and pneumonia continues

I'm snuggling with my baby girl this morning. My super snugly little one is still asleep at almost 10am. She did get up for a little bit and  get dressed and did meds. I then put her in her Super Seat to do her Pulmacort around 8am. I started the neb and she was sitting up and holding it and a few minutes into the neb her head fell to the side and she was sound asleep while doing the neb. I ending up holding her head up until she finished and then I picked her up and held her.
I woke up this morning to her breathing heavy (Brent has a cold or something that started last night so it was like waking up between two snoring bears). I got everything together for her neb and then picked her up and started the neb. She slightly opened one eye and then went back to sleep. She normally is up at 6am and this was just before 7. She also normally gives herself a neb and this morning I had to hold it for her.
Today her cough is worse then what it was. In the cough department I feel like we are moving backwards. I am hoping that it just means that she is getting the junk out of her lungs... I can be hopeful right?!?!
I called the pediatrician's office around 8:30 and talked to the nurse. When we picked up her Palmacort yesterday they told us a dose that was different then what the dr had told us so I just wanted to double check. I also expressed my concern that Jillian is still struggling a lot at times. She agreed that we should not be needing to do nebs so much at this point and we should not hear her breathing as loudly. She said the doctor gets in a little after 9 and she would talk to her then.
The nurse called back around 9:30. She said that I was correct in following the directions from the doctor and not the pharmacy. For a child under 12mo it is only 1/2 a vile of Palmacort. She asked if we had a pulse ox meter at home. I told her no. She then said that they wanted to add an oral steroid to try to help her kick this. She said they were going to call the pharmacy to get the script filled. We will head out in a couple of hours to get it.
It is 10:20 now and she is up and sitting with some toys. When all the meds are fully kicked in she will be smiley and play. She is still hanging out in one spot and not going really far. I can hear her breathing from about 5ft away, but at least she is happy.
We are going to keep her home from school for the rest of the week and we are hoping that by next week she is good to go back.
Yesterday she had 4 small poops. Today so far she has had one really small poop and I think I heard her working on more.... It has not been loose since that one poop on Monday afternoon. I'm glad she is not dealing with massive diarrhea on top of it. Her poop is going between a light yellow and a dark auburn color. It is normally a light yellow.
We will see how it goes with the new med. Hopefully it is the key to helping her kick this. I'll update more later. 

Pneumonia day 2

Today has been filled with lots of cuddles and nebs every 4 hours. She has up times with energy and times when she is lethargic. There are times when her breathing is closer to normal and other times you can hear her breath in the next room. Her temp has been off and on today too. 

I called the dr office as soon as they opened today and scheduled an 11:30apt. As soon as the pharmacy opened I called them to see if they could fill her script first (it was sent in as they were closing last night). They said they would put a rush on it and for us to come right over. We got there and they were still working on it but they got it done quickly. We got home and I gave her the first dose. 

We headed to the dr. Just before we left I gave her a neb. We had to wait for a while today ( they squeezed us in). The dr said she wanted to add a third med (pulmicort). She said her lungs sounded ok then but she had just finished a neb. 

We have just hung out this afternoon. She is just sitting in one place to play instead of climbing the world. I let her paint in a ziplock bag. She thought that was a lot of fun. 

This morning she had a normal poop. This afternoon I heard her poop while she was painting. She looked at me and laughed. I picked her up and the poop was running threw her pants. It was gross! I took her upstairs and put her in the bath. As I was getting her bathed she slipped and took in a mouthful of dirty bath water. She the proceeded to choke on it. I got her calmed down and then she squirmed and hit her head on the tub. At that point I was done with bath time. I got her dressed and then she pooped again. This time it contained to
the diaper but was an auburn color. Jillian's poop is never quite right. 

Right now she is playing with toys. It is nice to see her get little bursts of feeling alright.  She is funny. If you did not know her you would not be able to notice a huge difference in her.  She is a strong little fighter. She is still going to play... Today it is just stationary play instead of acting like a monkey.  

As I was about to hit publish on this post I got a call from Brent who was at Walmart to pick up her third med. He got there and they said they were out of the med and they should have it tomorrow afternoon. Please pray for the delivery to come early so we can get her started on it soon!

(Yes that's poop)

Pneumonia

The word I thought might be inevitable has come. She has her first official case of pneumonia. When she had croup a few months ago they said her lungs looked like the start of it, but luckily we caught it in time back then. 

