Ear puss

Oh Jilli-bean!

So our week started Sunday morning with Jillian waking up having a hard time breathing. See Saturday night she decided that swallowing some bath water was her best plan... it backfired on her Sunday when she was super lethargic and struggling to breath. I stayed home with her while mom and Brent went to Church.
Monday morning she was doing better. We did a few nebs during the day. Working hard in PT and talking in speech made her start to cough more, but overall she had a much better day then Sunday.
Tuesday we still did a few nebs during the day but her day was ok. She a was a little off in speech but still did fine.
Wednesday I had to work all day because there was parent/teacher conferences. Brent came to the daycare after work to work on a computer. He and Jillian hung out until I was done working and then we went over to Pizza Ranch for dinner. Jillian was a little crabby but she was out of her routine. I looked at her ear during dinner and it looked like she had dried blood in her ear. I figured I would look at it better at home.
The drive from Pizza Ranch to our house (about a half hour) was a VERY long drive home. She varied between, screaming, coughing and choking. We got home and she was still really crabby. I looked at her ear and it looked like a large chunk of ear wax. Brent got a warm wet washcloth and we got the big chunk to come off. Behind the big chunk all you could see was white puss. You could not even see into the ear at all. We still had drops from when she got her ear tubes put in but they were not going to work because 1. you could not even get the drops in her ears because of all of the wax and puss 2. the container of ear drops formed a hard crust on the top of it and you could not get any drops out.
She was in so much pain when I put her to bed that I ended up giving her some Tylenol so she could get some relief from the pain so she could sleep. That is super rare. This is the same child who pops teethe and we dont really notice because she just deals with the pain.
This morning her ears still looked really yucky. I was able to get her an afternoon dr appointment.
We went in. Her temp was normal. Her one ear had so much build up again on the outside that they could not look at it. The other one they looked at and it was full of puss and junk. They cleaned up the outside of the one ear so they could look at it and it was full of puss too. They were not able to see either of the ear drums because the ears were so infected. They said that giving her ear drops was not doing to work because you could not get them in her ear. It was decided that the best choice would be to give her antibiotics in her tube to help her.
So here is to hoping the meds help her and her ears clear up. Ear issues just add to some of the things that she struggles with (balance, speech, ect.) but during this all she has been such a trooper!

Pictures of this week:

She gave George a neb too

Taking a neb with George

Falling asleep while taking a neb

The oxygen ween off

I will admit, the past two days have felt like forever but are a blur.

Monday morning I got up around 5 to a Jillian who had taken off her o2 and her stats were dropping. I got the oxygen back on her and her numbers went back up. After that little event I was up for the day. Brent got up for the day and got ready for work. Around 6:30 the first resident was in. He listened to her while she slept and said that her lungs sounded the same as the day before. He said that we would have to see how the day went.
Over the next two hours we were able to slowly bump down her need for oxygen. Off of oxygen her pulse ox hung out around 95. Every once and a while it would drop down into the 80's but it bounced back quickly. She did not wake up until after 9am. Mid morning my mom got there to help me out.
Around 10:15 we were greeted with a room full of gowned up people for rounds. They said we would see how the day went and that there was a chance that later in the day we could go home.
During the night Jillian had not peed. This is not normal for Jillian. She is know to soak through overnight diapers if she is in them for more then 8 hours. By morning she was bloated. She had little sausage fingers and her cheeks were full. She looked like a chipmunk. By late morning she finally started to pee. She gave us one good diaper yesterday and then the rest were so so. She pooped once yesterday too. She had not done that in a couple of days. It smelt awful! My nose was plugged and I could still smell it.   
As the day went on her numbers continued to hang out it the mid 90's. The doctors said that they wanted her to take a good nap before we could leave so that they could make sure she could keep her stats up while asleep. Jillian however was not interested in napping most of the day. We finally got her to sleep around 3pm. She was able to hold her stats in the low 90's while asleep but was retracting a lot.
Around 4pm the resident came in again and said that since she did not need oxygen anymore, and we know how to do all the other respiratory things, that she could go home. I have to admit I was a little scared to take her home. After how fast she got bad, and the fact that she was still retracting and sounding like Darth Vader, I was nervous. I knew that once we got her home we would not be able to suction her as well as we could at the hospital and that suctioning was really helping her. I took a leap of faith and signed the discharge papers.
Mom and I packed up all of our things, they suctioned her really good one last time, and then we headed home. Once we got to the end of the skywalk mom went out to get the car and Jillian and I waited inside by all the wheelchairs. A doctor that we had when we were in a couple of weeks ago on the 11th floor (and over a year ago), was leaving. She noticed Jilli and stopped to say hi. I told her we were glad to be going home. She looked at me surprised and asked if we had just been in again. I told her what had happened over the previous 24 hours. She said she was glad that Jilli was getting to go home again. Once Jillian got home she wanted to touch all of her toys. It was like she needed to make sure none of them had run away while she was gone. It was cute.
Today she is still retracting some, especially when she sleeps. She still sounds a little like Darth Vader. You can tell where Jilli is right now... just follow the breathing. I am still suctioning her nose. She wants the end to go in her mouth and not her nose so she keeps getting mad. She is so goofy sometimes. Right now she is asleep on my chest. It is hard to explain to a 15mo old that they need to pace themselves. She will want to play and do things and then just crash. She will slowly build up to being her bouncy self again.

