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