B to 3 eval- PT

Yesterday Jillian really seamed like she had turned the corner. Her respiratory rate was in normal range and her pulse ox was 95. We were able to space out her nebs a little over 6 hours. She got into things which for a toddler means they are feeling better. She had a neb last night right before we put her to bed. When I got up at 2am she seamed to be doing well.
I got up a little before 9am (I dont know the last time I slept that late) to a little girl who was having a hard time catching her breath and had a respiratory rate over 60 again. I ran her to the living room and started a neb.
Over the day her respiratory rate has only gone as low as the mid 40s. It has been up in the 60s several times today. She is back to getting nebs every 4 hours. Her pulse ox is in the low 90s (if anyone knows a good ped pulse ox meter I would love to talk...). Her temp has gone between normal and 99.7. She is sitting on the edge of needing to be seen again. I HATE the gray zone. Child decide, do you need to be seen or not. 
The one difference with today over Sunday is that she is awake more. Sunday she slept most of the day. Today she is awake but not doing much. She has played a few times but play time has only lasted for a few minutes at a time. Most of the day she has sat and looked at books, laid on my chest or she sat in a chair and watched a half hour long movie without moving (that never happens). She is just chill. So not like our little girl.
I have been able to get a lot of lesson planning done today. I guess that is one good thing of being pinned to a couch by a little girl. I guess the laundry that I wanted to get done will just have to wait...

Watching a movie with her lamb

Today she had her birth to 3 PT eval. Jillian perked up when the therapist was here (she just had a neb an hour before and had a nap). She showed her how she pulled up on things. The PT said that Jillian sits on the edge of things. By 15mo 90% of kids are walking. Jillian is not. By 15mo MOST kids have several words. Jillian babbles but has no words. She said that if nothing has changed again in 2 months then they will step in and do a bunch of therapy however as of right now she is not far enough behind for them to do much. She qualifies for birth to 3 because of all of her medical needs however that does not mean they will come out much to do therapy. We are still just hoping she catches up. We will see. If not, in 2 months they will jump in full force. Until then we help her the best we can at home. I guess it is a good thing I have a degree in special ed. I never realized how much I would use it. I was laughing today as I did an Ages and Stages eval on Jillian. Most people would not know what Ages and Stages is but it is something you do a lot with a special ed degree so to me it was just normal. When you do a questioner like that though you can really start to see the gap that is forming in multiple areas. However, she still does GREAT in the logic area. She is such a smart little girl.

So for now I will cuddle with her and observe her to see what we need to do. If she needs help again then we will get that for her. 

Follow up visit, and feelings of my heart

 Today I took Jillian to the ped for a follow up. She said her lungs sounded better and even though she was still really congested (When I hear her breath right now all I can think of is the imperial march...) that is getting better too. Her pulse ox is at 95 and her respiratory rate is back in the range it should be.
The big thing that came out of this trip is that we are suspending giving Jillian shots for now. Jillian gets sick after EVERY shot she gets. It is not an immediate reaction. It always takes a couple of days. The symptoms are not the same every time but it is typically respiratory. We don't know if they just kick her immune system so bad she can't fight things off or if it is the shots themselves or if it is just a major coincidence that she gets sick after getting shots but we cant keep doing the same thing and expecting a different result. We are going to take shots out of the mix for now. Maybe we will try again when she is old. She currently is only missing 7 shots out of the many you give in the first two years. 2 of that 7 are optional. This was her doctor's idea and we support it. Her doctor said that scientifically this should not be happening but she is the one who administrators the shot and then she is the one who treats her when she is sick.
I know some people will not agree with that choice. I know some doctors will lecture me about it. We have to do something. I guess until they have lived our lives and see what we have seen over the last 15 months then they will not know what it is like to be us and make our choices. We try to make the best choices that we can for our little girl.
Her doctor said that once we get genetic testing back then we will talk about this again. Hopefully genetics calls back soon. I have called, GI made a referral and the doctors when we were in the hospital called. Everyone is on the same page right now that we need to do some genetic testing. I am starting to get anxious about them not calling me back in a week but her doctor is getting really annoyed and said that if they don't call back soon or can't get us in soon then we will need to look at going elsewhere. I don't want to go elsewhere. We LOVE Children's! We have met some amazing people there, and as strange as this sounds, it is familiar. I know how it works. I know where to go and who to talk to. We will do whatever is best for Jillian but I want to exhaust all of our options at Children's first before we look elsewhere so please genetics department, call us back, have an opening soon, and make it for a day I already have off... is that too much to ask?