While we were in the hospital we talked about how her ped wanted us to see genetics again so that we could try to figure out why Jillian gets so sick. I called central scheduling Friday and they said that genetics is reworking their schedule and they would leave a message that I would like an appointment. The doctors inpatient said they would try to help us get an appointment quicker. They called and got the same answer and left a message that someone really needs to call us. Hopefully between me calling, GI making a referral and the floor doctor calling, we will get an appointment set up.
Yesterday I also got a call from the GI clinic about her repeat of the PH probe test. They wanted to do it on April 8th, however I got them to agree to do it April 10th because then we have the weekend for her to bounce back after the test so I will only need to take 2 days off of work that week instead of more. I try hard to take as few days off as possible,  but it is hard with Jilli.
Jillian's ped also called me in the morning yesterday after she got into work and got a note saying she had been in the ER on Sunday. She called to see what was going on. I love that her ped is so concerned about her and calls me as soon as she finds out something is wrong so that she can be a part of the team. She brought up the fact that Jillian got a shot last Wednesday. She said that scientifically Jillian should not be getting sick a few days after getting a shot but it just keeps happening and that we cant ignore that. She said that the goal for right then was to getting Jillian better but that we would talk more once Jillian was out. She said that she wanted Jillian to see her after she got out and to give Jillian a big hug from her. 
Birth to 3 also called while we were there and set up the appointment to do her eval. They are going to come at the end of this week while she is home to observe her. While Jillian is not functioning currently at 100% go mode, I think she will still show them enough so they can make a plan. Most of those eval visits have just been a lot of me talking to them anyhow so she can just sit and cuddle while we take care of all that stuff.

Thank you for all of the prayers the past few days. They were greatly appreciate! We go to see her ped tomorrow at 10:30. I'll update again after that.

This is how Jillian lays while in an elevated crib

Looking at her friends with grandma

Reading a book. This is one of her favorite things to do

Look! i figured out how to get my gown off!

And your welcome home gift is.... a neb!

Look at her new dino mask her daddy got for her.

The January Sickness

The house has been hit by a bug. A coughing, sneezing, yucky bug!

Last Tuesday night it all started. Jillian would lay down, fall asleep for 10-15min and then wake up screaming. We did this until 12:30am. (It started around 10pm). We had no idea why she was screaming but with some Tylenol she finally slept for longer then 15min but was still up multiple times during the night.
Wednesday she was not herself. She just kinda sat at school all day. She did not do much. By the time we got home she had a 99.8 temp. The night started the same way. She would lay down, fall asleep for a little bit and then scream. Again the only way we got her to sleep was with Tylenol.
By Thursday morning she had a 100.3 temp so Brent stayed home with her. During the day she vomited 7x. We are not talking about a little spit up here. No we are talking about forcefully puking that starts with coughing... then starts gagging... then forcefully vomiting.... and ending with more coughing. We are talking about over 2+ ounces at a time. You can her her breathing in while vomiting, which is how she gets aspiration pneumonia. Now what does a child who has nothing in their stomach vomit? Well, a lovely mixture of stomach acid, liver bile and mucus. Her stomach can't handle anything in it. When she gets sick she gets mucus that drains into her tummy just like everyone else. The difference is that most other people can handle the mucus, but she can't so she vomits everywhere. Her lungs are also filling with mucus and she vomits (just like I did when I was little) to get the mucus out. This is making for a lot of vomit right now. She normally spends a good amount of time during her day swallowing reflux of stomach juices but at this point she is normally able to keep it in. By the time she went to bed on Thursday she vomited 3 more times.
Friday morning stated with vomit around 4am. Uncle Dan was able to work from home and take care of her. I was able to get off of work around 12:30 and come home. While Dan and Jilli were home in the morning I got to use my Christmas gift that Dan bought me... a house cleaner for a few hours to deep clean the house! When I got home I took over taking care of Jillian and she and I hung out. I was not feeling great with a runny nose and she was just exhausted. It was really good that I was home because during the afternoon I passed an ovarian cyst and had a hard time doing much.  She continued puking and needing nebs through the day. Her temp got up to 101.1 during the day but by night it had dropped. She also started to refuse her oral meds on Friday. She would clamp her lips shut and try to slap the syringe away. Most of the time when we would give her a med she would vomit. Sometimes right way and other times up to a 1/2 hour later.
Saturday morning started with 4am puking again. We all slept in a little and then got up and got a few things done. In the afternoon she purked up and was acting more like herself, although still vomiting and refusing some of her meds.  We were hopeful that the worst was over.
Sunday morning started the same with vomit around 4am. Brent had to be to Church early and Jilli and I were at my parent's house. She was still puking and pushing meds away. We were still doing nebs every 4 hours. We decided that it was time that she was seen. Mom and I took her to the Children's walk-in clinic on Mooreland road. We got there right as they opened at 11 and we are lucky we did . By the time we were walking into a room they were telling the people that were walking in that it was over an hour wait before they would be taken to a room! We did her weight which was off because she had all of her clothes on. I kinda wish I had made them do an accurate weight because I feel like she has lost weight in this sickness. We went to the room and the nurse did her vitals and her history. Her pulse ox was around 92. That is not where they want it. The nurse went out and I could hear her talking with the doctor. The doctor ordered a chest x-ray and a neb before she walked in the room so we could get those done as soon as she was done listening to her. She came in and listened to her lungs. She said that you could hear wheezing from her one lung and the other one was rattly. She left the room and the nurse came back in with the neb. As soon a the neb was finished someone from x-ray was there. Jillian hated getting the x-ray done. We walked into the room and she took one look at the machine and started to scream. I think she associates x-rays with tube changes because she normally grabs onto her tube and screams. The rooms do look similar. We got back to the room and her pulse ox was still only at 93 so they did another neb. The doctor also ordered some Prednisone  to help with her lungs. A while later her pulse ox was back to around 91. Then she started to do the cough.. gag.. and then she vomited everywhere. Once she was done vomiting her pulse ox went up to 96 so they said we could go home. The doctor said the x-ray was cloudy but not pneumonia, just and upper respiratory infection. They also put her on an antibiotic for an ear infection. We left and mom brought Jillian and I back to our house. That evening my mom came back and we all had dinner together and mom spent the night.
Monday morning started the same with vomiting around 4am. My mom had the day off because of the holiday so she hung out with Jillian and Brent and I went to work. She slept really late and continued to need nebs every 4 hours however she was not puking as often. By the time I got home from work she was in a good mood and playing. I was hoping that all the meds had kicked in and she was really doing better. She even managed to unsnap her pajamas, pull her tube out of her clothes, open the g port and was chewing on the J port. It was hard to get her to sleep but by 9:30 she was out. I hooked up her pump and gave her a neb at 10pm. I could smell that she had pooped s I changed her, did her meds and she went back to bed.
Tuesday morning started out the SAME way with coughing and puking around 4am. Have I mention that 4am and I are NOT friends right now. Luckily I got up to her coughing and was able to catch what came out. Brent gave her a neb ad we watched some Full House while we tried to get her back to bed.
This morning when I got her up she had pooped everywhere. Then I went upstairs to get her drainage bag and somehow during the night it sprang and leak at the bottom so there was next to nothing in the bag but the floor was soaked. I looked over at her at one point this morning and noticed her g port was open and the little silicone piece that holds the cap on is hanging by a thread. Luckily we get that changed on Friday, so until then it is taped. A little while later she was sitting on the floor and all the sudden a volcano of poop starts flowing out of the top of her pants. Right now her poop is lovely with all of the mucus. Needless to say it has been eventful around here today.
She is in a good mood today and will play for a while and then just get so winded from playing and will just have to sit and breathe for a while. You can still hear her breathing across the room. Right now she is taking a nap and she keeps squeaking while breathing.

