What a week. We went to Wichita for thanksgiving and had a nice time. We spent time with family, did some basic christmas shopping, family photos along with Eli's 2 year pictures, eli's 2nd birthday party, and Bob and I even snuck in a date night.
Here are a few pictures from our weekend.
Then we got back to KC and Eli decided to remind us in a BIG way that we were back to the real world. Sunday evening his blood sugar dropped and he was super fussy. He was being put to bed and his feeding tube got ripped out. I was able to get a G tube in and off to the hospital Eli and I went. They immediately got an IV going with fluids and sugar. The ER doc begged IR to come in so that Eli wouldn't have to be admitted during winter sick season. He came in and got the tube replaced. He ran the contrast dye in to check placement and accidentally ran it into the G tube side ( Eli's stomach.) Eli choked and gagged. The next morning Eli woke up with a fever, high heartrate, super fast respirations and a yucky sound in his lungs. We had an appt with GI so he ordered chest xrays. He also had us meet with the nutritionist as Eli is again losing weight. Right now they are more worried about his fluid needs than his calories. He's already getting twice the protein needs and 30% more calories. He's getting a ton of fluid but still showing "dry" on all of his labs, even though he is constantly swollen and puffy. The GI is also concerned about Eli's fundo and is ordering an EGD to be done in january. Then we went for chest xrays. They showed ok, although his pulmnologist says it sometimes takes time for aspiration to show up on film. By the afternoon when his pulm called Eli's heartrate was 170 plus, and his respirations were between 45 and 60. Doc said to put him on O2 and attempt to ride it out at home. Eli couldn't handle a lower level O2 so is on double his norm. Everytime we've tried to wean him off his HR and resps shoot back up. He's super tired and has been resting alot.
We are holding well at home currently but concerned about the fact that we can't seem to get back off the O2.
Eli also met with the dermatologist over a rash on his back and neck and a different type of rash on his head and ear. The doc talked about what they were and what to do about them. So now Eli has 2 new meds to help with all of that.
Here are a few pics of Eli these last few days.
The rest of us are ok. Exhausted. The kids are back into the full swing of school and life. Bob is keeping up well with them and the house. I'm staying busy keeping up with Eli and all of these things going on.
We are still awaiting Eli's care conference. They've decided to invite a larger group of his docs and this takes a longer period of time. We get more nervous by the day, especially watching Eli struggle.
Tomorrow is a HUGE day for our family. Eli will be 2. We are so blessed to be at this point and we cherish each and every day.
Here is a pic of my little man taken this weekend by an amazing photographer!