Jillian has had a cough since we tried rice cereal weeks ago. It has gotten better and worse over the corse of time. When she was admitted a few weeks ago they said her lungs sounded clean. 

Sunday morning by around 5am, Jillian had been coughing off and on for about an hour. I was in that half asleep mode. Then Brent and I sat straight up to the sound of Jillian puking. It was a whole body, projectile puke that we had not heard in a while. Neon yellow stomach bile covered everything. We took her out of her bed to change her and she puked again, this time mucus. We decided it was time for a nebulizer treatment. We curled up and watched Jake and the Neverland Pirates and she got her neb. Once she was done she. Puked two more large amounts of mucus all over the bed. 

She kept coughing but we headed to church. Instead of going into service Jillian and I hung out in the loby and I gave her a neb. She was breathing pretty rapidly but she was not crabby, not not smily either. 

We went to lunch with my parents and grandparents at Applebee's. Jillian  gave her daddy and grandpa a gift. She pooped everywhere! Thursday she had two small poops, Friday she did not poop and Saturday she had two smallish so she was given a little extra laxative. It all came during lunch. The boys came out of the bathroom like they were just in a battle. 

After lunch mom and I stopped at a store with Jillian. She just sat dazed the whole time. We would show her things and she bairly moved. Once we got done at the store we headed to mom and dads to fill Jillian's pump and give her anouther neb. 

She was coughing again and pretty lethargic at this point. She was stomach breathing. 

After we finished her neb we hung out and I watched her breath. Her respiratory rate was around 70 and it should be between 25-40. Mom and I decided we would take her to the walk in. 

We got there and the nurse brought us in. Jillian's pule ox was at 92. Not where they want it. The nurse was talking about sending us to the ER. She took Jillian and I out get her weighed and my mom walked into the hall and noticed the nurse practitioner. She was from the family doctors office I have gone to all of my life, as well as most members of my family. 

The nurse practitioner came back in the room with us. We went over Jillian's story and then she listened to Jillian. She said she could hear wheezing. She sent us over for a chest X-ray. 

We walked in the X-ray room and Jillian had a small panic attach. It looks like and IR room. She started grabbing at her tube and crying. I think she tought we were messing with her tube. We got the X-rays taken and headed back to the walk in. The nurse practitioner walked in and said she wanted anouther pulse ox done and another neb done. She had a pulse  ox of 97. We then started a neb. By that time the nurse practitioner walked  in with the x rays. ( less then 10min after we got them done) she said Jillian had pneumonia. She showed me the x ray. The radiologist had drawn pictures and diagrams for us showing where the problem was. She has a infiltrate of the right middle lobe. Ie, pneumonia 

The doctor said that we needed to give her a shot of antibiotics. The nurse then came in and gave her a shot in each leg. She screamed. 

The NP then came back and said she was going to let us go home. She and the attending had been debating and she said if it were any other set of parents and grandparents we would have been admitted however she said she knew us and knew we could handle neb treatments at home and that we are smart enough to bring her back if anything changed. They put her on antibiotics and neb treatments every 4hrs. 

Where did this pneumonia come from? They think that she aspirated on the vomit of mucus Sunday morning and that caused it to get worse. 

Since we got home she has been going inbetween lethargic and slightly playful. If someone was looking at her as a normal baby you would not think much was up but those of us who see her everyday can see a difference. I think Jillian is so use to health stuff that it just does not get her down. 

Today we have a dr apt at 11:30 with her ped. We will see what they have to say then. 

  

The puke does not smell the same

We have started the switch to some formula. We are trying to make the Brest milk last so we are doing part breast milk and part formula. We started this weekend. We wanted to start her before all the formula was gone too so we can make sure she does not have a problem with it.

So far the most formula we have mix in during one day is 6oz of the 31.5 she gets.

We started mixing it into her night time bottle too. The past few nights it has just been 5 of the 15ml and the reast breast milk. Tonight we decided to see how she did with just the formula to see what is in store. She has only ever drank breast milk. For a couple if months she drank water, not well. She has had pedialight a couple times in the hospital, but otherwise it's just mommy's milk. 

At first she looked at Brent like he was tricking her but then she drank it. 

She refluxed it like normal and completely spaced out a few times. Then she did something that is quite rare with 15ml, she puked on me. About 1/2 teaspoon. A small amount, but it was some. To be expected. The saddest part for me, it did not smell "right." I know, your kid should not have a puke smell, but for Jillian it has been her perfume for so long. It just does not smell right. 

