Mom, the medical assistant

Wednesday Jillian's sickness started to really turn the corner. Thursday we were still doing nebs every 4 hours and she still sounded rattly, but today she has not had a neb yet. I feel like we have conquered this illness.  Life with Jilli, as with all kids, is a balancing act. We always dance the line of when does __________ illness/problem need medical attention. It is hard to figure out a lot of times. I was talking yesterday with someone at work and we were commenting on how many of the parents blame fevers/runny noses/coughes/ect on kids cutting teeth. It is the go to response and I would bet that over 95% of the time that we are calling parents to tell them that their kid has a fever or something else and needs to be picked up that it has nothing to do with teeth. Kids get sick. Yes, teething causes issues, but trust me it is not to blame for everything. We were joking that if I chose to blame stuff on Jillian's teeth that she would be dead because with her common things get bad fast.
I feel proud because I feel like this time we caught this at the perfect time. I know for most people their child having to miss a week of school due to illness would not be catching it at the perfect time but for Jillian that is impressively low for time spent sick. I knew it had to get to a certain level of "bad" before anyone would do anything for her,  but the trick is for it to not get so bad that it takes forever and days in the hospital to turn around. Her lungs were cloudy and headed for pneumonia but she got on good drugs before it got that far. This time we stopped the perfect storm of upper respiratory problems mixed with a stomach that cant handle drainage. There will be more in the future that we will probably not catch at just the right time, but I'm going to celebrate this one, because man, its hard to figure out the perfect time to take her in. 

In other news...
Today I got to help change Jillian's j tube. It is a good thing we had it scheduled for today because the end/cap for her g pot has been hanging by a thread and sometime during the night it came off so I had to use tape to keep the world from being covered in her tummy juices.

That should be attached to the g tube port

We got there and in the process of getting to IR I think they could have paid me for showing people around. I must have really looked like I knew what I was doing because every time I turned around someone was asking me for directions. Luckily I have been to many places in the hospital and knew which way to point each person. (Ok, that is a little odd/sad, lol).
When we went to check in they were having a hard time finding her appointment in the system but when they called IR they knew we were coming. A nurse from IR came to get us. We went back into this area between the different IR rooms. I was thinking as we drove up how medical this area of the hospital feels. I know we are in the hospital all time but that place is decorated to not look/feel like a hospital all the time. This area does not have anything to make it look less hospital. The walls are white and there are a lot of big machines. 
The nurse asked if I wanted to go back into the room with Jillian for the procedure. Brent went and helped once but I never have. I suited up in a white whole body jumpsuit and a heavy apron. I got to walk Jillian in and put her on the table. I showed them were the g port broke this morning and they got the stuff to fix that part.
Jillian fussed off and on before it started but once they got going she was fine and it is pretty quick. She just looked at the wall for most of it. As long as she did not look at the guy in the room she did better. She has a thing about tall, thin, males in lab coats. They said her tube looked pretty clean on the inside compared to most. I complimented Jillian on making it to a routine tube change. It is the first time she has gone 3 months without a problem with her tube. It normally clogs beyond unclogging or falls out about 6ish weeks in so making it three months like it is suppose to it a big deal. They were also talking about how cool her belt was and I told them where we got them. I LOVE her belts. They make keeping the tubing contained so much easier.
After it was over we headed back out of the room and I got all my fun clothes off. We had to stop back at registration because they forgot to do something and then we were on our way. It is always so nice when tube changes go smoothly.
After we left Jillian and I hit the mall to pick something up quick and then headed home. During the afternoon Dan hung out with Jillian for a little bit so I could call billing departments at different places that there are issues. I love it when I call someplace and they have no idea why we were sent a bill for something that our insurance already paid for. In the evening Jaime and Jason came over and we had such a good time hanging out and laughing.

In other news... her next round of testing has been scheduled for March 5-6. We are excited and nervous for this.

My ear is not bothering me... I'm just sticking my finger in as far as I can for fun

Daddy got me a new toy... Then pretended to arrest me with it!

I dont want this neb!

I think I am all that when I get to play with kitchen stuff

The times

So this week I made a new sheet for all of the people that take care of Jillian. I make them so everyone knows how to best take care of Jillian. Over the past year I have made several of these sheets with revisions of her different needs. Today I took a walk down memory lane and looked at some of the old ones. Here is a look at some of them. If you click on the picture and then right click on it and hit view picture, you can read what it says. It is easiest to view on an iPhone or iPad. 

