks given that we could end up staying for Christmas. I told him we totally understood if we were there for Christmas and we were mentally prepared for it. We truly were prepared for that and it was the least scary part of the procedure. Her procedure was scheduled to start at 9:45 but by 8:50 they were ready and taking her back. She was not sure about the guy taking her back at first but then she was ok with it.
Brent and I then went out to the waiting room. This time we stayed in day surgery. Both of her other surgeries took place on the 3rd floor surgery. We sat in the waiting room. My mom got there about 10 minutes later. While we waited in the waiting room Brent talked with the gas company about fixing their mistake last week. The doctor came out about 30-40 minutes after it started. She said that her nose looked good, a little inflamed but good. She said her cords looked good and did not look floppy like we have thought might have been a problem in the past.
She said they went into her lung and they looked irritated like they were constantly irritated. She said there was also excess fluid in the lungs too. Both indicators that she is possibly aspirating on her bodily secretions all of the time. They took cultures and did a wash of the lower right lobe and took samples of that. They are sending all of the samples to the lab.
After about 10-15 minutes they came and said that one of us could go back and see her. I went back. She was screaming so hard we could hear here from the waiting room. I got back to the room and they were taking the heart monitors off of her. She looked at me and started crying harder. She wanted her mommy. After about 30sec I was able to hold her. I sat down in a chair with her and she curled up and closed her eyes. After a few minutes I could smell poop. I asked the nurse for a diaper and Jillian cried while we changed her. Jillian was doing really well. You could tell her throat was scratchy but she was comfy on my shoulder. A little while later the anesthesiologist came in and said that she was looking great and we would be able to go home today. They then let my mom and Brent come back and they transferred us to a different recovery pod that was our last stop before going home.
We got checked into the next pod and they did vital signs and such. We then cuddled. She went off and on from watching Daniel Tiger and Sophia the First to sleeping. She also hugged her new Doc McStuffins doll that we go for her for today because we are softies. They had us wait for an hour and then they did vitals again and decided that she was looking great and we were free to go. They took off her IV and we capped her ports (they had both ports draining to gravity into a diaper). Brent signed the discharge papers. As we were getting ready to leave the nurse came in with a little pretend camera for Jillian. She said this was the best week of the year to visit the hospital. It made Jillian smile so much to have a new toy. Thank you to whatever random stranger who donated that toy camera. I know a little girl who loves it a lot. It made me smile to see her happy.
The rest of the day she has been so sleepy but is having a hard time taking a nap. She will take a short nap but then wake up and cry/scream. You can tell she is soooooo sleepy. Normally she is in bed by 8pm but tonight she went to sleep around 8 and then woke up screaming about a half hour later and is now playing.
We had multiple things that we were invited to tonight however with it being so cold and Jillian being so sleepy we decided to stay in. When Jillian goes outside in really cold air she starts choking on the air. Strange, I know but that is how she handles it so we try to keep her in cold air as little as possible.

Ok, now lets rewind back to Sunday....

Looking at her new book

Brent got up early and worked on snow blowing for over an hour. We had a lot of snow. We took off for Church. We got there about 20 minutes late because of the slow drive. After church we went to Noddles and Company with my parent's and Brent's grandparents. They are in town right now from Florida. After lunch we went over to Best Buy and helped Brent's grandma pick out an iPad and a case. She has been talking about buying one for months to be able to facetime with Jillian.
Then we headed over to Portrait Innovations to do family pictures with Brent's family. Pictures went fast. Once we were done Brent helped a guy figure out how to tie a bow tie.
We left there and headed home. We called Dan and he put dinner in the oven. We got to the house and worked on getting dinner together. Shortly after we got home Brent's family all joined us to celebrate Christmas. We had dinner and watched the Packer game.
We did gifts. Jillian got a Sofia the First armchair that is her size. She also got a doll stroller and a Sofia movie. As a family we got a years membership to the Milwaukee Zoo. That will be nice because we can stop there for just a little bit if she has an appointment at Children's and it is not a big deal if we only spend a couple of hours at a time. I got my first ever Coach purse. It is a small clutch that is perfect to throw into the diaper bag when I am out with Jillian. Brent got an air compressor for projects around the house.
Overall it was a nice night celebrating. Jillian was so sleepy and by the time everyone left she was headed to bed. Once she was in bed we got the house picked up and the three grown ups hung out for a bit.