I'm not a person to break down in the moment. I just do. I go through crazy days with Jillian without much emotion. I just go into go mode. I get things done, I hold intelligent conversations, I don't cry. (my allergies were bothering me Sunday so my nose and one eye kept watering and it was driving me crazy because it looked like I was crying even though I was not) Sometime after the fact it always hits me like a ton of bricks.I have always been this way. It is what I have had to do. Think about it. My grandfather had multiple heart attacks when I was little. My mom's lung collapsed twice when I was in 8th grade and had lung surgery. When I was in collage my dad's heart rate spiked to over 300bpm and they had to "restart" him. My little brother almost died while I was pregnant with Jillian. When I was in high school I was hospitalized for asthma attacks and then was sick for 4 months with a bad appendix and gallbladder. Hospitals are not a foreign thing to me. 
I was reading a blog today about a little girl with a mitochondrial disorder. I have been in research mode again lately. I just want to soak up all the info I can to best help Jilli. Her ped is fighting for more tests for her so we can figure out an underlying cause to all of this. I have honestly lost count of the hospitalizations this child has had and she is only 15mo old. (I just logged onto her mychart for Children's and it shows 9 hospital admissions... each with different lengths!)
I read a post about spending time in the hospital. I have read multiple posts from people who have spent a good amount of time in the hospital. Frequent flyers. They all tend to talk about how much their child is loved by the people at the hospital, but how they never imagined it being them spending time there. I totally understand that feeling. I love that many people at Children's love my little girl. They genuinely care about her.  However, I remember seeing commercials for Children's several years ago and thinking how thankful I was for all they did for me when I was in high school but it is different now.
When we arrived at Children's on Sunday the floor nurse was trying to explain stuff to me. Things I already knew about where to find things and how stuff works. I understand the drill. My mom and I left the room at dinner time to grab food from Cafe West and Brent stayed in the room with Jilli. As we were walking out of the room the nurse asked us if we knew where we were going. I said yea. (I have to admit, I was getting kind of snippy with her, it had been a long day and I already told her multiple times that I knew were stuff was because we had just been here... again) She said she was just so sorry that we were back. For some reason that comment annoyed me... a lot. It is not that I wish to be there, but it is what it is. We needed to be there. It was the best place for Jillian at that time. At that point in that very long day I was not sorry to be back... I was grateful. I was grateful Jillian was getting the help that she needed. I was grateful for all the doctors who had listened throughout the day. I was grateful for the fact that we had a children's hospital so close. I did not want anyone to feel sorry for me right then. I what exhausted, but felt safe.
Days are long in the hospital. Floor doctors should not greet you in the hallway to ask whats going on because they heard/saw we were back. Nurses should not be telling stories about times we have been there before. I should not be talking to my mom and telling her that I am excited for the nurse we have been assigned for the day because we have had her before and it went smoothly. I should not have nurses asking me how to do things (that is nothing against the nurses, there are just some things that we live with day to day that they don't so they are respectful and inquisitive enough to want to learn, but I should not have enough knowledge of anything medical as a 4 year old teacher for anyone to want to ask me medical questions). I should not carry meal tickets in my purse at all times just in case.  But those are all real things. That is out life. God has blessed us with great doctors and nurses. He has granted us with knowledge and the capability to learn these things. He has granted us people who have bought us meal tickets as gifts so we don't have to worry about that.
This could all be worse. We have Jillian with us.
I was reading a different blog from a mom who does spotlights of families with special needs. What most of those families say is that they are so grateful just to have their child, despite everything else. That God teaches them things though their child everyday and that to God their "stuff" is no surprise. God was not shocked about Jillian's needs. He gave her to us. She is His child and we are lucky enough to get to tend to her. She is our gift despite all of this. While I don't wish this on anyone else, I am not running screaming from it either. This is our journey. God knew our journey before we did. He knows the end of the story.
So while we love support and kind words mean so much to us. Please don't feel sorry for us. Pray for answers so we can best help Jillian. Support causes that we love that support Jillian and kids like her. Be a listening ear. Ask us how she is doing and really listen. It drives me crazy when people say "well she looks just fine to me." Understand that we are making big choices for our little girl and in some things there is no "good choice" just a mix of what what is the least bad. Don't judge us for our choices of what we do and don't choose to do. We try to give Jillian as "normal" of a life as possible, but sometimes that involves doing things differently.  Know that sometimes we are just holding together for the moment, and be accepting that we are over tired and trying our best.  But there is a big difference between empathy and feeling sorry for us. Feeling sorry for us solves nothing, joining with us does something.

