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!