4 tests and ear tubes

I am going to start this out with a disclaimer. I am exhausted. I'm tired. I'm a tad bit emotional. If any of this comes out as unorganized, or unreadable, please take it as that my collage educated brain is sitting someplace in my head right now but I am not sure where.

Yesterday was surgery day. (Ie, I have not slept in several days because I am figuring out in my head all the things I need to bring/do before that happens, and a little stress too)

I got a voice mail while I was at work yesterday that made me just a tad bit anxious.  It was something along the lines of "this is day surgery, we are calling to see if you are on your way. Call us at...." It was 10:15am. We were told to be at the hospital at 12. It is over an hour drive with construction right now. I called them back. They explained that they had a cancellation and were going to take us early if we were already on our way but that by the time I called them back it did not matter anyhow.
Jillian and I left work at 10:45 and headed up to Children's. If you are headed to Children's anytime soon, be aware that the parking garage is under construction and there is no parking on the first two levels, making a packed parking garage even harder to park in. We did find a spot but they were hard to find yesterday.
We headed in and got to the security desk. The security guy that we have seen during our many trips to children's was sitting at the desk. I said we were going to surgery. He said "you know how to get there right." Yea, I do.
Her surgery was going to be on the 3rd floor (there is also a surgery area on 4th floor). We had never checked in on the 3rd floor for a surgery because we always ended up on that floor after weird circumstances and always bypassed their check in area. Yesterday we got to experience 3rd floor check in :)
They called us back and did her height and weight. She stood on the big scale so she thought she was pretty cool. The nurse thought I was kinda strange for taking her clothes off to weigh her however with all of her stuff we want really accurate weight. She was up a tiny amount however I left a diaper on and her belt, which we do not do in the GI clinic, making her weight the same.
We then went back to the Pre-op room where people asked questions and and over the next 2 hours we talked to people about the surgery. We spent our time giving tube monkey a check up and playing on the iPad. My mom joined Jillian and I around 1:30. Around 1:50 they gave Jillian her happy juice. She is rather adorable, and kinda funny in the in between state. She would smile, and then her passy would fall out and then she would look confused. Around 2:20 they took her back (only 25min behind schedule, not bad!)
Watching them carry her through those doors I can't go in and having to walk the other direction is the hardest thing I have had to do over and over as a mom. She started to cry just as they went through the doors and it took everything in me to keep myself from balling right there in the hallway.
I went to check in at the waiting room and my mom went down to grab herself some food. (I don't really eat on hospital/test/surgery days. I can't) The lady at the desk asked if I knew how this room worked. I said yes. She said "good... well not good that you know, but good that I dont have to explain it"
I then found a seat and started working on some thank-you cards. Mom got back and joined me. After about 20minutes her pulomologist came and found us. We went back into a little room to talk.
First she told us she was hard to get an IV in. We know that well from other attempts (I did not realized until later how hard she was this time. She has 2 poke holes in each of her feet, and both of her hands. They finally got it in a strange place in her wrist. Ie. I have counted 8 poke holes so far) She said that there was an area by her vocal cords that was not as strong as it should be but that the ENT would talk to us about that. She said the lungs looked good. There was a little swelling in one part but that could be from her being sick for the past few weeks. She said structurally they still looked good and that they took samples and would send them off to the lab. She said that when she left the OR the ENT was looking at her ears.
Mom and I then went back to the waiting room. After another half hour of no one coming out we knew they must be doing the ear tubes. Jillian has not had an ear infection in over a year however when she was at audiology last week the little thing read that she had a lot of pressure in her ears and she had low tone hearing loss (which she has had as long as I can remember and we have seen audiology about it in the past and they blew us off) The audiologist called the ENT and asked her to look at putting in ear tubes during the surgery. 
After a little while later the ENT came to talk to us. She said that she did put tubes in Jillian's ears, however the one ear did not have any fluid behind the ear drum and the other ear had a very tiny amount. She wondered if Jillian has really thick ear drums leading to a poor test. She said she was already in the ear so she put the tubes in to see if they would help the hearing loss at all since the ear tubes would not really harm her.
She then showed us a video of Jillian's throat. There is a little area in front of her voice box that is dipped in instead of flat. They were worried that there was not muscle there however there was. They said there is not much to be done about it now but if she continues to aspirate down the line we might do injections into it. She said there were not any holes or clefts in her airway that would be causing the aspiration.
I was then called back to go to the post-op room. A different lady was walking me back and she asked if I had been in the post-op room before. I told her yes. She said "good..... well good that you know what it is like so it is not new for you, but not good that you have been back here enough times to know what is going on."
I got back there and she was asleep. The nurse and I talked about how she was doing. Her lungs did not sound great however for the one procedure they have to put fluid in her lungs and they only get 1/2 of it back out. The nurse worked on charting and cleaning stuff up. He said they had to help her start breathing after surgery and once I looked over and noticed all the stuff there that they used to help her, I just wanted to cry. He said though that once she started breathing well on her own, she started to used the tube in her throat as a passy. That would be my girl. After a little while of us being back there she woke up... screaming.
They moved us up the the forth floor post-op after some discussion. She screamed in pain for almost 2 hours after surgery. It SUCKED! Eventually she got more pain meds and calmed down. Brent came up and joined us at the hospital after work and my mom headed to an appointment. They wanted to make sure she accepted her j tube feeds before we went home.
By the time her pain was finally managed, her respiratory rate was stable, and she had some pedialyte in her j tube, it was after 8pm. I was exhausted. They had told us to plan on spending the night but since she met the requirements to go home they let her go.
It was one of the longest drives home EVER! It was so hard to stay awake. Dan had offered that we could crash at his place however we did not have formula or a bed with a proper incline for her to sleep in. We also did not have her neb or her meds with us so we had to go home. I ended up calling my mom and we talked while I drove just so I stayed awake. Honestly, it would have been easier if we spent the night.
We got home and had to get settled in, get her meds and to bed. By the time we got to bed it was late. We continued to give her pain meds during the night to help her be comfortable. They messed with her throat, lungs and ears all at one time and she is feeling it.
This morning it is 9:50 and she is still sleeping. Hopefully she will be able to rest most of the day today and her pain will be better managed. I'll update more later about how today goes.

