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