She almost puked twice on Dan after that, but save him and kept the puke to her mouth. 

In other news, she has a rash around her mouth tonight. I think it is from passy drool. We shall see. 

Tooth 8

Goodnight world. Tonight I popped through tooth 7. These days I seam to be getting a new tooth every few days. Tonight I have been a little sad about my new tooth but normally no one notices that a tooth is coming until I smile and show it off. Mommy thinks I'm working on tooth 8 already. Then I will have my top 4 and bottom 4 front teeth. Maybe I will be more excited about my teeth when it involves the tooth fairy :) 

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!

Reflux cough

Reflux cough, why must you come? 

Her reflux is defiantly worse with the cereal in. I'm debating if we can do this three more days. 

Last night she was more reluctant to take it and spaced her bites even farther. It ended up being over 10min, which is the ideal length of time. We were at my parents and had my grandma over for dinner. I fed her in her high chair just before we all ate. A few minutes into us eating she started arching her back a lot and fussing. Normally the rule is that she needs to stay in her high chair while we eat but I just could not make her when I induced the pain. 

During the night she started coughing. By this morning again she was coughing A LOT and you could hear her tummy refluxing. I vented her again. We use a 10ml syringe and I filled it to the top with liquid and air. You could see grains of rice cereal still in the mix of tummy juice. The past few days when I have vented her or has been white and clear. Today it was neon yellow. About 20min after I vented her, the g port popped open and at least another 10ml came out all over grandpa, her backpack, herself and the floor. It was thick and nasty. 

I could not get her cough to stop though after we got the gunk out of her tummy. It switched from a reflux cough to an irritated lung way cough from having coughed so hard. I gave her a neb to help with. She took it well. 

Today at church she kept coughing and then she would cry. We ended up just hanging out because you could tell she was trying hard to be quiet but it hurt. She kept throwing her head back. She is smiling right now when she is not coughing or trying not puke. 

Grainy

We have done two more times of 5ml of milk on the spoon and then 10ml of milk mixed with cereal. 

Here is a message I wrote to a friend about Thursday's feeding:

Her second spoon feeding ever. She did about the same as yesterday. She starts good and about 1/2 way through she starts shoving her passy in her mouth after every bite and sucking hard. She is willing to eat til the end of the food but she spaces out bites really long. We were sure she was going to puke on us about 3min after finishing eating. She started heaving but was able to keep it in. She cried off and on after. She did give a good burp though after eating today which she did not do yesterday. Her breathing is loud now from the reflux and is coughing. I'm excited though that even though you can tell it hurts she is still willing to keep trying. She is such a fighter.

Last night she took it pretty well too. Towards the end she was interested in most things other then eating and would not look at the spoon at times. She was sloppier with eating and more of it came rolling out of her mouth. By the time she was done she was arching her back a lot and coughing. She did not want anyone but her mommy. The coughing continued through the night and got nasty sounding. her reflux cough is distinctive. This morning when she got up she was still coughing and you could hear that her vocal cords were full of puke. I decided I would vent her because it is just not good to still be refluxing 12hr later. I hooked up the syringe and 6ml of air and fluid came out. In the fluid was little grains of the cereal still. It was still sitting in her poor tummy. There was some stomach acid and flem mixed in too. The cough has gone away again and her breathing sounds better. 

Is it weird though that she smells "normal" to me with the smell of puke on her breath? That she almost smells funny when she has not been refluxing. I guess I'm ok with her not smelling normal though, it is just strange to me though on days when she does not smell like puke. Today however is not one of those non puke smelling days. 

I went to change her diaper earlier and noticed little dots in her diaper area. It looks like the rash that's on her tummy. The tummy rash has come and gone this week. Today her tummy is not red but her skin feels like sand paper. I gave her a bath. We will see if it helps. She ended her antibiotics Wednesday so we will see what goes on now. Those antibiotics helped her poop though. We were able to go down .3ml of laxative this week. I know that does not seam like a lot but for Jillian it is. Her poop was kinda like sandpaper at times though too this week. Today she has not pooped yet which tells me the antibiotics are out of her system, I'm just hoping it is a smooth transition back to normal laxative poop. 

Its a GI problem

Today Jillian and I went up to Children's clinic on Moorland road to visit a feeding therapist for an evaluation. She had not had a feeding evaluation since she was inpatient in April so it was time to look at it again.