The first one

April

August

There and back and there and back

As I got into my van this morning I looked at my gas gauge puzzled... why was it that low? I don't remember it being that low. It should not be that low after the last time I filled it... until I remembered that we made an unplanned trip to Children's and believe it or not folks, it takes gas to get your car there. And today I was getting into my car to drive there again, and imagine this, by the time I pulled my car into the parking garage the little lite saying I needed gas was glowing. (no worries, my van can go a LONG way with that little lite on, but I have a common gas station that I stop at on my way home from Children's)

Wednesday Jillian's teacher told me she had been kinda fussy and was acting a little refluxy. I was a little concerned, however we had just finished a 5 day trail of cereal Sunday night and she was still dealing with the cough from that so I just figured she was not feeling great. I felt yucky on Wednesday, so when we got home from work I set her on the floor to play and I laid down on the couch while Brent worked on dinner.
While dinner was cooking Brent came in to see Jillian. He picked her up and he and I were talking about how I felt yucky. He said maybe I should take Thursday off of work and I told him I was not that bad, plus it was picture day, and the fullest day of my class all week, and I just could not do that to all of them. Just as I finished saying that Brent started feeling around Jillian's tummy because something did not feel right. She was wearing a thick fleece one piece outfit and it was wet. He figured she had popped her g port open so he opened up her clothes and then got a very worried look on  his face. I looked at her (at an odd angle) and could tell something was not right, but I was not sure what. We took her clothes off to discover that the J portion of her tube was sticking about 2 inches out farther then it is suppose to and was not longer connected to her G tube. That wetness... it was caused from her tummy leaking all over the place out of the g port that we now could not close because the j port is what is at the end of the tube. We took her to her room, changed her clothes, wrapped the end of the g tube in gauze (to soak up drainage and keep the j tube where it was), and packed our bags. We hit the road and made good time since we left Genoa City around 6:30pm.

We got into the ER and checked in. They took a look at her chart at the check in counter and sent us in right away with the triage nurse (we skipped the waiting room portion). While we were doing her vitals people kept popping in because the computer did not have an option for J portion of of GJ tube, so it was put in a g tube out. It is typically a quick fix if a normal g tube is out and would have been something a nurse could have done quickly for us (if you have a button g tube you can  change them at home). However everyone had that disappointed, "I was not able to fix it" look as they walked out of the triage room. We got taken to a room right from triage. The nurse came in and looked and it and not too long after a med student came in and then the doctor. They sent her for an x-ray to see where the end of the tube currently was sitting. After a while they came back and said it was in the 1st part of her intestine (suppose to be in the 2nd) but the good news was that it was not in her tummy. They said there was a possibility that we could have it fixed tonight because there was a radiology fellow who might be willing to give in a try to just push it the rest of the way back in under the fluoroscope, he just needed to talk to his attending and look at the x-ray more. After a while the dr came in and said he the fellow was willing to try it. We could tell that the tube had continued to move out little by little but we were all hopeful this would work.  A little bit later someone from radiology came and got us (around 10pm). We took Jillian in and laid her down on the table. They were prepping all of the dies and such. They put the vests on us and then went to look at Jillian's tube. I looked down and noticed the end of the tube was now on the table. There was a moment of defeat that we all just looked at the end of the tube. It had to wait to fall out until we got all the go ahead for the try. We knew a fellow could not place a J tube so we knew this meant trying to put the tube back in that night was over. They attached a diaper to the end of the leaking g tube to catch all of the tummy juice that was flowing out (and smelling really BAD) We were taken back to the ER.

We then waited and waited... after almost 2 hours the doctor walked in. She asked if we had see radiology. We told her yes and what happened. Apparently she had been waiting for a call back from them. Since we could not get the j tube back in tonight and she needed fluids they were going to have to put an IV in and admit her until she could get into IR in the morning.
A little after midnight two nurses came in with the supplies to start the IV. We asked if they could do her foot if possible because she uses her hands so much. They found a vain in her foot and gave it a try... no luck! They then tried her arm. After digging and digging they gave up on that spot too. The two nurses walked out in-search of someone else to try. Our nurse and a new nurse walked in. The new nurse looked her over and found a vein and tried... no luck again. The new nurse left to find another nurse. This nurse brought in a little light (it helps them to see the veins) and looked all over her. They tried in her other foot... no luck! They then tried her hand... LUCK! After 4 nurses and 5 needles and 40 minutes we had an IV started. Now we just had to wait for a room for her. A little after 1am someone from transport came and took us to a room on 10 West.