update: She woke up at 10am when her pump went off. She is kinda crabby and wants to sit in her Sofia Chair with a blanket and tube monkey and doll by herself. She woke up with white vomit on her shoulder/arm. We are assuming it is her reflux med that she vomited. I am not sure if she vomited anything else because her bed is soaked with pee, sweat and probably vomit. We will watch it today to see if she vomits any more.

She gave her Tube Monkey a check up. He got a name band and got to go in the OR with her. She loves her Tube Monkey and  I feel honored to get to make them for other kids like her.

Looking at grandma's iPhone

Playing on the iPad. She loves the Dinseyland app a lot!

Audiology.

Yesterday jilli and I went and visited audiology. 

Let's put it this way. I have told the story multiple times today and not once has it not come out snippy. So here is the story in short attempting to obmit the snippy

Jillian has a lot of fluid behind her ear drum however her ear is not infected. She still has low tone hearing loss (surprise, surprise) 

Her sugestion was to see and ent. I told her we did that Monday and they said her ear drum looked fine. I told her ent is doing surgery on Tuesday. She said she would see if they want to put in ear tubes on Tuesday anyhow to see if it helps her hearing. She said if they don't put tubes in then to come see her again in a month to see if she suddenly starts hearing low tones. 

Day sugery called this afternoon. Her test will start at 1:55 on Tuesday in the OR. We have to be there at 12:15. So far just ENT will be in the surgery however pulmonology and genetics have been contacted to see if they want to do anything while she is in the OR. 

Yesterday afternoon there was some excitement by our house. Hwy 12 runs behind our house. Brent and I were standing in the kitchen and all of the sudden we looked back and what looked like a tour bus was in flames on 12. The vehicular was totally engulfed in flames. It was crazy. The vehicle burned for a long time and was almost totally destroyed. 

