What a week

Ever had one of those weeks that you are glad is almost over? That would be this week.

Last week we got to be a part of my cousin Jessica's beautiful wedding. Jilli loved seeing all of the people and it was nice to see family. Welcome to the family Ryan!

A weekish ago I had anaphylactic reaction to latex. It landed my butt in the ER for several hours. I have not been in the hospital for asthma since a couple of months before my wedding (5 years ago) so I am not use to is anymore (there was a 6 year time frame where I frequented the hospital for asthma issues). I had never had a full anaphylactic reaction before. I am allergic to apples and it cause my throat/lips to tingle however it has never sent me to the ER. It has been a while since I have seen an ER move that fast. My respiratory rate was so low it was making things flash and beep. Within 15min of entering the ER I had an IV started, shot of epi, muscle relaxer and predisone in the IV, start of an hour long run of a run bag of IV fluids, and a neb treatment. Before I went into the ER I did a neb treatment and took 2 Benadryl. Within an hour and a half time frame I had 3 nebs. The doctor said when I arrived I was not moving air however after all of those drugs within a couple of hours I was able to function. I would bet that it I was not a moderate asthmatic that knew what they were doing they would have admitted me however they let me go home. I have been on nebs all week and predisone. Today I am starting to really start to be me again. It has made the week long.

Jilli has been taking nebs this week too. She had a broch on the 23rd. They say that recovery from those are quick however with Jillian it takes a long time to bounce back.

Tuesday I had a follow up with my doctor about my trip the the ER. We decided that it was a good idea that I now carry an epi pen and stay far away from latex (I really want fries and campfire sauce from Red Robbin right now but they have balloons there). After my appointment Jilli and I went and spent time with my grandparents. It was good to catch up with them. Tuesday night was spent trying to get my epi pen. Apparently our new insurance covers only a couple of dollars of the over $300 pen. I found a coupon online for $100 off however it was still a crazy price. I kind of needed to pick it up that night though because I was taking a bunch of 4K kids to an apple barn on Wednesday and wanted to be safe.

Wednesday we went to the apple barn. The parents of the kids in my class probably think I was crazy because I did not touch anything while I was there but the field trip went well. Before I left for the apple barn Jillian's pump decided that it did not want to work. It just kept erroring over and over. We had a problem with it last weekend with her pump turning off in the middle of the night for several hours so she missed several hours of feed. By mid day Wednesday I was ready for her pump to take a flight (this is the one that they switched out for a month ago and honestly I have disliked this new one for a while, it runs slow and the battery sucks and it does weird things) I called med supply as I left work and they said they could switch out the pump. I was on my way to Milwaukee to get one of Jillian's meds anyhow so we went to their main office. We were there for a while. Jilli and I then stopped at the zoo for about an hour to see the elephants, giraffes and to ride the train. We LOVE to go to the zoo and I love that we have a zoo pass and are able to just stop by for an hour and see a couple of things, ride the train and not feel bad about only being there for a short time. We then ran over to Children's and picked up her med. Then we went to the Mayfair Collection. They have a Carter's store. I was looking for a jean jacket for Jillian. We bought her a peach jean jacket on clearance a few weekends ago and she is in love with it. She LOVES jackets right now (almost as much as shoes) Carters had the same jacket in blue on clearance and the kenosha store was out of it. The one there had it in an 18mo so I picked it up however it is still way too big for her right now. Then we went to Mayfair and met Dan and Brent to make Build-a-Bears for Tubie Friends. Then we went to dinner at PF Changs (my meal sucked... don't get their Pad Thai!) Then we went home :)

Thursday night we had dinner with Bren't parents in Lake Geneva and then came home and watched the Packers kick butt!

We also got a call back from the nurse in charge of the aero digestive clinic on Wednesday. She gave us results back from her surgery:

ENT: There is no clef, just that weird thing where there does not look like there is muscle but there is. She said to follow up as needed.

Pulmonology: Her lungs have bacteria and such in her lungs that show that she is aspirating regularly on her own secretions (this is the same as her last bronch last Christmas) They said to stay on our normal follow-up schedule with them.

GI: THEY WANTED TO SEND US BACK TO FEEDING CLINIC. I will fully admit that there was NO nice word in my head when she said that. I then questioned this and kinda said no. Why would we go back to feeding clinic? She is not medically cleared to eat. You just told me that her lungs show chronic aspiration! The nurse said that she would talk to the speech path that works in feeding clinic and get back to me. She called back a little while later to say that the speech path said she does not belong in feeding clinic (THANK YOU!) She said the speech path said to send us back to Dr. Kahn (THANK YOU!) So the moral is, after me throwing a fit, we are going back to the GI dr that I like! Yeah! Sad news... we could not get back in until November.

Jillian's new pump is runs fast. She spent most of Thursday miserable. Her first pump ran fast and we could only get her as high as 58, her second pump ran slow and we got her up to 61. Her new pump is running about 7% faster then it should. We have bumped her back down to 58 and she is spending less time in pain. We are working with her dietitian to work on getting her to grow (her pants from last year are falling off of her)

So this is a catch up on this week :) the best part... Lots of cuddles from my little girl! I love jilli cuddles!!!!!!

Jilli and I at the reception

Jilli dancing with Jess

double nebs!

Jilli and daddy sitting at the top of the stairs

Jilli cuddles

Jilli taking her meds

On the train

She had such a big grin!

Waving with two hands

Jilli stuffing a bear at Build-A-Bear

Jilli took a picture of grandpa during dinner

I also have TONS of these photos on my phone

Jilli watching the Packers

This is a picture from her surgery. This is her throat. This picture is sideways. It shows the funny part if you know what you are looking at... if not... her is a picture of how just above the vocal box should not quite look