We got settled into a room and the nurse came in and we started with all of the admitting questions. Brent went down and moved out car from the ER lot to the parking garage. While we were answering the standard questions a med student came in their round of questions. By the time we answered the nurse's questions, visited with two doctors and got everything that we needed it was close to 3am. I ran down to Cafe West to get a snack and then we all went to bed around 3:30.
We woke up at 6:30 to the first of the "scouts" (med students) doing their checks before rounds. Jillian and I curled up in the chair and cuddled til Brent got up around 7:30. Then we all curled up on the couch and watched TV. Around 7:30 a nursing student came in and did Jillian's vitals. Close to 9 her nurse and the nursing student came in and said that IR was ready for us now. We waited for transport and went down. The nursing student went with us as Jilli was her only kiddo. We got down to IR and they asked us about what happened. We explained and then handed Jillian over to them and Brent and I went into the waiting room. While we were waiting one of the IR nurses came over and had us go with her to a different room. Apparently we were suppose to have been given a teaching sheet and emergency kit when Jillian got her GJ tube however we never did. They gave us an after hours number to call if this ever happened again so that we will not have to go through the ER (opposite of what we have always been told). That way, if it has to wait until the next day to be put back in, IR can just admit us over the phone. They also gave us an emergency kit for if the clear g portion of the tube ever comes out (BAD). We can stick a catheter (yes one normally used in the bladder) into the hole a little bit and inflate it with water so it will keep the hole open until we get to the hospital. G tubes need to be replaced quickly after coming out because the hole will start to close (not to mention the stuff that can flow in and out of the hole without a tube in it). We then went back to the waiting room.

They brought Jillian out to us. You could tell she had given them a good fight by the look on her face. They then told the nursing student to bring us back up. It was a good thing we were with the nursing student though because she did not know how to get back up to the floor from where we were. We showed her the way and got back up. We then had to wait for the orders to be able to use the tube again. While we waited for that my parents came up. They had a struggle getting up to the room though. Apparently security was being hard that day (there had just been a missing person in the hospital) and despite security calling up the the room and talking to Brent, they would not let them come up until our nurse oked it. She looked in the computer and my parent's names were on the list... all of the lists we had ever made during our many visits. No one could figure out why they would not let them up. Eventually they let them come after several people on the floor working on it.
Shortly after mom and dad got to the room the nurse and nursing student came in with Jillian's meds and milk. The nursing student had never used a feeding tube so we gave the go ahead for teaching time. At this point the tube is our normal so why not let someone new get to learn on it. We got all the meds in and started on the feeds.

Mom and dad sent us down to grab some food and while we were walking back the GI team that was on stopped in. We met them as they were leaving and they told us we could go home soon! We started to pack our things up. The nurse brought in our discharge papers and the med student took out the IV. We were free to go. We leaded up the car and left around 12:40.
We got home just in time for Brent to do a conference call. 

As the afternoon went on we were starting to get worried. Jillian was still not releasing fluids out of her body. We changed her diaper Wednesday night before we left for the hospital (6:45pm) and she had a barely damp diaper at 6:30am Thursday. We changed her diaper right before she went down to get the tube changed and it had a very little amount in it.... and then nothing. It was now almost 5pm and she had a dry diaper. The discharge papers said to bring her back if she had a dry diaper for 8 or more hours and we were hitting that point. Brent and I decided we would give it a little longer. Just before 5 I heard a rumble sound. Jillian and I had been cuddling on the couch so I lifted her off my chest and as I lifted her my arm that had been under her butt still felt warm... poop! When she is in the hospital they have to give her 3ml of laxatives or no laxatives because nurses are not given the discretion to decided if her poop the day before was good or not, so it is full dose or no dose. She needed laxatives to help start her body back up so she got it all and the poop came out like it! Brent came and grabbed her while I took my hoody off and wrapped up the poopy blanket. We decided there was so much poop it was just best for a bath. She got all cleaned off and then we cuddled some more. Since then she is peeing better. Still not completely normal yet but getting better.

