Pulmonology

Yesterday we took a trip back to Pulmonology.

It is always an interesting stat to Pulmonology appointments because they have you fill out a questionnaire about how your child's lungs are doing. Normally these are hard for me because Jillian normally needs her neb for about a week out of every month and the way the questionnaire is set up it makes it hard to accurately document that. Well this time was not hard. Her lungs have rather sucked lately. She has done four different rounds of steroids since we were last in Pulmonology. I have stopped keeping track of neb meds we have been though this fall/winter because it would be depressing (as I type this she is taking yet another neb)
They took Jillian back for vitals. She was such a big girl and I was so proud of her. She is really improving with how well she does with vitals. In the past she has always gotten upset with pulse ox and blood pressure but she is growing up so much. The lady taking her vitals was so impressed she gave Jillian a crown! Jilli was so excited! (ps, her pulse ox was not all that great yesterday...)
We then went to the room. A nurse came in and went over stuff with us. The nurse was really nice. I think every time we have seen pulomonology we have seen a different nurse. Thats a little weird for us because we are so use to having "our" nurse in GI, but all the nurses we have seen in pulmonology have been kind too!
Then the doctor came in. She commented about how long our winter has been with Jillian's lungs. We talked a little bit. We had to switch Jillian in January from Advair to Simbacourt because of insurance. I don't think the new med is working as well as the old one. There is one other med that is on the insurance preferred list that we have to try before we can appeal to get her old med back. This just seams CRAZY to me. So we are switching to the other med to give it a trial for a month and then go from there and figure out if this is a good med for her or if she needs to change meds again. We have already met a challenge with the new med because Walgreens does not have any and they are not sure when they can get any! We will see how that turns out.
The doctor then listened to her lungs. She kept going back and listening to one spot. Oh those moments when you wish you could be in someone's head. She then went back and looked at her most recent chest x-rays. She did not have a x-ray when the pneumonia was the worst.
The doctor then said that she wants to get a CT of Jillian's lungs. She wants it in the summer after virus season has passed. When we scheduled the test they told us that she would have to be sedated for the test.
We then went over to the mall. Jaime and Jason met us for dinner. We have been trying to meet for dinner with them in Milwaukee for many months so it was good for it to finally happen. Uncle Jason taught her how to play "drums" with chop sticks.

Sometimes after these visits I feel bad. I know that sounds strange, but I feel like I am a realist with Jillian's stuff. I don't like to think im pessimistic (maybe I am) but I tell it like it is. Her lungs are not doing great for her. As she gets older her lungs are needing more and more help. She is needing meds for her lungs more and more. I don't sugar coat Jilli health stuff, because that will just hurt her. If I go in and say that she is doing great but yet she is needing neb treatments most days in a week I am not doing her an favor. I try to put a positive spin on it and talk about the great things that she is doing because she is one amazing little girl, but there are many things going on that still need to be worked on and that we need plans for. I feel bad though because I feel like I come off as being so negative. People don't really want to hear reality when it is not happy (I have learned this to be true frequently when people ask what is going on with Jillian many don't want to hear about the struggles or will say something really odd to make themselves feel better about her situation) We do have a lot of joy in our life. We are blessed to be Jillian's parents. I would not trade her in for the world! I love her a lot and she does amazing things. I want to portray an accurate depiction of Jillian. Thats my goal... explain the real because explaining something else is not a service to anyone.

Our Tubie Princess in Pulmonology at Children's Hospital of Wisconsin

Uncle Jason teaching her how to play chopstick drums at PF Changs. Service last night at dinner was SLOW (and they were snippy about Jilli when we were seated) so she was needing some entertainment while we waited for the check

Jillian's look today. We got her these 12mo pants this weekend. They keep falling off of her but. If it was not for her onsie today she would have plumbers crack! But they are super cute! (ps, they looked like they would fit and they are the same brand as hear jeans from last week... maybe we will get her a belt!)

Dino nebulizer girl watching Mickey on the iPad. I am so thankful for the iPad!

Oh Friday

My first teaching job was a month after I got married. I was 19years old. It was the summer between my sophomore and junior years in college.
I worked at a daycare and was the head teacher in their school age program. That summer taught me a lot. We took a field trip EVERY day of the summer and thus spent a lot of time in a full sized van. With lots of van time came road trip songs. We listened to a lot of Putumayo CDs. My class fell in love with the song "Three Little Birds." They were cute singing "Every little thing is gonna be alright."