Chewing on her new pants

her food bag decorated for today

 So, what do today's rest results mean? Well it means that she is probably aspirating more then we realized. I have been worried about that since she was very tiny. You have always been able to hear her aspirating however no one seamed to believe me because she had one good swallow study.
What do we do now? Well, we find out more on January 6th when we see the pulmonologist again. We are really concerned that they are now going to push for a fundo. That is the surgery that we have been trying to prevent for months. It can make delayed gastric emptying worse and makes it substantially more likely that she will have a tube for the rest of her life. For her digestion track we don't feel a fundo is a good plan but we can keep hurting her lungs. I feel like we are having to chose between two organs. In the battle over stomach vs. lungs, the lungs win. Parents of a one year old should not be having to make the choice of one organ over another. We should not be debating the lesser of the two evils, but I have a feeling that is the choice we are going to be presented with. We always knew there was something going on with the lungs but we just figured it was asthma. Even though I knew this was what the doctor thought was going on, it is still hard to realize the facts. It is hard to admit that there is a lung problem bigger then asthma. Asthma I know how to deal with, this has a lot of unknowns to me.
One good thing we did find out today was that her lungs did not look like CF. That has always been in the back of our minds. We will know more definitively once all of the cultures come back but the doctor said that her lungs did not look like CF lungs. That is a large praise.
Tonight I am tired. I am hoping for a good nights sleep. She is having a hard time tonight at going to bed but I am hopeful that once she really goes to sleep and we start draining her tummy that she will get the rest she needs.
For the next few days I am going to focus on baby Jesus and family. I have always been a family person but this year has brought me even closer to them. This year has brought me to lessons from God that I did not even know existed. I have been stretched in ways that I did not know possible. I can't say that I have always made the best choices this year. I have not always used the right words, had the kindest thoughts, been the most loving but God is teaching me about all of these things; in my life He is using Jillian to teach many of these things. She is one cute vestal of God! The next couple of days I hope to take it slow, enjoy family, and most of all praise the God that has held us though this past year and will continue to hold us for the rest of our days.

Pushing her new stroller

In her new Sofia chair

We stopped at Starbucks before the hospital today so we could get caffeine and she could watch the business people walk in and out.

Grandma holding her

Cuddling with mommy

Watching Danial Tiger

Opening her birthday gift from Rasa

The new toy that the hospital gave her. THANK YOU to everyone who donates to the hospital. It really impacts families!

Doc McStuffins went into the OR with her so she got a name badge too!

Her trying to buckle her new bed

weekend fun and surgery follow-up

Friday night was kinda a chill night at home. We just hung out together. Saturday morning we got up and Brent got an email for a sale on jeans at Old Navy and I was in need of some. We quick got ready and headed to the store. After we came home and went over to our neighbor's party. Saturday/Sunday morning night Brent picked Dan up once he got back from his mission trip in Honduras. Sunday we went to Church and got to celebrate my cousin getting baptized. We then grabbed lunch quick, met with our awesome insurance guy and went to Carters. My mom and I ran to Target and Brent got corn. We had a yummy corn dinner (ok there was other foods too). We then headed home.
Friday Jillian almost flipped herself out of her rock-n-play so we decided it was time to move her out of it. Saturday morning we stopped at Bed, Bath and Beyond and bought an adult wedge pillow to put under her bed. Monday a bought a crib wedge to put at the foot of the bed because she was slidding down so much. It is helping but has not fixed the problem. Still thinking on that one...

Monday morning we went to the daycare to teach her teachers how to use her new pump. We figured out that when you turn off an Infinity pump and turn it back on it does not restart the feed. Once I figured this out and fixed it, the pump does not error at me in the middle of the night. The little quarks.

Yup, I eat giraffe

Monday afternoon we had a visit with the surgeon who placed her tube. She weighed 20lb 3oz with clothes and wet diaper. The med student then came in and looked at her site. The said out way of securing the tube was creative but works well. The surgeon then came in. He looked at it and said it was beautiful and that he was turning her tube care back over to GI. He said that she could switch over to a button style tube (less bulky) in two weeks. I was excited ny that because it is sooner then i thought it would happen! He said we did not need to see him again unless we decided to do the fundo someday. 

I did notice a poster in the room that advertised that they switched over to AMT buttons. AMT just came out with a cool new GJ button and from what I have read people are really liking it. Maybe they will have it and Jillian can try it out. 

Saturday afternoon I got a super sweet letter in the mail. It has been a while since I have gotten hand written mail land it was kinda fun! And it was so kind. It made my heart smile. 

Jillian is glad to have her uncle Dan home. She likes to smile at him. 

Monday night we had dinner with our gang:) It makes Jillian so happy to be around so many people that love her. While we are I let her play with a baby spoon. Even though she does not eat, I still want her to experience what it is.

For SPOON!

Sunday we I was blessed by talking to someone at church who has been so encouraging to me. I have been able to bouncy things off of her about feeding therapy and she is such a blessing to us. God uses twist and turn circumstances to bless His name and help us. Sometimes it is just crazy how it all works together. 

Well Jillian is sleeping and I need to also. School is starting soon so this is my busy time. Brent has a crazy project at work and is working a lot of hours.