Her doctor's office called me on Monday because they had gotten a report that we had been at Children's and wanted to know what was going on. I filled them in. They called me back a while later and said that the doctor wants to stop doing any shots for a while since she always seams to get really sick after. It is like her body cant handle the knock in immunity so then she gets every little thing and they really kick her butt.

Right now I am not sure of the coarse of this illness. I feel like one moment she is starting to act more like herself and then the next she is crashing again. I think if she is still not doing better by tomorrow she will need to go see a doctor again because at that point she will have been on steroids and antibiotics for 4 days. We are trying to be patient and wait this out but we don't want this sickness to get out of hand. So we will see what tomorrow brings and just hope that we sleep past 4am...

Just so exhausted

I'm sleepy

Cinderella Baby is good for keeping company during nebs

The boys holding her over the sink while she vomits. She vomited through the dish towels I was holding so this was the next closes thing

The walk-in gave her a backpack full of books that someone donated!

Her current meds minus the one she had already taken

Yup, thats poop

Mom... do you have to take my picture now!

"Wow, you all have had a holiday week..."

Lets back up a little bit here. We are going to take this week day by day:
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.

sniffle sniffle

Jillian has a gross nose today! It is not a constant run but instead sneezes with a massive mess. Yesterday she was pulling at her right ear a lot. She has just been off today. We went to Target tonight and she did not smile for anything. Not even the Cinderella Little People which she normally lights up for. She was crying when going to bed too, which is something that is super rare for her.
Is it bad that when Jillian gets a cold I start thinking the worse and preparing for problems. Maybe it is her track record. Hoping this running nose just stays that. There is always hope.
Today she has also been attached to her passy. When she has sinus drainage it seams to slow her gastric emptying and she spends the whole day puking mucus into her mouth. Luckily so far today she had been able to keep in in her mouth and swallow it back down.

Last night Brent was in a very minor car accident. No one was hurt and they were going less then 5mph. He stepped on his breaks and nothing happened and ended up rear ending the car in front of him. There was no damage on either car. Today we took the car to a local mechanic. The figured out that it was the breaks that needed to be replaced. They were working on that today and we will be able to pick up the car tomorrow. We are just grateful that no one was hurt and there is no real damage. 

Over the last day our thoughts have been with our "family" at Children's Hospital of Wisconsin with the shooting that occurred there yesterday. Jillian's first two admissions were on the 7th floor (where the shooting occurred) What I can tell you is that some of our favorite people in the hospital are on that floor. They taught us how to do tube feedings and helped us fight for our daughter. What I can tell you as a parent who has spent much time there is that I am sure that everyone did the best they could in the situation at that time. They worked their hardest and tried to do the best for kids because the vast majority of people around there would not know what to do but the best thing for kids. Without a doubt I still feel very safe there. The security guards know Dan by name from him visiting so much when we are there. People make unwise decisions in all sorts of places. Sadly yesterday Children's was the place this person chose. I still trust them with the safety of my baby.

On a happier note, we are getting ready to celebrate Jillian turning 1 in a month! We are so excited to be coming to this day! It has been an interesting journey to get to this point and we want to share this day with all of the people who have supported us. We are having an open house style party on December 14th at our house. We invite anyone who has supported us in any way over the last year to join us in the celebration! This party will be a little bit different then the normal 1st birthday party because, Jillian thinks her normal is more fun! Please join us!

Croup Update

Jillian taking a neb and watching Daniel Tiger

I took Jillian to the dr this afternoon for her followup for croup. First he looked at the report from the walk-in clinic. He said the radiologist's report from the chest x-ray was that the lungs looked the broniolitus or the start of pneumonia but that the neck x-ray looked clear. (the dr there said she noticed narrowing of the throat on the x-ray even though the radiologist did not). He listened to her lungs and said that they sounded good and that we could stop neb treatments. He looked in her ears and had to dig wax out (go figure) and that the one ear looked infected. We decided to just watch it to see if it gets worse. He looked in her mouth and said it does not look like she is currently popping any teeth. He said that if her ear seamed worse to call and that he was the one on call this weekend.
The appointment went relatively smooth. He and I don't always see eye to eye on things, but he is the only ped in the office that works on Fridays and since Jillian has a track record of needing to be seen on Fridays we end up seeing him every so often.
After the appointment we went to Target. I looked at Jillian's passy this morning and there was black gunk in-between the handle and the plastic part. It was quite gross and I'm not sure where it came from so I sanitized it and it was still there. The passy part also filled up with water while cleaning it so I think there was a hole in it somewhere so it found it's new home... the trash can! I then searched the house for the spare passy and I did not find it anywhere. Searched high and low. I'm not sure where it went... I had a substitute passy that neither of us really likes but it worked as a place holder. It was probably time for the next size passy anyhow.  

sporting her feeding pump backpack

Jillian's new pump has not learned that I'm boss yet. I'm not sure if we have not figured it out right yet or what. It has woken me up every night since we switched to it with some kind of error that is magically "fixed" by me just hitting run twice. It is not even at the same time of night. It also likes to say that a feeding is done after 3.5 hours when the pump is set for 52ml/hr and a volume of 208ml. That would mean 4 hours of food is in there. On top of it sometimes there is food left in the bag (sometimes as much as 50ml) and other times the bag is empty. We have not changed our measuring methods since switching to the new pump so we know it is the correct amount of food in the bag. I am giving it this weekend to figure it's self out or I'm calling med supply on Monday. I love how little the pump is. Jillian can wear the backpack and she looks so proud. It can be tipped to so when Jillian manages to get her hands on the pump bag it is not as big of a deal. But this accuracy thing is making me second guess it. We will see.
I am also trying to see if we can get Jillian to not poop an explosion every time she poops. If she gets less then 2ml of lactulose a day she does not poop, however with 2ml it is coming out like its a volcano and up her back and on her clothes. I am trying for the weekend doing 1.5ml twice a day to see if that evens things out. We will see. It is the Jilli balance!
Jillian is also working hard to figure out how to crawl. She can scoot on her butt reaching for toys. This does not get her anywhere quickly but she does move. Watch out world! It think it is only a matter of time before she figures out how to take off. I think I will be spending some time on Saturday baby proofing the house and when I am in Milwaukee next week for one of her appointments I think I will be stopping at the mega Babies R Us to pick up a few baby gates. The house will now look more like she owns the place :)

seams she likes her new passy enough to fall asleep on a monkey!

80th birthday to the little stinker!

I am going to rewind a little bit in this blog post first because I want to make sure that I get in all the stuff about our weekend, so if you are looking for the Jillian hospital update it is a little farther down in this post.

We got out of the hospital at rush hour on Friday (best time to leave the north side of Milwaukee and go to the south! lol). We went to my parents and had dinner with my dad. My dad and I went over to my aunt's house to see my grandma and the rest of my family. My great uncle Bill was there from Indiana and we had not seen him since my wedding and my aunt and uncle where there from out state also. We visited for a little bit and then went back to the house to pick up Brent and Jillian and head to the airport to pick up my mom. We picked her up on the curbside and headed back to their house. Brent went to bed when  we got home but Jillian wanted to stay up and see her grandma. She even gave her a gift of a blow out diaper! We got to bed kinda late.
Saturday morning we cleaned around mom and dad's house and the boys went to Sam's club and got my tires rotated and picked up food. Mom, Jillian and I went to Goodwill, JC Penny and Target. By the time we were done shopping it was time to go back to the house for dinner. My grandma, Uncle Bill, Aunt Terri, and Uncle Scott came over and we cooked out. It was really cool to get to ask my uncle Bill questions about family history. He is a really smart guy! After they all left we hung out for a bit and then went to bed.
Sunday we got up early and went to first service. After church we had a group picture. Then we stopped at my parent's house to pick some things up.

Dad and Brent headed over to the restaurant where we had my grandmother's surprise 80th birthday party. Mom and I stopped at a rummage sale by their house that had a lot of kids stuff. We got Jillian some clothes, toys and a 6 sided gate to play in. We then stopped back at mom and dad's to get a power cord and then we joined them at the restaurant. Some of my family was there setting up. When we got there we had a surprise! Two of my great aunts came into town for the party and we did not know they were coming. They loved meeting Jillian. Set up finished and then the people started to arrive. Mom and I help direct people since there were two parties going on.
My grandma got there and was so surprised! It was really nice to see so many people that love her because she is a wonderful person! We ate and I think I got the best seat in the house. Across from me was my great uncle Bill, on my left was my cousin Sam and on the other side was my cousin Delana. My grandparents and my aunts and uncles were all around me. Jillian took a nap during the meal. My cousins and I severed the cake. Once most of the people had left we took pictures.
Mom, Jillian and I went back to the house so I could pump and to change clothes. We then headed back to the restaurant where everyone was having drinks at the bar. We hung out for a bit and then everyone left. We went back to mom and dads to pack up and went to Penara Bread for dinner on our way out of town.
We got home to the sound of music. We did not move in until August last year so we had no idea how close we live to County Thunder. It is just a few miles down the road and you can head it clearly outside and can hear it muffled inside over the TV.

Monday Jillian had a doctors appointment with her ped as a follow up for her ears. The ped ended up digging out ear wax. Jillian has her momma's ears. I have always been able to impress with the amount of ear wax I have and Jillian has the same talent!
In the evening Jaime and Jason came over for my birthday dinner! Jaime blessed us by cooking a yummy dinner and making a coffee pie for dessert! It was so nice to get to talk and be encouraged by friends. They are so good at pointing us back to God. We feel so blessed to have them!
Tuesday morning Jillian and I had a slow morning. I was slowly getting things done but Jilli was in a cuddling mood. I put Jillian on her blanket on the floor to play so I could eat lunch. I microwaved leftover pancakes and sat down on the floor next to her. I looked down and was cutting my pancake and heard the noise that makes us move fast. It is the gag/cough noise of the tube moving. I look over at her and she is holding the end of the tube that was just in her intestines in her hand. AHHH! The pump was still running so mil was coming onto the floor. I shut that off and got the rest of her tape off. I called the hospital and left a message for GI. 2 hours later no one had called me back so I called again. They paged a nurse and she called me back about 20 min later. She said she would talk to the dr and the surgery department and come up with a plan but to make sure our bags where packed. She called me back about 10 min later and said they were just going to admit her on the surgical floor and put in an IV until surgery. I loaded up the car and took off.

We came in and I got a 10 parking spot (funny how good of a spot you get around 5pm). As we were coming up the skywalk her GI dr was leaving. We talked for a while in the Skywalk about the last time she was in. She said she was on the for the week so she would be seeing us.
We then went down the registration and checked in. They asked if we needed someone to show us up to the 9th floor and I said I knew where we were going. We came up to the floor and got a room. The nurse showed us around (the floor is identical to 11). My mom came up and we hung out with Jillian and watched the school board meeting (its always fun to watch people bad mouth your mother on TV). Her room this time has a bath tub (she has always had showers in the bathroom... ) so we filled up the tub and gave her bath. She LOVED it :) Brent then got here. After her bath two nurses came up from the NICU to put Jillian's IV in. It was now after 10pm and she had not eaten since 1 so she was dehydrated. They first tried both of her feet and it did not work. As a last resort they tried her wrist. Luckily that worked because I don't know what they would have done if it did not work. My mom then headed home and we went to bed. She slept well and only woke up when they did vitals.

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!

Whirl wind!

I woke up Thursday morning to Brent making me chocolate chip pancakes that were shaped like Mickey!They where so yummy. We talked to a few people on the phone and finished packing up all of our stuff.
We took off for the zoo around 9. We stopped on the way to get gas and sunscreen (I forgot to pack that... ops!) As we were driving I kept getting a whiff of poop...
We got to the zoo around 10:30. We took Jillian out of her carseat to put her in the stroller and she had poop to her hair. After cleaning her up we sunscreened her up and went into the zoo. First we visited the penguins and then we went to the ape house. Jillian liked watching the monkeys jump around! Next we walked down to the animal hospital and looked around and showed Jillian that the animals do some crazy things too! We then took off to the reptile house. She loved the fish and snakes. She thought they where funny!

We went by the giraffes and Jillian took a nap while we ate our lunch of lunchables! We woke Jillian up and took her by the giraffes. They were all the way in the back of their cage and Jillian was not able to focus on them. We went to see the elephants and the big cats. She liked the jaguars because they were jumping all around. They liked looking at her too. We went by the elephants, had a fresh squeezed lemonade and then back by the giraffe and made her a mold-a-giraffe. We went over to the kangaroos and she was getting sleepy again. We stopped in the gift shop (that was too overpriced for me!) and then headed back to the car.
We stopped at Starbucks for my free birthday drink and Best Buy for a new phone charger. We then headed to the hospital. Our parking spot rated a 7 out of 10, lol! We checked in at the skywalk and they told us to go to admitting. They got us checked in and gave Jillian a handmade blanket! We then headed up to 4th floor day surgery.

They told us to have a seat and then her doctor came over all scrubbed up. She said she was glad she found us because a hospital policy changed and she might not be able to do the surgery but she would let us know. We were so confused about what was happening. Then the receptionist took us back to a room.
The doctor came in and said that in the past week the policy changed and they no longer place tubes in the surgical department but now in interventional radiology.  She said that if Jillian was in desperate need for the surgery they could do it right away but that Jillian fell into the gray zone. She said she was really sorry for the inconvenience and that she would go and work on getting us an appointment as soon as she could for IR to do the procedure. She came back in and said that they could not get us in for Friday and the soonest they could do was Monday so they where going to have to send us home. She said to wait there and she would check to see if they could get us meal tickets for our inconvenience. The doctor then came in again and asked when Jillian had eaten last (1:30 like they told us) and she said she decided that she was going to go ahead with the surgery! It was then a race to get all of the vitals and check in stuff done.
They then took us down to the 3rd floor general surgery because day surgery closes at 5. We went into a holding room and each of the doctors came in and talked to us. They gave her Versed and she became like a newborn again. It was kinda funny. Then the anesthesiologist  came in and carried her into the room. It is so hard watching your baby go through a set a double doors that you are not able to go into. We then headed into the waiting room.

After a while the GI doctor came in and asked to speak to us in a separate room. She that that the biopsy went fine and they got a lot of samples. She said the Jillian has a Hiatal Hernia. She said they went to place the tube but they could not find a good place because of her stomach and the surgeon did not feel it was safe to continue surgery so they stopped. She said we were being admitted and we would figure out what to do next since Jillian had no tube at all. We went back to the waiting room again.
A nurse came to get us. She said Jillian wanted us NOW and was screaming. We walked into the recovery room (Jillian was the only one) and the gave Jillian to me and she curled up on my shoulder and went to sleep. The anesthesiologist told us that she did great but she can pack a punch (I have been known to get violent going in and coming out of anesthetic). The surgeon then came by and said that he could not get a good enough view to continue, and that he felt like if he cut then it would not have been safe and he wanted to do the best thing for Jillian and did not want to put her in danger. We thanked him for looking out for her. We then talked about our options.  We can do the surgery a different way where surgeons place the tube with multiple incisions or there is the option of altering the anatomy of her stomach. We currently feel like we do not know enough about what is going on with Jillian to alter her in a way that cannot be undone.

They then got us a room on the 11th floor in the exact same room as last time. It was after 7pm at this point and we got some dinner. Jillian was going between sleepy and fussy because they pumped a lot of gas into her and it was coming out. We put Jillian to bed around 10 and by 11 she was up screaming again. The night was long with little sleep because she was up crying a lot.
This morning we have seen a few doctors. While we are here and she is tube and food free we are going to do the PH probe study. It is a 24hr long test and will tell us how much reflux she is having. To do this test they have taken her off all of her acid reflux meds. This was hard for her last night because she LOVES her pink medicine and I think she is more upset about no pink meds then not eating. The probe is to be place sometime today and she will have to be on IV fluid during that time.
Surgery is also going to come in and talk to us today and come up with a plan. I will update once we fingure out what is going on there.
We are also working on figuring out if Jillian currently has a ear infection. She has so much ear wax they cant see her ear drum so they are putting drops in to "eat" the wax so we can figure out what is going on. She is pulling at her ear a lot today.
She is still fussy today. She did spend a 1/2hr today playing with the new toy we got her for the hospital. She is very sleepy from last night and she still has gas.

We will see what today brings!