This morning we woke up early and got back in the car and drove to Children's again. This time it was a planned visit with GI. We got her weight 9.5kg (we need 10 for the button) and headed to the room. A new nutritionist came in (the new one we met last time is now on maternity leave) and gave her the monthly update. She said she would send a script over the home delivery company for the formula (we only have a couple weeks left of breast milk) and a new script for the pump explicitly stating why we need it (our insurance company has decided they think she is not medically necessary to have a feeding pump thus they are not going to pay for it... since June!). Our nurse was back this month (YEAH!) so we filled her in on everything. Then our old dietitian came in the room. She had seen Jillian was in the clinic and just had to see her so she came and played with her until the doctor came in.

We talked about how the trial with food had not gone well and how we stopped it at the request of the feeding therapist. I told her how the cereal was still sitting there 12 hours later. She said that the feeding therapist said she was really impressed with Jillian's skills even through all of this. The doctor wants us to try adding a 10ml bottle of water in the mornings again to help keep her oral motor skills... we will see how that goes.
The dr said that she was going to consult the head of their motility department about her case. She said that this might all improve once she starts walking because gravity can help, however Jillian is kept upright all of the time currently and has been all of her life. She said that if she starts walking and things don't improve, that is the sign that we are defiantly in the this for the long hall. She said if things are not better by 18mo then we are going to have to look at more testing again. She said that we would need to think about our options at that point, including doing the nession. She said that she did not see a real problem with that because Jillian does not have a mitochondrial disorder, and I stopped her and reminded her that we still had not completely ruled that out because of the family history with mitochondrial disorders. We talked about the family history again (something we had not done in a long time) and I could see the wheels turning. She then took a look at Jillian and said she would see us back in December. While I was getting Jillian dressed the nurse came in and said that they want us to stop in for a weight check in November since she will be switching to formula and they dont want there to be a big weight issue that arises and no one catches it because she is not weighted for so long. The dietitian then stopped in and told us she was working on the scrips and they would be sent right over.

Jillian and I then headed home. We stopped and got gas and ran a few errands. This afternoon I have gotten to talk with the insurance company and two hospital system's billing departments, but best of all, while I typed this I got to cuddle with my baby girl!
We also have gotten a few more sets of eyes though all of this to look at her random rash (no one knows what it is) and several sets of ears to listen to her cough that developed from the food. 
Well, now she has woken up, thus thinking she can help type, so I better go before she takes over and this becomes unreadable!

Securing the GJ PEG tube part 2

Ever have those times when it just clicks. Something just makes sense. The other night I was looking at Jillian's rash on her belly and thought that we needed to have something holding her tube in place for a little bit that was not so "hugging." I then thought about the really nice belts we were saving from kangarootique until she got her button. I was sad we could not use them now. Then it came to me. The belts have little "windows" that you put the tube through. What if we cut an ace wrap small enough to roll up under the window and use that to hold it in place. Brent cut the ace for us and it worked! This is my new best idea for holding it all in and safe. We are looking at ordering a few more belts from kangarootique!

Securing the GJ tube~ The belt closed over GJ tube

Securing the GJ tube~ The inside of the belt with 16fr GJ PEG tube

For more ideas on how to secure a PEG GJ tube see this post

On a side note tomorrow we go for the feeding eval. I know this sounds bad but in praying for a bad reflux day so they can see what the worst is like. I never wish pain on her so wishing for a hard day for her is a hard concept for me but I think a hard day tomorrow will overall do her well. Sorry babe! 

After daddy gave her a bath

Don't Mess With a Mama Bear...

watching Pooh in Gastric Emptying Study

Friday morning we did Jillian's gastric emptying study. I was a little nervous about her needing to lay still for 90min. Brent had a comp day from work (he put in over 120hr during the last pay period) so he was able to go with. She laid still so nicely. She fussed when they first put milk in her tummy though the g port but after a few minutes she stopped fussing when they wrapped her up tight and put on Pooh Sing-Along-Songs (maybe Jillian needs that for her birthday...). She just watched it and played with toys. She fell asleep and slept for about the last third of the test. We woke her up when the test was over. They told us that her doctor would have the results within 24hr and that it might take a week for them to call us about the results. We then left the hospital and headed over to Mayfair Mall to have them look at my iPhone.
Once we got to the car in the parking structure (9 spot) we decided we would hook her back up. The pump kept erroring but eventually we got it to go for a little bit. Once we got to the mall they told us it would be an hour wait for them to look at my phone. During that time I lost track of the NO FLOW OUT errors that occurred. After lunch we went out to the car to try to flush the line to see if that was the problem. No movement at all... grand! We went back into the mall quick and they replaced my phone because the broken part could not be fixed.
We then headed back by the hospital. On the way I called IR and was able to talk to the radiologist that we have worked with before and have a good relationship with. He said to stop in and they would see if they could unclog it.