When we first went in we went over the Jilli health history. She looked exhausted just hearing it :) Then we talked about what Jillian does for taking food by mouth (1 bottle once a day of 15ml breast milk). She said she wanted to see how Jillian did with a spoon and with breast milk on a spoon.
Before we started with the spoon the therapist first tried with putting her fingers in Jillian's mouth. She was receptive to it. She felt around her mouth a few times and tried a few different things. She said that her oral motor skills looked good for never having finger food in her mouth. The only thing she did not do was move her tongue to the side of her moth that the finger was on, instead she always left it in the middle of her mouth. She said that was not a big deal though because currently Jillian had never needed to use that skill so her not doing it was not surprising.She said this showed Jillian was not ready for any finger foods like puffs.
 I had brought with one of the spoons that we have at home that she plays with while we eat dinner. The therapist put 5ml of milk in a cup that she spooned out to give to Jilli. At first she did an amazing job of eating the milk off of the spoon. She would put her top lip down and take it like she had always been eating that way. The therapist was really impressed.
Then She mixed a little bit of rice cereal with 10ml of milk. Jillian took this off of the spoon nicely too. She became less coordinated with it as she went on but for her first time spoon eating she did great. The therapist said she was really impressed and was not expecting that at all. Also as eating went on she went farther and farther between bites and would put her passy in between bites, which is Jillian's signal that it hurt, but she kept on trying her best. After she finished eating we let her sit in the high chair and we worked on updating things about her eating into the computer. This is when Jillian started to have a hard time. She started to reflux about 3 minutes after she finished eating. She was sucking that passy 100 sucks a minute, her arms and legs became stiff, she was bright red and she would intermittently yell out. It would be bad for a few minutes at a time and then she would calm again. She was trying to rip off her bib so we took it off for her and let her hold it. She wrestled with the bib like it had just tried to steal something from her. You could her hear refluxing, gulping, and her vocal cords sounded horse. Her breathing became more labored and varied from fast to slow. 
After about 20 minutes we decided it was time to show off her bottle skills. She spit out her passy like she is suppose to when I brought the bottle to her. She would not hold it but did a great job drinking it, in about 45seconds, which is a normal time for 15ml of milk. After the bottle was over I sat her up. After about a minute she started to reflux. It was like trying to hold an unhappy monkey. She was all over the place and very hard to hold because she was trying to get comfortable. She was sucking on her passy a lot, making swallowing sounds, and throwing her head back. From they was she looked at times you would have thought the ceiling was very interesting.
The therapist and I then talked. She said it pains her to see how much pain Jillian is in when she eats. That she has great oral motor skills and defiantly does not have an oral aversion. She then said she was unsure of the next steps. That a part of her almost said to not have Jillian eat by mouth anymore because she was worried that one of these days an oral aversion would form. That was the eating by mouth worth it? That because she has such great foundational skills that if she was able to eat later on without pain that it would be a lot easier to regain these skills since she already has them, then to fix an aversion problem. We decided that since for right now she is still willingly taking the food that we would keep going with it. We decided that we would try spoon feeding her 5ml of plain milk and then 10ml of the milk mixed with rice cereal for the next week to see if it made any difference. It did not in clinic today (it was almost a worse reaction) but that we would try it. She suggested staying with the 15ml because that is what has worked and we don't want to up the volume and change the form at the same time because then how will we know what went wrong if something goes wrong.
We also decided that staying with the stage 1 bottle nipples were best because she is sucking them perfectly and we don't want to mess with something that is working. She said that for now it is best to stay with just the milk and not add other things (except the rice), especially if we might be taking food away if she starts to struggle with the pain more and because we dont know of any possible allergies and we don't want to add problems. She said that Jillian is not a kid that we would be working on taking the passy away from anytime soon because it is a coping method and is helping her in dealing with the pain and in keeping oral motor skills.
She said that we did not need to come and see her again anytime soon but she is a resource for us and is here to help us in any way. She said to let her know how the next week with the rice goes. She said she would put a call into the GI about the visit.

Overall today would be a middle of the road reflux day. By no means was it her worse, but it showed them what a little taste of Jillian's tummy troubles where like. 