Last night as I was driving back from Children's that song kept playing in my head and it put a smile on my face. Through the crazy of yesterday I just kept smiling. I think part of it was that I had the option to smile or cry and I just did not feel like crying! I choose to find joy in Him even in the crazy.

As Jilli and I left work it started to snow. Parents were coming in to 4K to pick up their kids and talking about how the roads were a little slippery already. Not what I wanted to hear as I was getting on the road to make an hour drive and I had an hour and 15min to get there.  We got in the car, turned up the music and drove. Traffic was good and we made it up there in good time.

I looked at valet parking the car because it was so cold (-25 windchill), however I had a bunch of Tubie Friends to take in with me and I knew it was going to take me a little while to unload that car. As I pulled into the parking garage I hit the curb with my tire as I made the 90 degree turn into the parking structure. As I drove up the parking structure I could hear the air coming out of my tire. I got a parking spot on the floor with the skywalk. I got out of the car and yup, my tire was completely flat! There was nothing that I could do about it right then. We had 10min to get to our appointment on the 7th floor. Also, I know I am not strong enough to change my tire. I called Brent as I was walking into Children's and told him what happened and that I would need help. In December Brent took a job in Milwaukee by Miller Park so he is close to Children's. He told me to let him know when our appointment was finishing and he would come over and help me.

We went into our appointment. The normal people that sit at the front desk were not there and they were training someone new. They were training the new girl on how to do vitals. We do some things differently with Jilli so I was trying not to throw her off. Like even though she is over 2 now we still do her weight without clothes to get an accurate measurement. Jilli gains weight so slowly that her having clothes on does matter in trying to figure out if our current plan is working. The exciting thing is that Jilli is over 10kg now! We have only been working at that since she was 10mo old. She is right around 23lb. She is also at 32in for height!

"The first year of life is a time of astonishing change during which babies, on average, grow 10 inches (25 centimeters) in length and triple their birth weights." -Kids health

Jillian was born at 8lb 11oz and 22in long. We are getting there! Slowly but surely we are getting there.

Jillian was such a good girl for her blood pressure. She normally hates getting her blood pressure taken however she has been really into using her Doc check up center lately and taking her babies blood pressure. She gave them an arm and sat there nicely. You could tell she did not love it but she did not complain. They gave her some stickers for doing vitals so nicely. She was really excited!
We then went to the room. We brought with us 15 Tubie Friends from a donation. I had called GI last week and told them the animals were coming and they were so excited! They already had kiddos picked out for them to go to. It is so awesome to be a part of an organization that brings smile to so many people. I love making Tubie Friends!
Lisa came in and talked with us. I don't think I have said enough times how AMAZING the GI staff is. My kid is genuinely loved while we are there. They remember the really sick little baby I brought in the first time and the celebrate with us all of her accomplishments. It is like a little family there and it makes it a lot easier when we have to make decisions and discuss things that are hard because I know how much they LOVE my kid.
Sara our awesome dietitian came in. She has been helping us with an insurance issue with getting all of the formula we need for a month. (we need 12.2 cans a for 30 days. They will only give us 12 cans a month no matter how may days are in the month because apparently the state rounds down...) Sara has been really helpful in trying to make this work for us and I really appreciate that a lot! She said that Jillian made gains and for now we are going to leave her at the same rate. Getting Jillian to gain an appropriate amount is tricky so if we are seeing gains and not loss we are going to keep with that. I love how hard our dietitians have worked to try to figure out the Jillian balance and not just expect her to react like everyone else. They always ask me too if Jillian has made it to the next size of clothing yet... not yet! Maybe someday she will wear 18mo clothes, right now I am just happy when I find 12mo clothes that work!
Then our dr. came in. We talked a little bit and then talked about Jillian's most recent aspiration pneumonia. This is the first time we believe she aspirated from the top down instead of from the bottom up. The dr said that we needed to go back to see a dr. in the motility clinic to talk about options again. The topic of a fundo came back up again. I always feel like I am kicked in the heart when that discussion starts again. We don't feel like the fundo is the best option for her but I understand that we have to have the discussion because she keeps ending up with pneumonia (even though a fundo will do nothing for top down aspirations).  We talked about how we are in the mix of doing genetic testing and how if she has a muscle disorder a fundo is not recommended. It was decided that we would go to the motility doctor now but that we would not do anything until the genetics stuff has come back. This has made the genetic testing even more important. There have been times I have not pushed to find out the "what is this" because we did not know if having a name of it would change anything however it is now showing that it will. It will be a large determining factor in a VERY large surgery.   So please join us in praying the the genetic testing comes back with answers. We know there is something going on we just need to know what. Genetics told us we have a 30% chance of finding something in this round of testing. We also have not heard back from insurance yet about if they will pay for the test. The test is now looking even more important so if insurance comes back and says they will not pay I think we will need to figure out a way to pay for it because it is becoming more important.
We also talked about Jillian's motility meds. Jillian cycles cypro and erythro. They both have their pros and cons. Cypro is starting to be more of an issue. When you use a medication for its side effects you also get other side effects with it. In the past it has mainly effected her sleep however this cycle it has really effected her behavior. I know she is 2 and 2 years olds can be well... two year olds but it should not be a night and day difference in behavior between the two meds. Her daycare teachers can tell the difference and so can therapy. She is much more impulsive and has a lot more melt downs. She goes from the little girl who barely gets into trouble at school to the girl who continually gets into trouble. We decided that since it is a GI motility med we are going to let the GI motility doctor figure it out (they are the ones who prescribed it)
When they first said motility doctor my heart sank because the doctor we have seen in that past frustrates me a lot. We have had some really frustrating interactions. I am sure some people love him as a doctor but he and I don't mesh well and that effects care for Jillian.
When we worked with him in the past he had a fellow that we liked a lot. I thought she really listened and understood what we were saying. I respect her a lot. Well they told us that she is now practicing in the motility clinic as a doctor! We are able to see her! This made the situation a lot better because I feel like I have more of a voice with her and I feel like she wants the best for Jillian and is willing to work as a team to do accomplish that. So we see her in April.
We will follow up with our normal GI doctor in May.
Then we had to deal with the tire. Brent came to Children's and put the tire on for me! We also had the blessing that the car that had been next to me left so the spot next to me was open so Brent could park there and it gave us a little extra room to change the tire. I am SO grateful for Brent's help! He put the spare on, it looked good, I drove a few feet and the spare went flat! Thankfully Brent had  stopped on the way and bought a tire pump on the way so we were able to blow up the spare.
I then drove to Kenosha. Poor Jilli was having belly pain in the back seat and spent the car ride home crying off and on. We made it to my parent's house. Once my mom got done with work she met me at Sam's Club. I can not say enough about how awesome Sam's Club's tire department is! They took care of my tire while we shopped. It took about a half hour. The tire had a large gash in it so they replaced the tire. I would totally recommend Sam's Club tire! They made a the situation a lot better.

My parent's had plans to bring dinner over to my aunt's house so Brent, Jilli and I went to dinner the 3 of us. It was a nice relaxing way to end a crazy day! 

Tubie Friends to go to Children's Hospital of Wisconsin.

Brent changing my tire

Brent fixing a crayon at dinner with medical tape. I accidentally broke the crayon and Jilli was sad. Oh the life fixes you can make when you carry a large bag of medical supplies with you everywhere!

Ever smell Elecare?

You know the smell that rotten vegetables have? That is similar to the smell of Jillian's formula. Her formula is made of essential amino acids. It has different ingredients in it then regular formula. She is on this formula because there is some suspect of allergies and an amino acid based formula is very hard to be allergic to.
To us the smell of Elecare Jr. has become normal. Its not something that I want to spend time smelling or make  a candle out of but just like people who work with smelly things, you get use to it.
Normally we also only smell it for short periods of time. We fill her bag quickly and then seal that bag making it so we don't smell it for long...

Unless....

Many ounces of it are pumped onto the floor!
I woke up at 2am to her pump beeping like normal to be refilled. I walked over to her bed and stepped into something wet. You guessed it... Elecare. Somehow her extension set for her G and J had come disconnected sometime between 10pm and 2am. There was formula all over her bed and the floor.
We cleaned her up, moved her into her old DayDreamer bed and got her hooked back up. She was mad because she wanted to be in her ComfyLift bed but she went back to sleep without too much of a fight thankfully.
Got up this morning and went to get her out of bed and the plastic part of her g tube extension was disconnected from the j part! But this time there was no mess... there should have been though. See the extension set pushes in and locks. When the extension goes in it opens up the valve that lets fluid flow both direction. The part that opens the valve was still connected, it was just the clear plastic tubing that connects the plastic part to the drainage bag that was disconnected.
I was then grateful that there was not a mess for the second time however I was also concerned. Something was not working correctly. I got a new extension set and a syringe and tried to vent it. Nothing came out! I then pushed a little water in. I then tried to get out the water that I just put in and could not. She needed a neb by this point so I gave her a neb and worked on getting myself ready. After her neb I opened the extension set again and was finally able to get a burp of air out. After a while of leaving the extension set draining into a shirt I finally started to see a little bit of stomach stuff come out. It was strange. We have never had that happen before. Thankfully we see GI on Friday and can talk to them about it. She has also been complaining some that her tube hurts so I think it is the perfect time for a GI visit.

Both of these are AMT G-Jet extension sets, can you spot which one is broken?

In non Jilli news, our gecko Taco died yesterday. He fell about a month ago and broke his jaw. He has kinda been touch and go for the last month. He would look bad and not eat and then bounce back. He did this a few times in the past month. Yesterday I got home from work and he had died.
Brent and I got Taco shortly after we got married. We had him for 5 1/2 years. It will be strange for us to only have one gecko. Rest in peace Taco, we will miss you!

Our geckos, Taco and Chocolate Chip when we had then for about 6 months

We found a pair of blue jeans this weekend that are long enough and are not too bad around the waist... 12mo Toys R Us brand apparently makes longer jeans. Without the belt they would fall off but who can resist that fun pink flower belt! (don't worry she did have socks and shoes before she left the house)

One Wednesday a month there is not school for 4K students and teachers have staff meetings. Today was one of those days. Jillian was in her class while I was at meetings but then I was finishing some stuff up in my room and I did not want to have her nap at school because I did not have 2pm milk with us so we needed to leave before nap time is over to get her milk so Jilli hung out with in mommy's room for a little bit. She always thinks she is SO big!

She took my wireless keyboard and "used" it with the iPad. I think she was trying to make her own laptop

I have a Frozen hopscotch rug that I bought for her but have had at school since I bought it and she found it today. She thought it was a blanket so she pretended to take a nap under it. She is so silly!

Med port

Jilli has not been feeling 100% since Friday. Her lungs are needing more nebs again and she is coughing. Today she left church around noon and fell asleep in the car. A little after 3 she was still napping on grandma and bumpa's couch. We were getting ready to leave. Mom looked at her leg and it looked like poop on her pants( Jillian's poop is yellow most days) She took her pants and diaper off and no poop. By this point I could smell it... It was bile. Jillian's med port popped open at some point during her nap and stomach bile and formula had been flowing onto her and the couch. We changed her and cleaned her up. And now to try to get bile and Elecare out of the couch! 

Feeding tubes are getting a new connector that is slowing going to transition in over the next year. It's main goal  is to make it less compatible with other medical tubing (iv, trach, catheter ect). One of the other main advantages for us is that the med port caps will now screw on hopefully causing less accidental openings. We are fortunate that at this point med ports popping open is rather rare for us however I remember how they were rather common when she first got her GJ tube. 

 

Feeding tube awareness week 2015 day 7

Happy valentines day all!

Today's post is about giving thanks. I know it's not thanksgiving but we are thankful for all of the love we have received this week. 

I hope this week has given you an opportunity to see into our wounderful crazy life. Some weeks are hard. This week was especially hard with the emotions of genetics and the unkind comments we heard from someone. 

But in the midst  of the hard there is love. 

This journey would not be the same without the people who have come along side us and loved us. I consider myself so blessed. 

This week we had someone bring us food because they know we don't eat the best on weeks where we have big appointments. I have gotten kind Facebook messages and comments. I am blown away by the kindness. Thank you!

I can't even explain how much a kind Facebook note means to us. 

Thank you to everyone who joined in spreading the awareness. Thank you for letting me take over your Facebook feed this week. Thank you to people who wrote a Facebook post about feeding tubes or shared my video. That means so much to us. 

Here are our pictures of our clothes this week. I have worn more tshirts this week then I have in years. 

Feeding Tube Awareness Week 2015 Day 6

Friday, February 13th: Feeding Tube Fun!

We have so much fun with Jilli and her tube is a part of her so we have a lot of fun with her tube too! We have two choices for life with a tube, live depressed about the challenges or celebrate the journey. I really don't want to live my life depressed so we CHOOSE to celebrate.

Here are some fun pictures of fun we have had with her tube!

We make her tube fun! She wears pads each day to soak up drainage from the tube site, but we dont just use plain gaze, we use fun pads! She also wears belts to keep her tube in place. Those are fun too

We participate in the Children's Hospital of Wisconsin run/walk in September each year as our thank you to everything they do for Jillian!

Parties in hospital rooms. We have thrown multiple birthday parties at Children's. The funniest was Seth's 21st. We filled the bedside table with sushi and had a feast (I ate chicken, lol)

Tubie gear! This is Jillian getting ready to go see a family member who also has a tube

I will admit, Brent and I get a little goofy in the hospital, its how we stay sane!

Crib parties. We try to make her hospital stays as much like home as possible 

We decorate her feeding bag for special occasions. This one was for a surgery the day before Christmas eve

We put her pump in fun backpacks

Walks around the hospital

Our Tubie Princess!

 One of my FAVORITE fun tubie things that we are a part of is Tubie Friends! Tubie Friends is a non for profit organization that puts feeding tubes (and other medical equipment) into stuffed animals for children with those medical devices. We ship all over the world!
I volunteer for Tubie Friends as a surgeon. I put tubes into stuffed animals. I LOVE doing this and have been working with Tubie Friends for a year now and sent out over 50 animals last year. I am just one of multiple surgeons from all over the country.
I love working with Tubie Friends because it is a way for me to give back to the tube feeding community. The community that we have of other parents online that also have children with feeding tubes is amazing. We are so fortunate to live in the digital age where we have things like facebook to connect with other parents around the world who have kids with feeding tubes. It helps us to feel a lot less alone and they help to answer everyday life questions about having a tubie.
Tubie friends is a non for profit organization. That means we raise money to be able to make the animals.  Many of the surgeons work full time jobs elsewhere, and have tubies themselves. 
We use exclusively brand new Build-A-Bear animals, and we pay the same price as anyone else for the animals. We are always so grateful for donations because it helps us to be able to help more kids. I know how much Tubie Monkey has meant to Jillian. Monkey has gone to hospital visits, into surgeries, and to school with Jilli to teach her friends about tubes! It has been a great teaching tool.
One way you can help Tubie families is to donate to Tubie Friends to provide them with a friend just like their child.

Tubie Monkey ready to go into surgery with Jilli

Monkey has a backpack like Jillian

Me getting ready to put some tubes in bears. The silicone things on the table are the tubes.

She gives Monkey check ups

Jillian with her Tubie Friend

Tubie Monkey from Tubie Friends going to school with us!

Feeding Tube Awareness Week 2015 Day 5

Thursday, February 12th: Celebrate Success!
Talk about the benefits you, your child, or loved one has received from tube feeding. What is he or she able to do? Celebrate their successes!

What is Jillian able to do? LIVE! She is able to get the nutrients she needs to sustain life. She is able to walk and talk because of her tube. She can play with other kids and have fun because of her tube.

I think today is best explained in pictures... Here is Jillian showing you the things she can do because of her tube!

Read a book

Go shopping

Pretend to be Minnie Mouse

Visit family

Smell the roses

Make faces with Aunt Jaime

Sit for the first time

Watch TV with the boys

Sleep during meals

look this fashionable (not many people can pull off something sticking out of their nose that well!)

Swinging

Laughing at Uncle Jason

Going to concerts in the park

Lighting the world up with her smile

Being on her hands and knees for the first time

being allowed to just play with a spoon and that is it

going for a run with mommy

riding a space ship

crawling for the first time

seeing the princesses

playing the iPad

painting

not having to take all of this by mouth

getting her own special turkey dinner

walking behind a toy for the first time

playing princesses

looking at fish

dancing with daddy

playing with babies

getting to see her parents dress like this

Charming the nurses at Children's

playing doctor

Playing with her Tubie Friend

opening Easter gift

going to Church

Playing at Science and Industry

Swimming at a hotel

shopping with family

Watching Uncle Seth graduate

putting money in her piggy bank

Getting to hang out with these cool people

splashing in her pool

going to the fair

playing guitar

playing at the park

going to an observatory

going to the zoo

dancing

being silly

Taking daddy's slippers

playing with friends

popping bubbles

Joining in the Children's Hospital walk

Being a little mommy

Thinking medicine is the best thing ever

Helping make Tubie Friends

Having her own Halloween candy

Keeping hydrated while sick

being a fashionesta

Having her second birthday

Playing musical instruments

Cheering for the Packers

Being the goofy girl she is!

Without a tube Jillian's life would be very different and for that we are VERY grateful for all the things she is able to do because of her tube!