Sleeping during gastric emptying study

We got in and a nurse (she helped with the morning test) took us into a prep room and tried with no luck to unclog the tube. She then left the room and came back in with our favorite guy and the head of IR (he did not introduce himself). They tried and said that it was clogged and would need to be replaced. We asked that since were there if we could just change it to the button instead of coming back next week. At first the answer was no. Then a nurse came in and said maybe. Then she came back in and said that Jillian did not weigh enough to have a button... WAIT... WHAT?!?! She said she needed to be 10kg and she was not. I asked for her to be weighed and she was around 9.1kg! They then took Jillian back to just change up the white tube in the middle of her tube. After they brought Jillian back to us our favorite radiologist came in. He explained that the 10kg was a new hospital policy that was going into place but it was not a hard fast rule. We talked about how GI and Surgery had referred her to get it changed and they both knew her weight and knew her story. He said that if they were both good with it then ok, he needed to do something quick and then he would be back. At this point we were under the assumption that she would be getting a button the following Friday like planned.

I got my tube!

Then the head of IR walked in... Change tone of everything. He then told us that he had been at the hospital as the head of IR for 7mo and based on his experience they are implementing a new policy that to have a button you have to be 10kg. I asked why. He said there is less problems. I asked for more details. This is where it got interesting. He said moms don't blog about bad things, people dont talk about when children die from tube placements going bad and that Kimberly-Clark has a lot of money to invest in people liking their product and that they buy out people's opinions! He said that he did not know why I wanted a button and that it is like a nice shiny sports car but you cant keep it's engine running because it has to be changed every 3 months (something we knew... something that is true of feeding tubes). That if he had a child that needed a tube they would only have a PEG tube. That he could not see how something that is sticking far out of her would be interfering with her daily life (it most definitely does...). He insinuated that buttons are dangerous and could cause death. He kept saying that they could flip up into the stomach (something that could happen with any lengthy tube be it PEG or button). He said that even though GI and surgery are involved with tubes IR is the one that has to deal with them. He insinuated that we wanted to switch to a button for us and it is not in the best interest of Jillian. He acted like we were trying to hurt Jillian. I was so offended and ticked off. He said that he prefers a child be 16mo old before getting a button but he would compromise with us at 12mo.
I asked him why no one had told us before about this 10kg rule and he said that no one knew about it but the rule was being put in  place by a joint decision between the three groups... huh? No one knows about this but we decided it together.
 He did ask our favorite radiologist what he thought and he said that he agreed (he maybe said 20 words to express his agreement). I wonder what he would have said had his boss not been there. This guy was just going to go ahead with doing it so I find it hard to believe that is entire opinion changed.
If the head of IR had not insulted us, groups of people we belong to and been difficult maybe we would have just left saying fine, if its a policy then its a policy, but instead we are mad. But this is also the second policy change that Jillian is stuck in the middle of that could change the outcome of Jillian's care. I am annoyed with policy changes that change things without anyone knowing about the new policy before the procedure and then it changing things. There is obviously a problem with communication. 
Since we got home that day I have been researching problems with GJ buttons... and after reading every article on the first 3 pages of a google search on the topic I have yet to find a difference in problems with the PEG and button. I talked with people from Feeding Tube Awareness and they said that they don't know of several of the things that he mentioned or that they are opposite. I have found a study of GJ tubes that did not differentiate between the two types of tube and said their is a 0.4% chance of death with a GJ tube placement. That are low odds and considering that these tubes are placed in medically fragile people 0.4% death rate is better then I would have thought.

Daddy looking at her 4th tooth coming in while we waited

So now what to do about it. We are looking into that. We think a button would make Jillian's life easier (and yes in turn ours) but if you think we do any of this for our convenience you are sadly mistaken. We are the ones that get up at 2am EVERY night. We give up sleep, money, time, relationships, and energy for the best for Jilli. You try buckling her into a carseat with a PEG, you try helping her become mobile with a PEG, you try finding close that work best with a PEG. We do this all out of the love of our daughter. So next time you want to mess with this mama bear, dont forget I have claws.

blood at site, more puke, mood changer, new pump and croup

Blood at site:

neb on the left, feeding pump on the right

Monday night Jaime and Jason came over for our weekly dinner. After the boys finished watching Men's Fraternity and us girl had chatted (Jilli played with her shadows on the wall and played with bubble wrap) we got back together and had yummy strawberry shortcake! We utilized the extra hands to help with changing her pad and cleaning her tube site. When Brent was wiping around her site some blood came out. Just a little. We are going to watch it...

Mood Changer:
Monday night I fed Jillian her bottle late. She was having such a good time playing I did not want to disrupt that. Around 8:30 I figured it was time... I gave her the bottle, which she played with, so I took it away after 10ml because she was getting so much air in and I had restarted the feed multiple times. Within a few minutes she started getting all wiggly and arching her back and no longer smiley. It was a 180 flip. Jaime was commenting how crazy different she was within a few minutes of eating! Eating just a little bit makes her so uncomfortable and it is hard to hold her because she throws herself all over! Oh baby girl.

Yellow puke... I know it looks like pee

More puke:
Monday we got to experience more puke. Yellow highlighter puke.

New Pump:
Jillian got her new pump Friday but we were instructed to not use it until the nurse from med supply came to teach me how to use it. Monday I read the instruction manual and figured a few things out. I also read a few blogs/websites about the pump. It is a little different then her other pump, but not too much. It is so light compared to her old one. So far I am liking it!

Croup:

At the Walk in Clinic

Since Friday night Jillian has had a cough. Sunday she started puking yellow. Yesterday she slept most of the day. I decided to take her to the walk in today just to make sure it was all ok. I figured it was just allergies and I did not want to over react. It it the mom balance.
We got to the walk in around 11am. We waited in the waiting room for a while and Jillian made a little girl smile. We were called back to triage and they weighed her (20lb) and measured her (50th percentile) and then we tried to get her pulse ox. It took 10min to get it to read over 95... We got it up to 97... but most of the time it was hanging out in the low 90s.
We then went into an exam room. The PA came in Jilli was sleeping. She did most of her exam without Jillian flinching. That is so not my 15min napper! I showed the PA the picture of her puke on my phone and video that I took of her cough during the night. Jilli kept falling back to sleep. The PA also looked at Jillian's tube site and said that it looked good, we had it secured well and there did not look to be any infection! Yeah!
She then sent her for a chest x-ray. They had a hard time getting the right angle. We then went back to the room. After a while the PA came back and said that Jillian has croup and we needed to start her on a nebulizer and steroids. She said they were working on finding a neb for her since my neb only has the adult part and not the kid mask. They left to find one.

Getting a nebulizer treatment

Carley the dietitian called while we were waiting and said she got my message last week and had lost my note and just found it on her desk. I have so done this! She asked how Jilli was and I told her we were in the walk-in with croup. She said that she was not going to change anything while she is sick and will see us next week.
The nurse then came in with a nebulizer and a packet about the visiting nurses. I said that the VNA had been at our house that morning. She looked at Jilli (hooked up to her backpack) and laughed and said she was sure they were. lol!
We then headed to the Walmar
t Pharmacy to pick up her neb meds and steroids. It took forever to get the meds (over an hr and a half) but our favorite pharmacist was there and we talked quick about each of our tubies.
We headed home and I put on a Disney Sing Along Songs movie and tried doing Jilli's neb in her chair but she was at an odd angle for it so I held her. It was a scream fest. We cuddled and she slept.
My cousins Jake and Dustin came over for dinner and Brent and Jake build Jake's new computer. Jillian liked the boys. I taught Brent how to hook up her new pump, he gave her a neb and then the boys left.

cuddling with mommy

We have done one more neb since. It is breaking up junk in my lungs too. Sometimes I forget that my lungs suck until I do something that make them work better. I just live in a state of them not working as good as they should, and I bet most people would seek medical treatment if they felt them all the time, but to me it is normal. I guess we each have our own normal :)
I was going to call and get her the next shot she needs but not while she is sick. She is ending up really behind with this one... Osp! She has to not be recovering from something though for her to get it.
Jillian and I will be hanging out at home for the next few days so she can get nebs and rest. She has a follow up with one of the pediatricians on Friday afternoon.  

I would like to do a shout out to the amazing people at the walk in at the Lake Geneva Aurora Clinic. I have had a lot of issues in the other departments of that clinic however the walk-in is great. The walk-in in Kenosha will not touch Jillian because of the tube. Many tubie parents struggle to find care for their tubie other then at a Children's hospital, even if it is for something that has nothing to do with her  tube. Thank you for the awesome care we got yesterday and to be willing to see my tubie. It means a lot to this mom!

In jumper reading a book

Coughing, yellow puke, insults, back arching, stablizing, bath, and new pump

Finally gave in while mommy ate

The past few days have had a lot of little things going on...

Coughing:
Jillian started coughing on Friday. Her allergies are bothering her and her nose is running. Friday night into Saturday was long because she had a NASTY cough again. It is one of those coughs that wake you up and scare the crap out of you! Luckily by the next day her cough did not sound as bad although every time she coughed she would cry. Poor little one. Allergies just sneak up on her and kick her butt!

Yellow puke:
Sunday morning Jillian was sitting on my parent's white carpet all dressed for church. Brent was about to hop in the shower and I was getting ready. All of the sudden yellow liquid cam spewing out of her mouth. A LOT of it! I felt like we were back in the days of her eating bottles. It just kept coming and coming and we were grabbing everything we could to catch it since we are not as prepared for eruptions any more. I had time to go into the kitchen, get a bunch of paper towel, walk back to the living room and still was catching more that was coming out. It was a mess! A 80's neon yellow mess!

Puke on her clothes... it was on the white carpet too

 I called GI because we have never had puke like this before. They called and said they think it is because she has a runny nose and that we can give her a neb treatment if we want. She has had 1 neb treatment before in the ER back in March but if I am going to do a neb treatment at home I would like more info then to just do one over the phone. I know how to do neb, I own my own nebulizer, but she is a baby. I also don't keep the standard neb meds in the house because I take something that is a higher dose and more pure. We will see how it goes.

Insults:
I have heard little comments before from people that were not kind about Jillian. Most of them have been from strangers that don't know better so we take time to educate them. I find that most people are so kind about Jillian's tube and we have only had a few awkward situations while out with Jillian and most of them have just been people staring at her for a really long time. This weekend we were at a family function and someone who is closely related family said some of the most hurtful words I have ever been told. They crushed my heart to a new level. A few people in the family suggest every time we see them that Jillian would be "better" if we just let her eat... AHHHH. Sometimes I wonder how many times I have to explain this. Saturday the comments where taken to a new level! Someone had the audacity to infom me that they don't think I have tried hard enough to get her to eat... WHAT? Oh hun, you are sadly mistaken. The party was in a park so I excused myself to take Jillian on a walk. We came back about 20min later and then was told that she probably does not eat because she does not like what we give her and if we just gave her donuts she would eat... WHAT! Man, this was crazy! We then left. I do not need to be attacked like that! I have heard other mom's complain about people's awful comments but I never thought I would hear them. I have always known that part of our family thinks I'm crap, but it is a different thing for them to actually say it outloud! I am trying to figure out what we are going to do about this. We have educated til we are blue in the face. We have told them what is going on with Jillian. What do we do now? How much is enough even though they are family?
With all of that crap on Saturday afternoon, Sunday God brought me just the people that I needed to see! He is amazing that way! I have always had a a few extra sets of parents and I was surprised at Church on Sunday that they were there! Sometimes just the comfort of being with someone is enough! We hung out with them and had a lovely lunch with them and some other people from Church. It was amazing! Their son is who I learned about tube feeding from. I use to baby sit him when he was little and did tube feeding and feeding therapy. Knowing this family has made all of this easier and not as scary! It ended the weekend with a smile!

Back Arching:

back arching from reflux

Saturday night I forgot to give Jillian her acid reflux meds by mouth so they needed to go into her g port. I gave her 1.3ml of meds and a 5ml flush of water. This caused back arching and tossing for over 30min. I am going to have to talk to GI about this next week. She seams to have a lot of pain anytime we put things into the g port.
On Sunday afternoon Jillian started screaming. Not crying, screaming at the top of her lungs for an hour. I vented her g port and that seamed to help. I am not sure what the problem was.

Stabilizing:
We have been using two ace wraps to hold Jillians tube so it does not move. Saturday night we went and walked around Gurnee Mills and then got dinner. At dinner she was very fussy. We noticed that the rolled ace wrap was missing. We ended up using her ear thermometer that we keep in the diaper bag as a stabilizer with the other ace bandage wrapped around that. Who said we can't be creative!?

securing PEG tube with thermometer

 Bath:
Jillian has stated to love bath time! Yeah!

New Pump:
On Wednesday night I on my way home from work I called med supply to order more supplies and to see if we could get an Infinity pump. We currently have a Kangaroo Joey and I love how user friendly it is however it is not able to tip and is bulky in comparison to the Infinity. They said that they stock the pump and that we could switch. They delivered the pump on Friday and a nurse is coming out to teach us how to use the pump tomorrow morning. I am actually a little sad to be giving back our Joey but I think this will be the best move for Jillian moving around. They also sent us a new backpack for the Infinity that is super small and will fit Jillian really well (it is too small to fit me)

Snuggle time with daddy and George

Securing the GJ tube

We have tried MANY ways to secure Jillian's GJ tube. It is a 16fr tube. Her last tube was an 8fr. So this is double the size tube! It is not super flexible either. It needs to stick out straight for a couple inches otherwise it pulls the hole to the side. Here are some of our pictures:

Venting to a diaper... just a cut gauze around it

Just a g tube pad and PEG tube

g tube pad and belt... the tube does not sit right in the belt for now... can't wait for a button so we can use these!

Securing the GJ tube~ G pad and modified tension loop

Securing the GJ tube~ tube pad and rolled gauze wrapped around the base to make it stand out and then looped around the tube going back down to hold in

my cute g tube pad and a hand holding it :)

Securing the GJ tube~ Rolled gauze like before just the gauze covering the entire loop

Securing the GJ PEG tube~ rolled ace wrap and wrap going around... best solution so far!

picking out her g tube pad each day... how we let her take ownership of everything we put her through

Maybe at somepoint I will write all of the details of how we do each of these tapeings. Hope just these pics help.

To see my updated post on how we secure her GJ tube please go click HERE

All of her g tube pads are from Kangaroo-tique! We love their products!!!

Fall in July!

No, I was not playing with my tube in the car

Saturday morning we woke and my daddy made Swedish pancakes in a cast iron pan. YUM! Dad, Dan and Brent went to the music store and mom, Jilli and I went to Target, Bed Bath and Beyond, Gordmans, and Kohls. We also got to see our friend Beth outside of Bath and Body Works! In the afternoon Brent headed to our friend's Julie and Skittle's wedding. He was DJing. Mom, Dad, Dan, and I re-taped Jilli. We are working hard to figure out the best way to tape her PEG tube. It it so thick.
We headed down to Taste of Wisconsin down by the lake. Jillian slept. During the day we switched her over to Tylenol from oxy. We went back to mom and dad's and Dan went to help Brent pack his gear up. Dan headed home and Brent came back to mom and dad's. We headed to bed after he got back.
Sunday morning we got up. We all worked to get Jilli taped and ready for church. We were all just about ready to head out the door and she pooped all over, including her tape! We got her cleaned up an then headed to church. Jilli made it through the whole service in the sanctuary in her stroller. After church we had the annual Classic Cruse to Church car show. It was chilly! We had lunch out side and talked to a few people. Brent, Jillian and my cousin Jake walked around and looked at the cars.
After we left Brent and Dad went to Brent's grandparent's to help get their house ready to sell and to my grandparent's to fix their computer. Mom, Jillian and I went to Gurnee Mills. We found a tummy time pillow that will be helpful once Jillian can be on her tummy again. We also found some new clothes. We loved looking at some of the fun expensive stuff at Buy Buy Baby! We then headed back to mom and dad's house. We packed up and we all went to dinner at Noodles to use my birthday coupon. We came home and unpacked!
Monday morning Jillian slept in a little. She peeded through her bed around again! I installed her new carseat (see blog post) and we went to Walmart. It was the first time she sat in a cart. We have a cart cover thing the make it softer and nicer. She was sleepy so she had a kinda hard time staying upright but she did a great job. We came home and worked around the house a little. She is able to sit up for a little while right now and then she cries in pain. We have not put her in her jumpers again since surgery. We are also mainly giving her soft toys because she waves toys all around and ends up hitting herself and she cried if she hits herself with hard toys. I also moved some stuff in the livingroom and made Jillian a section in the livingroom for her toys. Man toy storage is kinda a pain.
Jaime and Jason came over for dinner :) I love having our weekly dinners with them. It is so uplifting!