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.

I've never gone down the interstate that fast

This was a crazy day! 

Saturday Jillian woke up with a cruppy cough. We all woke up coughing though. Her cough subsided within a little bit so we did not think too much of it. Throughout the day she had a slight cough and a little bit of a runny nose. Neither of those things are too uncommon for her. I have had yucky sinuses since Friday so I figured she might just be having allergy issues like me. After all this child lived most of last spring and summer inside due to allergies. 

We spent saturday night at my parents because Brent had sound for church Sunday morning. Around 12:30am she woke up coughing and coughed/gagged/choked for the next two hours. A little after 2am she fell back to sleep. Around 5:30 she started coughing again. Brent left for church a little after 6 and by 6:30 she was coughing a lot so I pulled her up into the bed with me so I could listen to her better. Around 7am my mom came in and I ended up finding a neb med in the diaper bag so we did a neb around 7:45 (we had forgotten her neb at home and she had not used it in several days). She was breathing so fast. I was getting a respiratory rate around 60. By 9am she still was breathing really fast and very lethargic. We decided then it was time for her to be seen. 

Mom and I took her to the walk in at aurora. We registered at the desk and had a nurse take us back right away to do vitals. Her pulse ox was 89 and her respiratory rate was 56. Her temp was 100.0. The nurse went to talk to the dr. The dr listened to her and said they needed to transfer her to the ER. A nurse came back in and walked us to the ER. They brought us right back to a room. 

Once in the room 3 nurses got to work doing her vitals. Her respiratory rate was up to 68. Shortly after a doctor came in and listened to her. We talked a little bit about her history. He ask if she were to be addmitted, where would we like to be? We told him the first choice was children's. He agreed and said that children's was a better place for her considering all of her other stuff and if he was us he would chose children's. We could tell when he left the room that he was planning on admitting her. 

A little while later a nurse came in and tried to start an iv with no luck. They decided to stop trying. Radiology came in and took a chest X-ray. A respitory therapist came in and gave her a neb treatment. After a little bit a nurse came in to check on her and her pulse ox was going lower and lower so they started her on oxygen. A while later the dr came in. He said that he and the radiologist were disagreeing about the X-ray. One said pneumonia and the other did not. The dr said he was going to admit her and they were starting the process to transport her to children's. This is were the day started to move slowly. It took 3 hours to get the transport set up and for the ambulance to get there. The ambulance arrived and they strapped Jillian's car seat onto the stretcher and then strapped her in her car seat. She had to go via ambulance because she needed oxygen. Even on oxygen she was pretty lethargic. 

I rode in the ambulance with Jillian and mom followed behind. We flew. For the first half of the trip she just looked around but the second half she slept. 

Once we got to children's we went right from the ambulance bay to a room on W10. We started with nurses in doing their check in stuff. Her weight was up however it seamed high to me and she had a gown, diaper, and monitors on her. 

The doctors came in and looked at her. They were having a hard time seeing her ear drums because there was so much wax. They dug it out but were still having a hard time seeing. 

A little while later the hospital ped came in. She said the X-ray looked ok to her. She said the plan for now would be to watch her to see how she does and to try to get her off of the oxygen. She said this could be a virus or a reaction to the shot she had Wednesday. She got a look at her ears and one is at the start of an infection so we put her on an antibiotic. 

She is getting nebs every 4hours. She is in isolation because it might be a virus. 

It's almost 3am now. Around 2am we tried to bump her oxygen down. The meter was having a hard time stating where we wanted and her pulse ox started dropping again. We got her down a little bit from what she was however she is defiantly not ready to be off the oxygen. We will see what the rest of the day brings!

 

2 doctors visits, 1 resturant, 1 post office and a presentation

Pediatrician:

• Jillian is still not walking independently or has a vocabulary of any words. She does pull up on furniture and "walks" the furniture, however she has been doing that since mid fall. Jillian babbles a lot however she does not have any sounds that she says to represent anything. Because of those two things she is being referred back to Birth to 3. I sent and email to get that ball rolling.
• Back in late November Jillian was in the ER and they had a hard time cathing her because the opening was fusing together. Well it is fusing together again so they opened it up again (she SCREAMED) so we need to put estrogen cream on it for a few weeks. That is so much fun! Jillian is now trying to put her diaper on herself, lol! 
• Her ped wants us to visit genetics again. She wants her tested for a mitochondrial disorder. We were suppose to follow up with genetics in the summer however her dr would like her seen sooner. 
• We figured out what shots we were going to do in what order. Because Jillian gets sick when she gets shots we have to decide what shots a most needed. We were going to do the MMR shot however as the dr and I talked she referenced that MMR is the controversial shot. Having worked as an autism therapist I have heard of the MMR vaccine. She brought up a more recent study that showed that kids that tend to have adverse reactions to that shot had an underlying undiagnosed condition before they got the shot. We decided that for now we will hold off on that shot until we know more of what is going on. Jillian got a different vaccine yesterday and will get another one in 6 weeks. 

GI:

• Have I mentioned before that I LOVE our GI nurse! She is amazing! 
• Jillian's tube is still twisting when it should not be. We are going to just keep taping it. That is an easy fix. If we need a more complex solution at some point we will look at that but for now tape works
• Her weight is up from when she was in the hospital. We are thinking the bump in calories is working. We are going to keep her on regular Elecare for now. 
• Jillian's test came back that she refluxed a lot. They want to repeat the test to validate the results. Now we wait to hear when that will be. She will be in the hospital for 2 days again. 
• They diagnosed her with dysphagia
• I brought up the fact that Jillian has not been sleeping great on her new med and that her drainage is up from going off the Erytho. The doctor said the sleeping is a side effect and that the fact that her drainage is up was a good observation on my part. We are not doing anything about it for now. We will see if we continue to think it is a good med for her. Right now I am not positive that the side effects are worth it to me to keep her on a med that I am not seeing much good in.

Post office:

• I have been visiting post offices more lately mailing Tubie Friends! I am loving doing this! 

Presentation:

•  I got to do a sensory presentation for a group of teachers in Kenosha. Jillian came with me and a super cute!
• Once we were done there we drove home and had dinner with Jaime and Jason. 

Burp hiccup hiccup

Yesterday we were able to celebrate my Grammy's 70th birthday. It was a fun time getting to see my family and some people I had not seen in a long time. It was fun to talk with my cousins and to see others smile at Jillian. Jillian was like a Ping pong ball during the party. She was here there and everywhere!

She LOVES her gears!

I'm going to bite this mask if it must be one my face!

Today she has been full of burps and hiccups. I lost count of how many times she has burped and had hiccups today. It has been a long time since she has been this burp/ hiccup filled. She had hiccups a lot when she was little. Oh the interesting things of jilli.

The tell tale pose of Jillian refluxing while she sleeps

We started Jillian on a new med Thursday night. We have ping pong girl! She is very hyper and has a mini attention span. One of my family members who was at the party (who works at a pharmacy) commented on how she figured Jillian must be on something with how everywhere she is. We will see how it continues to go. She goes and goes until she literally falls over meaning her naps have not started until around 4pm and then she gets to bed later because she naps so late. 

I will not lay down... even though I'm in my bed and taking a neb! 

She loves to try and put her own coat on

I have started a new adventure! The feeding tube community has done so much for us and I wanted to give back. I have become a Tubie Friends surgeon. Tubie Friends is a non for profit organization that puts medical equipment into stuffed animals for children who have medical needs. I had looked into getting Jillian one and realized all the hard work the organization does and decided to join the cause! This weekend I have put feeding tubes into 5 animals. We do not charge families for the bears (that are paid for at full cost). We ask families if they can help with the cost of shipping however if they are unable money is raised to cover that too. If you would like any more info I would love to tell you all about this great organization!

My Friday afternoon. Thanks Dan for the coffee!

PH probe and motlity testing resluts

As promised, here are her results about her testing last week at Children's. I got the call on Tuesday however we had people over Tuesday and Wednesday nights and Jillian has been up late and then up multiple times during the night all week. (last night she tried to pull her tube out in the middle of the night, I woke up to her pulling her extension set, thinking it was her passy holder... yeah thats not a nice wake up call) 

PH probe:
This is the test that measures reflux that comes into the throat. Jillian refluxed 69% of the time in 24 hours! The doctor said it should be less then 10%. They said 69% is really high. They questioned if the probe was in the correct place however the x-ray they did showed it was in the exact right place. They asked if it moved during the test. I told them that I taped it myself (and a good taping job if I say so myself) and the floor nurse measured it every few hours. It did not move, at least not from where it was outside her nose. They are thinking we might need to repeat this test to see if it comes out with the same results the second time around. That would mean a second hospital stay. We will see what they decide about this. While I don't wish for her to be refluxing 69% of the time, that would really explain some of the things that we see. (Is it bad that I am grateful that this test did not come back "within normal limits" because that would have sent us into an even more confusing spin) The doctor and I did agree though that a fundo is a last ditch effort and not something we want to do right now.

Motility testing:
During the test they told us that she obviously had a motility disorder, and then the head of GI came in and said that they thought they were viewing the wrong leads on the screen and while the test is going they can't view the other leads, however the data from those leads are still being saved so they can view them later. Upon further review there was not a problem in the small intestines like it originally thought. It had rithmic contractions like normal. The one thing that did show up strangely was that her stomach did not respond appropriately to food! BINGO! They said that maybe it was because there was not enough food in there however 55ml went in and they added oil to it to make it higher in calories. When she did take bottles daily, every 2 hours (over a year ago), they were only 45ml, so this is a larger amount then she has had in over a YEAR! They said that maybe we should try pushing her stomach to see what it would handle.  I then told them that it was not an option because apparently 55ml is enough to cause a miroasperation because we were now treating her for that from this little test. I explained to them that while Jillian did not puke during this test (amazingly) she did reflux a lot (this was the day after she refluxed for 69% of the day). I am not going to kill her lungs by trying to push her stomach. It was then decided that was not an option. The doctor said that makes Jillian a more complex case. She said that maybe we need to get all parties involved to meet. I would be game for that.

Outcome:
They want to start her on a new med called Cyproheptadine and take her off of her Erytho. I have now gone into detective mom mode about this med. With all of the other med changes we have done, I have know about the drug before hand. I have researched it and was knowledgeable about the medication however I had never really heard of this med before. As for most meds used for gastric motility, this is not the med's main goal. Motility meds tend to be meds for different things that have a side effect of gastric motility. With using a med for its side effects, you get.... all the other side effects, and the main effect of the med. Joy. This med can have some interesting effects. The main one is that it can make someone very sleepy... or stop sleeping. It also is used to increase appetite. This is one of the things that worries me because some people have said that their child gets so hungry they try to eat anything, even kids that medically can't eat. We will see. It is also controversial to put a child under 2 on this med and Jillian turns 15mo tomorrow. We will see. This next week we meet with GI and her primary doctor so we will see what everyone has to say then. We held off to start it until tonight because I don't like to start a new med and then send her to school the next day. I want to see what is going on and how she is responding.
They also asked us who we would like to keep as our main GI doctor (our current doc or the motility specialist). I, as respectfully as I could, said that we really wanted to stay with our current doc. There are a lot of things that go into that choice, but I was so happy that they gave us that choice!



On a side note about Jillian's microasperation adventure... her cough is still here. The sound of it changed. I am debating if I am going to call the doctor tomorrow or try to wait it out until her well baby check next week. At one point today she coughed for almost 5 minutes straight. The cough is starting to sound more and more like the cough she had this time last year when she was admitted for what they thought might have been whooping cough. She also cried almost all day today. If you know Jillian, you know that is not like her at all. We will see what tomorrow brings...

  

Oh warm weather.