So that's what's up right now. Trying not to be stressed about the next few days. We went to the store and got stuff for our hospital bag. We have gotten rather lax about having a bag packed and ready to go and we know there is a possibility a couple of times in the next week that we might be spending the night at the hospital. Yeah for clearance sweatpants and T-shirts. 

Some recent pics

Airo digestive clinic

Today we got to go somewhere new at children's. We visited the airo digestive clinic. It takes a multi disciplinary approach to complex kiddos like jilli. 

Speech: this is still a GI problem. She said to keep working with our speech path that she sees now. She said to call if we have any questions. She was really nice and this was all I was expecting from her

Pulmonology: the yuckyness has moved from her left lung to the right and the middle. She said it has hit the point that all she can do is cough it out. I am grateful that someone in pulmonology finely heard the rattle. She is going to check with Jillian's normal pulmonologist to see if she wants to do any tests. I liked her a lot. 

ENT: we had an ent and ent fellow that worked together. I liked them a lot. They did a couple of things:

1. Referral to immunology to figure out why Jillian can't handle immunizations/gets sick all the time. I have to call tomorrow to make that appointment.

2. They want to do a test to look more in depth of why she aspirates. This test has to be done in the OR. The test is scheduled for sometime next Tuesday. They will call me with the time. They are going to see if pulmonology wants to add any tests since she is in the OR anyhow. 

GI: we got to see my "favorite" GI doctor. He was not even going to come in the room however we asked another doctor a GI question and they went and got him. He said if no one else in this clinic wants to see us again that he will see us back in feeding clinic. I am just pretending this part of the visit did not exist because everyone else was wonderful and he makes me mad. 

So the plan is to see what comes out of the test next week and go from there. Stay tuned the rest of this week as we see audiology tomorrow and Friday Jillian is sedated for an MRI and tube change out. It has been a crazy week in our house with her sick, and this next week looks to be crazy with figuring out how we can best help her. Nothing like giving your kid anesthesia twice in one week to send a mom's head into overdrive. 

    

Weight Check

Today my mom, Jilli and I headed to Children's for a weight check.

This morning Jillian started peeing again. Her pee is still down, but it is improving. She also pooped green liquid again this morning. Her temp has been varying between normal and upper/mid 99's today. She has needed a couple of nebs today because of odd breath patters, coughing and exhaustion.

Well we got to Children's and suddenly our sick child decided she needed to be a clown. She LOVES the GI clinic at Children's. It is rather crazy how goofy she gets there because she loves them so much.
We weighted Jillian.
She was around 9.6kg (under the 5th percentile for her age) and her height is the same (she is around the 5th percentile for age there too...) Her weight for her height is in the 50th percentile which is why she does not look as small as she is, however in shorts she still wears a 6 or 9 mo. She is wearing the same clothes this fall that she did last fall, and in reality they are bigger on her this year then they were last year! I told the dietitian that Jillian has lots of cute 18mo clothes that still have tags on them that she needs to grow into :)
After some talking we decided that the best plan was to try to slowly bump her up to 62ml/hr (she is currently at 58ml/hr). We have tried to bump her up before however that was on her old pump. The new pump that she has seams to run slower then her last pump (the pumps has an allowable 7% margin of error). We believe her last pump ran fast and her new pump runs slow. Her new pump is about half an ml under for every 10ml. We are thinking that bumping her up to 62ml should hopefully not be too hard since we should just be bringing her up to what her old pump was running at. Hopefully.
While we were there the dietitian asked about our ER visit the day before. We said it was kinda pointless (did I mention that the ER doctor wanted to feed her orally?!?!?!). She said that she would see if any of the GI nurses we around to take a listen to Jillian's lungs to see how they were doing today.
Our favorite GI nurse came in (the one who sent us to the ER yesterday) and listened to her lungs. She said they sounded ok. This is when Jillian turned into a ham! She LOVES our GI nurse A LOT. She got silly then and seamed like her normal self. I am glad she likes to be at Children's. It would really suck if she hated it there. I love that she is so loved in GI, however when she turns on the charm like this when she is sick it frustrates the crap out of me. Partially because they then don't see what life is like at home as she is puking and not breathing and it sucks. I worry that they wont believe me when I tell them about her being sick. But the biggest part is because I know when she turns on the charm for a little bit, she will pay later. She only has a finite amount of energy and when she expels a lot of it at one time I know the crash will be hard.
So as we got in the car the cough started again. As we drove she looked exhausted. As we got home her breathing became more work. Within a while of being home she needed another neb. After dinner her temp was back up to 99.5.
I wish someone could explain to me why her body just shuts down like this. Her GI system stops working correctly from top to bottom. It then causes her lungs to be compromised and frequently ends up in aspiration which then sometimes ends in pneumonia. We watch this cycle over and over and all we can do is watch and help her deal with the symptoms as much as we can. We fight all that we can for her. We sit in ER rooms for hours and have pointless conversations some days with  the hopes that one of these times there will be an ah-ha moment. We just keep fighting for her whether people think we are crazy or not. Sometimes I just wish her doctors had to sit at night with her as she coughs. I wish they got what it was like to be in our shoes, but then I don't, because I would not want to do that to anyone. Not that I dislike my life. I LOVE my life. I LOVE my daughter. I am SO grateful God gave her to me. I have the BEST little girl in the world (I know I am a little basis) But it is hard to watch your kid struggle to breath. God gave us this little girl for a reason. God has a plan for her. So our job is to help her on this journey. We will keep fighting for her. Hopefully this round of GI shut down ends soon. Another will come and we will help her with that one too, because we love her more then we can even fathom.

Cuddling last night as we watched Frozen in Bed

Cuddling with her blanket in the car

My little dino

Long day in the ER

So I posted yesterday about Jillian vomiting. Last night she slept like normal. She woke up this morning with an almost dry diaper and a deep cough. I sent an email to genetics to get their opinion. 

As I got to work I heard Jillian poop. I brought her in and changed her. It was green liquid. 

GI called back and said they wanted her to see her ped so they could see if she was dehydrated. I called her ped and the nurse said she needed to talk to the dr and would get back to us about seeing her. A while later GI called back and asked if we got her into her ped. I filled them in about what was going on there and they said to take her to the Children's ER because they wanted her to get IVs per the plan for when Jillian is ill. 

I was teaching so I sent Brent a text and he came and got Jillian and took her to children's. They checked, saw the dr and then they sent her for a chest x ray. 

Her weight was 10.1kg (not an accurate weight, she is not peeing and constipated) 

Her pulse ox was 96

Her chest x ray showed no pneumonia (we heard her aspirating while vomiting last night) but they said it is rather early for that to show up on an x ray. Her cough tells me some ended up in her lungs.  

Later in the afternoon they decided to run blood work. That came back fine. 

They decided to discharge her. We asked them what the plan was since they had done nothing for any of the symptoms that brought us here and since they had not given her extra fluids ie the reason we were there. 

The resident then went and talked to the attending. The attending came in and said that she was not dehydrated according to her blood test (she had just come off her tube feeding and when she is sick she dehydrates once she is off). She said we could give her pedialite in addition to formula. (Ie, she was not really getting Jillian's GI stuff). She said GI wanted to have her start a med for the blood in her stomach (they told me that on the phone in the morning)

I realized we were not getting anywhere so we agreed to sign discharge papers.

Since we got home she pooped green and it was the consistency of pudding. 

She is very uncoordinated tonight and falling a lot. She is still coughing, gagging and choking. 

Something is not right with my kid. Her GI system is not working right from top to bottom causing problems with other body systems. Thankfully we see her dietion tomorrow and we see the airo digestive clinc on Tuesday. We need a plan for when her body shuts down like this. This is not normal. This is not typical kid. I think that is part of he hard thing when we take her to the ER. She is so far out of the norm they are not sure what to do. 

So I guess we wait and see. They told us at discharge that if she did not have 3 wet diapers a day to bring her back to the ER or if her tummy is hard (you know, the reasons we brought her)

I'm trying not to be too frustrated and annoyed and remind myself everything happens for a reason. I'm hoping now that she has pooped that everything starts clearing up. Here is to hoping! 

A random long night

Jillian's body likes to keep us guessing. We are never quite sure what is coming at us next or when it will be. We live our lives with the expectation that anything can always change. 

Today I had a todo list. Jilli and I got home from work at 12:30. Jilli fell asleep in the car on the way home so I put her right to bed. I ate some lunch and puttered on some stuff. I fell asleep on the couch. I woke up to her pump going off. Her pump was being a pain today! 

She woke up to me filling her pump and we went down and cuddled on the couch. I turned her off at her done time. I flushed her with water and then we went up and got the mail. 

We came back in the house and jilli went in her little house and played with her phone while I opened the mail. While I was reading a letter from children's jilli started coughing and gagging. Sometimes she does this with her own body secreations. She stopped so I went back to reading. I put the letter on the fridge and came back into the living room to more gagging and choking and then I noticed she vomited clear. 

I went over and picked her up. She started gagging. I had her stick out her tongue to see if she had anything in her mouth and there was nothing. She then she started gagging a lot. I bent her over the wood floor and she puked more clear liquid all over the floor, rug and herself. I cleaned her up and the floor. She wanted to help by playing in it. She then played for a few minutes. Then it started again and she bent herself over and puked. She sat back up and went to play. 

She then started having her absent spells. You say her name and try to get her attention and she just keep stairing straight ahead. Even Daniel a Tiger had a hard time getting her attention. Eventually she would come out of it and respond. These episodes kept happening every few minutes. Inbetween then she would keep playing like normal. She was also swallowing a lot and drooling all over. I hooked up her g drainage bag to help her with all this saliva. 

I called the GI nurse line but they did not call me back before they closed for the day...

By 5:15 she was warn out and we curled up and watched movies. She and I cuddled the rest of the night. She kept having issues with extra saliva and was swallowing. As the night went on the absent spells became less frequent. 

In her drainage bag is flecks of blood. We have been seeing one or two flecks of blood in her bag for a few nights now however ist has only been a couple of flecks. Tonight there are more flecks. It is not like an active wet bleed but there is flecks of blood in each clump of fluid that comes out of her g line. 

She also has not pooped since either Thursday or Friday (I can't remember which) 

Something is not right in her GI track. This is not a virus or bug. She has no temp and has played like normal multiple times since getting sick. This is her GI system not working. We will see what they say when they call in the morning. Our goal right now is to have a normal night with no vomit. We have a plan if that changes. Right now I am thankful for g tube drainage bags to relieve some of her discomfort. 

Poor girl! 

  

The red/brown is blood. There are many clips like that. 

OT Eval

Today after work Jillian and I headed over to the place that she receives speech and PT. The nice thing is that the therapy place is super close to my work. 

We got there and it was really strange. Normally when we are there the place is packed with kids. Today there was only one therapist in so it was just us and the therapist in. 

The therapist used an assessment that I worked with when i was in school.  It is always interesting watching someone else administer an assessment. 

At the end we talked. She said that Jillian's issues is with muscle strength, not coordination. She scored in the 75th percentile for hand eye coordination (she is great at peg puzzles and putting small objects in things). 

Because she is so strong in hand eye coordination she does not qualify for services. So far her lack of muscle strength does not affect enough of her daily skills for her to need services in this area. 

It's kinda gray how I feel about this. I'm so glad her hand eye coordination is so good. It opens so many skills for her. Honestly my schedule is happy to not pack one more thing in. 

However, I see where the gap is starting where she is having a harder time with fine motor things because she does not have the arm strength. 

She said that they start testing and treating for arm strength delays at age 6. She said if her arm strength is still weak then we can revisit it. She also said that if the strength issue affects her daily living more that we will readdress it. 

So, what else has gone on this week? It is the first week of school! I now only work in the mornings! This has made it so we are able to see therapists and such in the afternoon. 

I'm LOVING teaching 4k! My kiddos are great. I'm really excited for this school year!

This weekend was fun. We spent it relaxing! It was a great time. Here are some pics: