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 January Sickness

The house has been hit by a bug. A coughing, sneezing, yucky bug!

Last Tuesday night it all started. Jillian would lay down, fall asleep for 10-15min and then wake up screaming. We did this until 12:30am. (It started around 10pm). We had no idea why she was screaming but with some Tylenol she finally slept for longer then 15min but was still up multiple times during the night.
Wednesday she was not herself. She just kinda sat at school all day. She did not do much. By the time we got home she had a 99.8 temp. The night started the same way. She would lay down, fall asleep for a little bit and then scream. Again the only way we got her to sleep was with Tylenol.
By Thursday morning she had a 100.3 temp so Brent stayed home with her. During the day she vomited 7x. We are not talking about a little spit up here. No we are talking about forcefully puking that starts with coughing... then starts gagging... then forcefully vomiting.... and ending with more coughing. We are talking about over 2+ ounces at a time. You can her her breathing in while vomiting, which is how she gets aspiration pneumonia. Now what does a child who has nothing in their stomach vomit? Well, a lovely mixture of stomach acid, liver bile and mucus. Her stomach can't handle anything in it. When she gets sick she gets mucus that drains into her tummy just like everyone else. The difference is that most other people can handle the mucus, but she can't so she vomits everywhere. Her lungs are also filling with mucus and she vomits (just like I did when I was little) to get the mucus out. This is making for a lot of vomit right now. She normally spends a good amount of time during her day swallowing reflux of stomach juices but at this point she is normally able to keep it in. By the time she went to bed on Thursday she vomited 3 more times.
Friday morning stated with vomit around 4am. Uncle Dan was able to work from home and take care of her. I was able to get off of work around 12:30 and come home. While Dan and Jilli were home in the morning I got to use my Christmas gift that Dan bought me... a house cleaner for a few hours to deep clean the house! When I got home I took over taking care of Jillian and she and I hung out. I was not feeling great with a runny nose and she was just exhausted. It was really good that I was home because during the afternoon I passed an ovarian cyst and had a hard time doing much.  She continued puking and needing nebs through the day. Her temp got up to 101.1 during the day but by night it had dropped. She also started to refuse her oral meds on Friday. She would clamp her lips shut and try to slap the syringe away. Most of the time when we would give her a med she would vomit. Sometimes right way and other times up to a 1/2 hour later.
Saturday morning started with 4am puking again. We all slept in a little and then got up and got a few things done. In the afternoon she purked up and was acting more like herself, although still vomiting and refusing some of her meds.  We were hopeful that the worst was over.
Sunday morning started the same with vomit around 4am. Brent had to be to Church early and Jilli and I were at my parent's house. She was still puking and pushing meds away. We were still doing nebs every 4 hours. We decided that it was time that she was seen. Mom and I took her to the Children's walk-in clinic on Mooreland road. We got there right as they opened at 11 and we are lucky we did . By the time we were walking into a room they were telling the people that were walking in that it was over an hour wait before they would be taken to a room! We did her weight which was off because she had all of her clothes on. I kinda wish I had made them do an accurate weight because I feel like she has lost weight in this sickness. We went to the room and the nurse did her vitals and her history. Her pulse ox was around 92. That is not where they want it. The nurse went out and I could hear her talking with the doctor. The doctor ordered a chest x-ray and a neb before she walked in the room so we could get those done as soon as she was done listening to her. She came in and listened to her lungs. She said that you could hear wheezing from her one lung and the other one was rattly. She left the room and the nurse came back in with the neb. As soon a the neb was finished someone from x-ray was there. Jillian hated getting the x-ray done. We walked into the room and she took one look at the machine and started to scream. I think she associates x-rays with tube changes because she normally grabs onto her tube and screams. The rooms do look similar. We got back to the room and her pulse ox was still only at 93 so they did another neb. The doctor also ordered some Prednisone  to help with her lungs. A while later her pulse ox was back to around 91. Then she started to do the cough.. gag.. and then she vomited everywhere. Once she was done vomiting her pulse ox went up to 96 so they said we could go home. The doctor said the x-ray was cloudy but not pneumonia, just and upper respiratory infection. They also put her on an antibiotic for an ear infection. We left and mom brought Jillian and I back to our house. That evening my mom came back and we all had dinner together and mom spent the night.
Monday morning started the same with vomiting around 4am. My mom had the day off because of the holiday so she hung out with Jillian and Brent and I went to work. She slept really late and continued to need nebs every 4 hours however she was not puking as often. By the time I got home from work she was in a good mood and playing. I was hoping that all the meds had kicked in and she was really doing better. She even managed to unsnap her pajamas, pull her tube out of her clothes, open the g port and was chewing on the J port. It was hard to get her to sleep but by 9:30 she was out. I hooked up her pump and gave her a neb at 10pm. I could smell that she had pooped s I changed her, did her meds and she went back to bed.
Tuesday morning started out the SAME way with coughing and puking around 4am. Have I mention that 4am and I are NOT friends right now. Luckily I got up to her coughing and was able to catch what came out. Brent gave her a neb ad we watched some Full House while we tried to get her back to bed.
This morning when I got her up she had pooped everywhere. Then I went upstairs to get her drainage bag and somehow during the night it sprang and leak at the bottom so there was next to nothing in the bag but the floor was soaked. I looked over at her at one point this morning and noticed her g port was open and the little silicone piece that holds the cap on is hanging by a thread. Luckily we get that changed on Friday, so until then it is taped. A little while later she was sitting on the floor and all the sudden a volcano of poop starts flowing out of the top of her pants. Right now her poop is lovely with all of the mucus. Needless to say it has been eventful around here today.
She is in a good mood today and will play for a while and then just get so winded from playing and will just have to sit and breathe for a while. You can still hear her breathing across the room. Right now she is taking a nap and she keeps squeaking while breathing.

Her doctor's office called me on Monday because they had gotten a report that we had been at Children's and wanted to know what was going on. I filled them in. They called me back a while later and said that the doctor wants to stop doing any shots for a while since she always seams to get really sick after. It is like her body cant handle the knock in immunity so then she gets every little thing and they really kick her butt.

Right now I am not sure of the coarse of this illness. I feel like one moment she is starting to act more like herself and then the next she is crashing again. I think if she is still not doing better by tomorrow she will need to go see a doctor again because at that point she will have been on steroids and antibiotics for 4 days. We are trying to be patient and wait this out but we don't want this sickness to get out of hand. So we will see what tomorrow brings and just hope that we sleep past 4am...

Just so exhausted

I'm sleepy

Cinderella Baby is good for keeping company during nebs

The boys holding her over the sink while she vomits. She vomited through the dish towels I was holding so this was the next closes thing

The walk-in gave her a backpack full of books that someone donated!

Her current meds minus the one she had already taken

Yup, thats poop

Mom... do you have to take my picture now!

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