Monday: Monday was full of screaming and puking. I called GI in the morning like the walk-in clinic said. They informed me that the dr was not in and they wanted me to call the ped office. The ped was able to get us in after lunch. She looked Jillian over up and down. She said her ears looked great and that her lungs were good. She said her belly felt soft. I played her a clip of what her cough sounded like. She said that was croup. She told us to use some Vicks vapor rub and to do nebs as needed to help her. We talked about the constipation and she told me to call GI and see if we could add free water to her tube because extra fluid can help with constipation. (free water= plain water pushed through the tube for the purpose of hydration). We left the dr office and headed home. Jilli still screamed off and on. In the afternoon the Dietition called. She said she got Jillian's weight from Monday and she still gained more weight then wanted so we are dropping her down to 17hr a day and giving her 2-3oz of free water spread throughout the day by flushing her tube with 15ml of water each time we fill her except at 2am. In the evening Jaime and Jason came over even though Jaime is having a lot of back problems right now. For the most part Jillian still just wanted to cuddle.
Tuesday: Tuesday morning started with her trying to puke on me but we made it to work. She was still crabby in the morning. She had a small poop on our way to school and then just a skid mark after that. You could tell she wanted to poop. GI called me to check on her. The GI dr had not been able to talk directly with the nurse but they had messaged back and forth. The dr wanted to wait this out longer because she said it might be a virus. Tuesday night I was packing for us to head to my parents for the holiday weekend. Jillian was in her jumper playing with a board book. I walked into a different room to get something and came back and she had bitten a chunk off the book and was choking. I swiped as much out of her mouth as I could and called for Dan to come help because Brent had run to the store. He grabbed a flash light and was able to see the piece that was still in there. He finger swiped her and got the rest out. Once that was finished Brent got home with the suppository for Jillian. We laid her down on a towel on the hard wood floor and I held her hands, Dan held her legs and Brent put it in. During the next hour we got three small poops...
Wednesday: We went to work. She was less crabby and had a couple small poops. After work we stopped at Target and I got my new pots and pans set since ours was getting yucky and they were on a very good sale. We then headed to dinner with Brent's parents and brother to celebrate Thanksgiving and Brandon's birthday. It was a nice meal and Jillian loved looking at all of the other babies in the restaurant. After dinner we headed to my parents. Our family makes stuffing the night before since we use a meat grinder to put it all together and it takes some time. My grandparents came over and helped. Dad, Brent, and Grammy made stuffing and I helped grandpa do some Christmas shopping.
Thursday: Happy Thanksgiving! In the morning we traced Jillian's hand onto her feeding bag filled with formula and decorated it like a turkey. We shared the photo with our friends over at feeding tube awareness and the photo ended up being spread to multiple other websites. Everyone kept commenting on how cute she was! My mom's side of the family came over for dinner. She loved sitting in her highchair at the table where she could see everyone. After dinner the cousins all played Apples to Apples Disney and Jillian cuddled up with my uncle Paul. After everyone left Brent and I got all of Jillian's things together for the night and my mom, Brent and myself are one of those crazy ones who love to go out Black Friday shopping. We get a lot of great deals but more importantly we have a lot of fun together doing it. With us out shopping that meant my dad and brother would be watching Jillian. They both spend a lot of time with her and know how to do her feeding pump and what goes where. We left Jillian in their capable hands around 9:15 and we headed out. First we stopped at Target, the JC Penny, next was Kohls.
Friday: We stopped at McDonald's around midnight and then headed to the outlet mall. We hit up Shopko and then headed home for a nap and to unload around 2:30am. We got back up at 5am and headed out to Gordmans and the Menards. We went over to Joann Fabrics and my dad called. He said Jillian felt warm and wanted to know where the thermometer was. I let him know and her called back a few minutes later saying she had a 102.1 fever. We left the store and walked over to Big Lots in hope of getting some meds to get her fever to come down but they did not have any so we went over to the grocery store and picked some up. We got to mom and dad's and gave her med and a neb because she was breathing very quickly. After over an hour her fever dropped to 101.5 and she started to perk up a little bit. I started texting with Dan's mom to get her opinion since Jillian had never had a fever like this. By mid afternoon it was creeping up again so I called the nurse practitioner. They said to take her to the ER.
We loaded up our stuff and headed for Children's. They brought her back and started her vitals right away and she had a 103.1 temp. She did have a weight of 10kg... with a wet diaper and winter clothes on, lol! As we were being walked to a room nurses we greeting us... because they knew Jillian. We got into the room and a nurse that we have had before and we like walked in. We explained what was going on. Then a med student walk in and we gave him all of the information. We took one look in her ears and said they were very infected. He looked at her tube site and it looked fine. He listened to her lungs and said they sounded fine, however she had a neb 2hr before. We then started to put her belt and pad back on and before we could her tube site started bleeding. The med student had to grab gaze and hold pressure on it to get it to stop. He then walked out of the room. The nurse came in and gave her a med to take down the fever. We had to put a call into the pharmacy to make sure the med could go into the J port. You never know what meds need to be digested in the stomach until you ask. Brent and my mom then traded spots. The ER now has a new policy that only 2 adults can be in an ER room with a child. I am guessing this is part of their new safety plan since the shooting. The two of them switched places in the room/waiting room multiple times while we were there.
The the attending dr came in. He looked at her ears and listened to her breath. He said her lungs sounded clear but before he left the room she decided to show him some of her fast breathing. Our nurse came in along with a care partner to get a urine sample with a catheter. She tried and tried but could not get it. She left and found another nurse and she tried. They dug and eventually got it. They said that the skin was almost fused together down there making it really difficult. They said that the dr could give us some cream to separate it. A while later the care partner came in and took her temp again and it was 100.8. The dr came in a while later and said we could go home. I double checked with him to make sure the site bleeding was ok and her said yes. I brought up the problem with getting the catheter in and he kinda acted like the nurses did not know what they were talking about. He said we could talk to our dr about it.
The nurse came in with the discharge papers. Once we signed everything she said Jillian hold an award in her book for the most clogged tube. She was our nurse several months ago when her NJ tube clogged on a Sunday morning. We tried and she tried to get it unclogged. The dr walked in there like we were all dumb and tried himself and it splashed all over him. She told us that dr had really needed to be taken down a peg or two that day and Jillian did and and for that she was the talk of the ER. We left Children's and stopped at the pharmacy to pick up her meds.
Saturday: In the morning she was cuddly but by mid day she had perked up and was playing. We thought we had turned the corner. We took her with us to Shopko to pick something up and then we had to stop by my grandparents quick. While we were there she needed anouther neb. Once she was done giving herself a neb she decided that Pooh needed one too. It was cute. We stopped and picked up pizza on the way home and ate as a family. Then we put on Christmas music and decorated the tree. She hung out on the floor watching us. My daddy helped Jillian and I put the star on top. It was overall a lazy day. We did get one really good poop in the morning and she gave grandpa a small poop while she took a bath... just enough to get the water yucky!
Sunday. By the morning she was not breathing well again and her fever was creeping up over 101 with meds again. We decided to keep her home from Church. She and I hung out mom and dad's and she slept. She was awake fore only about a half hour before noon and during that half hour she pooped whenever! I knew she was really not feeling well though because I left her sitting in the living room while I found her clothes and she did not get into anything. After everyone came home from Church we had leftover thanksgiving food and then packed up and came home. My parents came with us and the boys put new insulation over our living room and kitchen. Mom and I cleaned somethings up and put up my Christmas Village. This year I only am putting up a small portion of it, however it is the first year it is going up in our house. Jillian gave us another good poop while mom and dad where here. In the evening Brent headed to Walmart and Dan and I were hanging out with Jillian. She was more or less sitting next to her toys but not doing much. I stood her up behind her walking toy and for the first time ever she pushed it and walked behind it. She is getting so big! In less then 2 weeks she turns 1!
Monday: We were up a lot during the night with her coughing. We gave her a neb in the middle of the night and again at 7:30. Around 8:30 I brought her downstairs by me because she was coughing so much upstairs. She went back to sleep in her chair. Around 9 I took her temp and called the dr office to make sure they wanted us to keep doing what we are doing. They said yes and that it could take until Wednesday for this fever to break. She woke up a little before 9 and I gave her meds and got her dressed. Then she fell back to sleep. It is almost 11am and she is still sleeping. She is very noise too! We will see how to rest of the day goes. Her temp is around 100 degrees on meds.
We are going to have to tag team it this week to keep her home to get healthy. We are short staffed at work right now and I hate leaving them stranded. I feel so bad when I have to call it in and with Jillian I have to call in a lot. Before Jillian I never called into work even if I did not feel great because I hate making everyone else have to work extra to cover for me but Jillian has made me have to put my pride to the side and do what is best for her, and sometimes that really inconvenience others. Until Jillian is fever free without meds she cant be at school so Brent and I will make this work this week, just like many parents have to.
Thank you for all of the prayers on getting Jillian's feeding pump covered. We received a call last week that her pump and bags will be covered 100%! This is huge and takes a large finical concern off of our minds. We are still working to get coverage of the special formula that has to go into her pump. It costs about $15 a day for the special formula. We are asking for prayers that this gets covered soon.
Tuesday: Tuesday morning started with her trying to puke on me but we made it to work. She was still crabby in the morning. She had a small poop on our way to school and then just a skid mark after that. You could tell she wanted to poop. GI called me to check on her. The GI dr had not been able to talk directly with the nurse but they had messaged back and forth. The dr wanted to wait this out longer because she said it might be a virus. Tuesday night I was packing for us to head to my parents for the holiday weekend. Jillian was in her jumper playing with a board book. I walked into a different room to get something and came back and she had bitten a chunk off the book and was choking. I swiped as much out of her mouth as I could and called for Dan to come help because Brent had run to the store. He grabbed a flash light and was able to see the piece that was still in there. He finger swiped her and got the rest out. Once that was finished Brent got home with the suppository for Jillian. We laid her down on a towel on the hard wood floor and I held her hands, Dan held her legs and Brent put it in. During the next hour we got three small poops...
Thursday: Happy Thanksgiving! In the morning we traced Jillian's hand onto her feeding bag filled with formula and decorated it like a turkey. We shared the photo with our friends over at feeding tube awareness and the photo ended up being spread to multiple other websites. Everyone kept commenting on how cute she was! My mom's side of the family came over for dinner. She loved sitting in her highchair at the table where she could see everyone. After dinner the cousins all played Apples to Apples Disney and Jillian cuddled up with my uncle Paul. After everyone left Brent and I got all of Jillian's things together for the night and my mom, Brent and myself are one of those crazy ones who love to go out Black Friday shopping. We get a lot of great deals but more importantly we have a lot of fun together doing it. With us out shopping that meant my dad and brother would be watching Jillian. They both spend a lot of time with her and know how to do her feeding pump and what goes where. We left Jillian in their capable hands around 9:15 and we headed out. First we stopped at Target, the JC Penny, next was Kohls.
Sunday. By the morning she was not breathing well again and her fever was creeping up over 101 with meds again. We decided to keep her home from Church. She and I hung out mom and dad's and she slept. She was awake fore only about a half hour before noon and during that half hour she pooped whenever! I knew she was really not feeling well though because I left her sitting in the living room while I found her clothes and she did not get into anything. After everyone came home from Church we had leftover thanksgiving food and then packed up and came home. My parents came with us and the boys put new insulation over our living room and kitchen. Mom and I cleaned somethings up and put up my Christmas Village. This year I only am putting up a small portion of it, however it is the first year it is going up in our house. Jillian gave us another good poop while mom and dad where here. In the evening Brent headed to Walmart and Dan and I were hanging out with Jillian. She was more or less sitting next to her toys but not doing much. I stood her up behind her walking toy and for the first time ever she pushed it and walked behind it. She is getting so big! In less then 2 weeks she turns 1!
We are going to have to tag team it this week to keep her home to get healthy. We are short staffed at work right now and I hate leaving them stranded. I feel so bad when I have to call it in and with Jillian I have to call in a lot. Before Jillian I never called into work even if I did not feel great because I hate making everyone else have to work extra to cover for me but Jillian has made me have to put my pride to the side and do what is best for her, and sometimes that really inconvenience others. Until Jillian is fever free without meds she cant be at school so Brent and I will make this work this week, just like many parents have to.
Thank you for all of the prayers on getting Jillian's feeding pump covered. We received a call last week that her pump and bags will be covered 100%! This is huge and takes a large finical concern off of our minds. We are still working to get coverage of the special formula that has to go into her pump. It costs about $15 a day for the special formula. We are asking for prayers that this gets covered soon. 
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