Chilling in the stroller in Lake Geneva

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!

July 19th, 2013

Whirl wind day 2!

Jillian did not sleep well the night of the 18th. Doctors started coming in around 6:45am. They checker her out and looked in her ears. She still had so much wax they could not really see in them, but she hated them touching them...
Rounds happened mid morning and Dr. Adrian Miranda was the floor doctor right now. I liked him a lot because he really seamed to know his stuff. Rounds to me is kinda funny because it is interesting to watch the residents report to the attending. The current resident was timid and did not look at Jillian's case too much before rounds so I helped him out. The attending asked some questions about Jillian. I explained that she pukes hours after she eats sometimes and I finally had a good conversation with someone about the possibility of delayed gastric emptying. We talked about the Fundo option that surgery had brought up the day before. The GI dr was on the same page as I was about it. He said we know the J feeds work so lets let he get bigger and figure a few things out before we do that. He took it as a teaching moment for the students. He asked what at the three main times you dont want to do a fundo, they did not know so he helped them: 1. if they have cp (Jillian does not), if they have a mitochondrial disorder (we still have not ruled that out), or if there is anything neurological going on (we go for an EEG on wednesday). That puts her 2 strikes down. He said that if the later two end up to be true of Jillian and we did a fundo that puts her at high risk of it failing or her getting gas bloat syndrome. Gas Bloat has a lot of complications with it! It means all the extra gas builds in the stomach making no room for food and a lot of pain. He said it is a nasty disorder that is painful to watch. Right now I feel like with all the unknowns of Jillian we are not ready to take that risk when we have something that works. 
We talked a little bit about her vomit. She can eat something and puke it many hours later. The dr said that 1/2 of you food should be digested out of your stomach an hour after you eat it and she should not have any to come back that much later. We talked a little bit about delayed gastric emptying (another reason to not do a fundo) and what we would need to do to check for that. We decided that at somepoint we should test for that.
We then talked about the test scheduled for the day: the PH study. He asked the team why you do a PH study. They said to see reflux. He said that with Jillian's case we know there is reflux. He talked about the reasons why a ph test is best and that for Jillian it is fine to give us some baseline numbers but that it would not really tell us anything but since we were stuck there anyhow we might as well do it.
We hung out for a little bit and then someone came in to place the ph probe. It is kinda like an NG tube with sensors. As she was telling us about it the attending GI walked in. It seams that she was trying to do the test out of the way of prodacall and there was a little tension in the room them. His partner left the room, came back into the room, the two doctors then left and the first woman continued. Then they came back in the room and asked to speak to the woman. During this time the woman from Child Life came in and asked if we needed anything for Jillian and said that we had made a good job making the hospital room like home. She left and my in-laws came in to visit. Then the doctors and the woman came back in and explained that they would not be doing the test because we would be sitting in the hospital just for the test and keeping her on IV fluid when she did not need to be and that they would be placing the NJ back in and we would be going home. I have a feeling they figured out during that time that Jillian would not fit into the OR schedule that day. Also, the hospital does not place NJ tube on the weekend so if we did the ph test Jillian could not get the NJ tube put back in until after the test was done. Well the test takes 24hrs and that would have made it done part way into Saturday. We would have then had to keep her in the hospital on IV fluids until Monday. We decided since the test was not a big deal to not bother.
Around lunch time they came and got Jillian to place the tube in intervantional radiology again. Jillian was not  a happy person about having it placed again and was very crabby. We took her up to the room and brent went to get food from the cafeteria. She and I were on the floor playing while I ate my lunch and in one fell swoop she pulled  the tube part way out and shoved it back in. I called for the nurse. The nurse and a med student walked in the at same time. The nurse started helping and the med student had come in to see about discharging us be decided that we needed to go back down to make sure the tube was still in a good place. About 40 min later we went back down. Jillian had actually pushed it into a better place then it was before!
We went back up and the dr came in and asked what we needed to go home. I said I wanted to make sure the tube worked before we left, have her ears checked again and talk to the surgeon. She looked in her ears and said they were still too full to see anything. She said we could do a tube try for a bit and agreed that was a good plan and said that she was not sure if the surgeon would have time for us but that if her did not she would have him call us.

We got the tube set up and then we packed up and started to get ready to leave. We where just about to sign the discharge papers when the surgeon came in. We talked about the options again. He said that we had two options. To place the GJ tube now, and then do a bunch more tests because he thinks we need to figure more things out, or figure more things out then place the tube.  We said we want the tube placed now. He said he would have his assistant call us monday to set it up. We were then discharged and hit the road.
Overall it was a long day with her. She did not sleep much at night nor during the day. We did have some happy time with her new toy though and she did like not having a tube in her nose. 
Now we wait for the phone call again... I just keep reminding myself the HE must have a plan in all of this timing. There has to be a reason!