After we finished Jillian and I went across the street to Target to buy rice cereal. While we were there she was not her normal talkative smiley self. She just sat there, dazed.
Once we got home I changed her diaper. She had pooped out of it. She is not pooping out a lot right now but it is coming out with some force behind it causing most of it to be out of the diaper instead of in. While I was cleaning her up I noticed the inside of her g tube looked nasty (its clear) and I had just flushed it with clean water this morning. I hooked up a syringe and vented out 8ml of tummy contents. There looked to be some grains of rice cereal still in there from 11:30 and it was now 2pm. Yummy! I then flushed her with 3ml of clean water. She has been kind off all afternoon. She has been throwing herself around and not wanting to play. She has been having episodes of reflux too.
Also while I was changing her I noticed that her rash is coming back. It is looking better again this afternoon. I'm not sure what these little bumps are. Maybe just another mystery of Jillian. Hmmm....

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

Tooth 5

Today Jillian broke tooth 5. She got to watch the packers win too. 

Sleeeeeeep!

Today I'm exhausted. Her pump needed to be filled at 6am and I never fell back to sleep. I have been super sleepy all day but I tried to take a nap twice today and could never fall asleep. Now it is almost 10pm and I'm still awake. That might have something to do with this over exhausted feeling.

There is a slight possibility that my not falling back to sleep this morning nigh have something to do with Jillian (imagine that). While i was filling her pump at 6 she threw herself backwards. She does this when she refluxes. One if these days she is going to touch her head to her toes while refluxing with how she throws herself to try to deal with it. Her throwing herself is not uncommon. Normally it is once or twice in a row. This morning she did one throw back, then two, and then she got into this rhythmic pattern of throwing herself back that slightly resembled a seizure. It stopped after about 6+ throw backs. I knew it was reflux induced but it was still not fun to watch. It is kinda hard to sleep after that. 

I spent a little time reading into sandifords syndrome. It is classified by reflux symptoms that look like seizures. Neurology said that they think her seized like activity it not actual seizers but a reflux symptom. So even though no dr has officially said sandifords syndrome they have discribed it. Sandifords however is only the description of seizure like motions due to reflux. It cannot occur without bad reflux to begin with. It only affects something around 1% of kids with reflux. Once the reflux is under control sandifords goes away. Until such time it can be scary to watch. He reflux just can't seamed to be controlled enough to get rid of the sandifords right now. She is on the max dose of her acid reflux med (which helps a lot ). We could tell the difference when we upped her meds last. It made a difference for the better. We will see. She defiantly has less stairing spells but she also has never gone back rhythmically before... At least not that I have seen. Man sometimes sleeping is just so hard when you think about all the things that could go wrong in that time. I just have to put her in God's hands when I put her to bed every night, just some nights are harder then others. Filling the pump at 2am every night gives us a chance to check on her too. The plus side of getting up in the middle of every night. 

Jillian however has gotten good sleep today. She slept til 8:30am. Then she took over an hr long nap around noon and then took a long nap in the car. She was asleep by 8pm too. Either she is growing, getting sick or something. I guess time will tell us which one. 

Today we spent time as our little family. We went to target and Starbucks and then to big foot beach state park and Brent pushed Jillian on the swings. It was too cute! We then took a drive all the way around lake Geneva. Then we stopped at Walmart. We came home and Brent made me dinner. It was a nice day :) 

Well I'm going to try to go to bed...

A little tummy juice with that

Jillian's tummy has been moving SLOWLY the past few days. This is causing more reflux to a kid who has a rash and you can tell overall does not feel 100%. She is handling all of this better then many other kids her age would. 

Tonight she took about 1/2 of her 15ml before she refused to drink more. She took the first 1/2 fine but then she was done. 

Tonight I picked her up and noticed her leg was wet. I then noticed her g port was open. I closed it quick realizing that it was gastric pressure that most likely popped it open. Then I sat down on the couch and something felt wet. I looked at the pillows under me and realized they were soaked. Her stomach contents were on the pillow (ie that bottle she just had mixed with stomach acid... Yummy!) I took the pillows and tossed them in the washer. I guess her tummy just could not handle that bottle tonight. 

Her rash is looking better. It is not gone but better. It still fluctuates throughout the day but it does not start out nearly as bad at this point. Hopefully sometime soon it will leave. 

Her diaper rash is looking better too. Still not all gone but looking soooo much better. I think it is close to leaving. 

We will see what tomorrow brings. Today she and daddy stayed home because neither of them felt good. Hopefully tomorrow is better for them both. 

Ps: I want to make a big shout out to some people who have held our hands and our hearts. Jillian has an amazing fan club and we truly thank the people who stand beside her and us. We were watching how I met your mother tonight and they were talking about the fear of when you have kids you loose your friends but for us it has just brought our true friends (and family) closer. Thank you!