This morning I was watching the news and it talked abou how the last time it was this warn was December 4th. I remember December 4th, not only is it my moms birthday but also the day Dan and I rushed Jillian into the ER because her lips turned blue twice. Well fast forward to the next warm day and thankfully Jillian's lips did not turn blue however she has a yucky cough. 

Her cough started over the weekend. Her temp has gone up and down all weekend. We have debated all weekend about taking her to see a doctor but decided it would be best for her to see her own doctor after having all her tests last week. 

This morning Jillian got up at 5:15 coughing uncontrollably. Even after a neb she was coughing a lot. I took her out of her bed at one point to change her diaper. I got done and set some toys next to her, instead of playing she crawled back into her bed. She did this again after I got her dressed. 

I called the dr office as soon as they opened at 8 and got her an appointment for 9:30. I hate driving in the car with her when she is sick and coughing. We have one of those mirrors however she is great at making bazaar noises and hiding her face. 

We got to the dr office and she just curled up on my lap. This is not Jillian. She is the biggest ham in dr offices. The nurse called us back. Their scale says she is up 2oz from last week. We will see what it is like on the scale at GI next week. 

Jillian was showing them nicely how grand her cough is right now. The dr came in. She showed me the report she got from children's that just said the endoscopy looked normal. We already knew that so no new news there with any of the other test results. 

The dr listened to her lungs. She said they sounded better then she thought they would with her cough. 

The dr said it is probably a micro asperation from the test last week where we pumped her tummy full of milk. Luckily we caught it before it became truely nasty as pneumonia. We are going to treat it like pneumonia though with antibiotics so it does not continue to get worse. We will see. She is in a good mood just super sleepy. She will play for a little while and then lay down. I called GI and left a message about it. We will see what they have to say. 

Now to go work on cleaning the floor. I can't wait til there is not salt everywhere. Salt that someone tries to put in their mouth. 

Jillian's day so far:

Ph probe and motility testing

Wednesday morning we left for Children's around 6:30am. It was snowing lightly at our house but the roads were not too bad, however it took us almost an hour and a half to get up to Children's. There was really only 1 lane on the interstate and traffic was varying from 25-65mph.
We got up to the hospital just before 8am. My mom met us there. We headed up the the GI clinic. One of the assistants that normally weighs Jillian was at the front desk and got us checked in. We were sitting and sitting and then stuff started to get a little strange. The transport unit came in with a stretcher. People were coming in with wheel chairs. There was a medical emergency in one of the rooms in the clinic. They called us back to the room closer to 9. Two nurses came in with us. They pulled out the probe which is an NG tube with sensors that is attached to a small machine. They tried to put it in the first time and she was fighting so much it would not go down, so they put in a little silicone thing and they were able to guide the probe right down her nose into her throat.
We then went down with one of the nurses to radiology to check the placement. Once we got her check in, I headed to admitting and my mom and the nurse took her into an x-ray room. I was coming back from admitting and I got to the elevators by x-ray and I could hear Jillian screaming. One of the receptionists was checking someone in and the other one was on the phone. It was hard to stand there being able to hear Jillian scream but not knowing what room she was in. After a few minutes one of the receptionists was able to bring me to the room Jillian was in. I walked in and they told me that they were having a hard time getting the probe in the correct place. It needs to be two ribs above the diaphragm. They had already moved it twice and she was not happy. They moved it a third time as I was walking in and that time was key. They put a piece of tape on it and then  started to take her out of the x-ray chair. As they were taking her arm out the tape started to come off. I then stepped in and taped it. Several months of taping a tube gives you a lot of experience with it. We then went up to our room on W1118.
The floor nurse and care partner met us in the room. The care partner got her vitals and then brought her in a few toys and a new blanket. She was so excited! The nurse went over all of the admitting stuff with us. We did her weight. She is down to 9.375kg. She is now at the 45th percentile for her height, however for her age she is around the 30th percentile for height.
For a ph study you have to keep a log of every time she sleeps, takes meds or shows signs of reflux. You have to press buttons on the machine for each different thing and write it down on a log. I know there were times were she would do something and we would forget to write it or press the button.
During the day my cousin Jake came over and hung out. He was inpatient on the same floor. He and Jillian are buddies. We spent the day trying to entertain her and keep her hands off the tube.
There was talks that she was going to need an IV and they were talking about needing to start it around midnight. I asked that if she needed an IV that we get it started sooner rather then later after her J tube feeding was finished. She is a hard stick and it is even harder if she has been off of her pump for a while. There is also a nurse down in the ER that has been able to get an IV started on Jillian after other nurses have tried and we told our floor nurse about her. Our floor nurse called down to the ER and was able to get her to come up and start Jillian's IV. She got it in on the first try. Normally it is around 5 tries to get it started. I was SO grateful that we got it started in the late afternoon instead of midnight! 
After work Brent came up. He went out and grabbed us all dinner. In the evening Jake was discharged. My mom left after dinner.
Around 9pm the nurse came in and asked if we wanted to start her feed a little early since we were going to need to shut it off around midnight and switch her over to IV fluids. I said sure. The nurse brought one of their pumps in and we started her feed. Then the bag decided it hated us. It primed just fine but then once it was set to run like normal, it continued to error every few minutes. After about 45 minutes of trial we figured out that it was the bag. Most likely a hole in the tubing. We replaced the bag and it worked fine. We all headed to bed a little after 10pm. At midnight a nurse came in to hook up her IV. I was up multiple times with her during the night.
We got up the next morning at 5:45. I got dressed quick and headed to grab breakfast. We learned that the cafeteria does not open until 6:30. I ended up grabbing food for us at Cafe West. I got back up the the room and we ate quick. We started to get Jillian ready and they came in and said that we would be heading down soon. With that the person to walk us down to surgery was there. Jillian decided she needed to poop before we left. We got her cleaned up (and the bed) and then headed down. Her GI nurse Lisa met us down in surgery. Then different people came into pre-op to talk to us. Because she is an aspiration risk they came and explained to us how they were going to try to prevent aspiration. They brought in some Versed and it kicked in fast. They were talking about who they were going to have take Jillian back and we said that Lisa would be the best choice because Jillian knows her. We then headed out to the waiting room. I ran back up to our room because I had forgotten to bring the log from her Ph probe down with us. After about an hour they came and told us to wait in the consultation room for the doctors. The wait in that room felt like forever. After about 15min the doctor and the fellow came in. They said there is some irritation in the stomach but they think that is from the tube. They said otherwise it looked ok but they were sending biopsies off to the lab to see if there was anything else going on. They said that the J tube had formed a track in her pyloric muscle and that to put her tube back in that we would need to dilate that area. We headed back out to the weighting room and after a little while longer they told us we could go see her. We went back and after a few minutes they said we could take her back up to her room. A nurse and a nursing student walked us back up to our room. We went through this weird part of the hospital that they don't use currently. We all were talking about how strange and creepy that area felt.
Once we were back up at the room our nurse came in and did her vitals. Then Lisa joined us up in the room with a machine to run the test. For the test Jillian needed to be laying in the bed or held in one of our laps. We started the test around 9:30am. For the first two hours they just watch to see what her stomach does with nothing in it. Then they give her a med to see what that makes her stomach do.
Around late morning the hospital lost power. We were in the dark for a minute or so and then the generators kicked on. A little while after that the fire alarms started going off. They had us just stay put. The fire alarm went off a few times.
In the early afternoon the fellow came up and looked at the test. You could tell by the way she and the nurse were talking that there was something going on. They showed us on the charts what it what suppose to look like and then showed us what Jillian's chart looked like. You could visually see that it was different. The fellow said that it definitely looked like a gastric motility problem. We felt a wave of relief come over us. Finally we had a name for it.
During the test a nutritionist came up. We talked about options to get Jillian to at least maintain her weight instead on continuing to loose. We decided to bump her up to 55ml/her for 17hr a day. She will still get 5, 15ml flushes of water a day too.
We then put milk into her stomach and intestine at the same time. She started gulping and swallowing a lot more. After 25ml of milk were in her stomach and 25ml of milk in her intestines the doctor came up. He looked at the graph and said that maybe they were not getting the full picture and maybe it was not as off as the nurse and fellow thought. He then said to put 30ml more into her stomach. I was so FRUSTRATED with him. Either he does not have great bedside manor or he is a short person. Either way I was getting so frustrated with him and the way he was talking to us. You could see that the nurse and fellow were too but they were trying not to say it. Honestly what the nurse and fellow had told us and showed us made a lot more sense then what he was saying. At this point I just wanted to cry. They were suppose to give us their full recommendations before we left however the doctor said he had a meeting and would not have time so they were just going to discharge us. I feel like he has his mind made up that she has nothing wrong and just needs a Fundo so he is looking for everything to prove that.
About an hour later the test finished up. Amazingly she did not puke at all during the test. Around 4:30pm Lisa and I took Jillian down to IR to get her tube put back in and Brent went to the pharmacy to get one of Jillian's meds. I waited in the waiting room since Lisa said it would probably be a mess.
When it was done Lisa brought Jillian back out and walked into the waiting room and said that Jillian was ready for a bikini because she now had an AMT G-Jet button! Lisa convinced then that Jillian was 10kg before and will be at on 10kg again because we are changing her diet. Apparently that worked because they put in a button instead of a long tube!
We then headed back up to the room. The nurse came in and said that we were being discharged and she would start to get the stuff ready. She then showed us how to use the new button. They said that the button should not spin because that can cause the J part of the tube to flip back up into the stomach. We packed up all of her stuff and headed out. On our way out a floor doctor stopped in and said that she had recognized me the day before and figured out that she was on Jillian's case on her first admission last February.
On the way home Brent stopped and picked up food for us and we met at the house and ate. Jillian and I fell asleep on the couch.
Friday morning Jillian got up at 7am. She was really fussy. I noticed that her tube had turned about 90 degrees since they had placed in. I called GI and left a message. I also called med supply and let them know that she changed over to a button and the fax for the supplies would be coming. Lisa called back and said that we needed to talk to IR. I called IR and we problem solved for a little bit. We figured out that before she had a 16fr tube and her button is a 14fr. They said that it would just take a couple of days for it to close around the smaller size tube and then it should not turn. Until the hole gets smaller we need to keep it taped.
All day Jillian was sleepy and spent a lot of time moaning. I talked to Lisa about IR's idea and told her about Jillian moaning. She said to give her some Tylonal because having that first tube change is painful and during surgery the day before they gave her a big shot of Tylonal in her butt for the pain. Jillian was asleep when I talked to Lisa so I waited to give her the med. She woke up an hour later and had a temp of 100.5. I gave her the Tylonal for the pain and temp. The rest of the day she continued to have a temp around 100.5. She would play for small amounts of time and then would go back to sleep.
In the evening Brent went to Walmart to get more of her acid reflux med because it only last 30 days once mixed and because of her being off of it for over a week, it was not longer full strength. He got there and they said the were out of it because it was a special order and it would not be in until Monday. I had Brent have them check to see if Kenosha had it and they did not either. I was rather annoyed. We get it there every month and have been for a long time. They know we order it every month. This means that poor Jillian has to use a med that is not full strength until Monday. The big problem with this is that she aspirates on stomach acid and if there is extra stomach acid in there she is more likely to aspirate!
This morning she woke up and still had a temp. You can tell she does not feel great. She will play for a bit and then just sit for a while. Her drainage bag from overnight was GROSS! It was green from liver bile and had a lot of clumps of blood in it from the biopsies.

We are still waiting to hear what they have to say about the results of the two tests. Please pray that the doctor looks at it with a clear mind and not clouded by his own opinions. We are feeling kind of defeated right now. We just want the best for our little girl. We want to give her the help she needs and it is easiest to do that when we know what is going on.

Thank you for all the prayers this week and all of the support. We really appreciate it.

On a side note, one year ago today, Jillian got her first feeding tube. She has come a long way in the past year! She is no longer stickily thin, and is more on track developmentally!


Wednesday:

Playing on the iPad

I am a doctor... see my stethoscope!

Jake eating

That is quite the face

She decided that she wanted to wear the PH probe recorder

Daddy came from work... the thing in the bed is the PH recorder

Our Doc Mcstuffins girl with her new blanket

Looking at the fish in the GI clinic

Even with a PH probe in her nose, she is still happy

Tubes everywhere!

Cheese!

Coloring her Doc Mcstuffins picture

Looking at the view

Thursday:

This is how she slept

Right before surgery

reading a book during the motility test

Friday: