And then the bad....

Play song, "Fix You" with this post as well

Sometimes life just sucks... plain sucks. And sometimes, I just need to know it's ok to say that.

Things are not good with our sweet little Emarie right now. Actually, she's the sickest she's ever been. Sometimes it's even seemed like we're pulling scenes out of a gruesome horror movie. And I was wondering if some of it was even real. Granted, Steve and I did not get much sleep in a 48 hour period, so a lot of it was walking around in a daze.

I guess it all started Tuesday night with a little vomiting during her bedtime nebulizer treatment. Not entirely uncommon, but not desired. She went to bed and threw up several more times during the night. At this point, we still were not alarmed, because like I said, pretty typical of Em. But still enough to warrant a sick day. So, Steve took the first shift in the morning, and I went to work for awhile, then went and picked up some prescriptions that her ENT had called in (Robinol, because apparently the insurance will not pay for the botox injections), and went home so Steve could go to work. We tried what had worked the last time this happened, and that was to do a bowel cleanse of sorts. But, it did not stop the vomiting. And by 2 pm, that's when it got really bad. I was pretty sure she was throwing up blood, so I figured I better take her in to be seen. 

machine used to suction her when she vomited, yes that's what it
looked like

Emarie's pediatrician Dr. Bailey is one of the most fantastic people, I know I've gushed about him before, but I am just so glad he is our sweet girl's doctor. He was concerned, but didn't want to send her to the hospital in case there were any chance her surgery could still happen. So he just sent us for labs, and we took her home. But, that's when things got worse...

clothes she was wearing

                                                  way worse....

I've never seen anything like it before in real life. She was throwing up almost on the dot every 5 minutes, and it was a thick browny-bloody substance (sorry to gross you out). I wanted to call an ambulance, but Steve thought we'd be ok to drive her to Utah Valley which is only 5 minutes from our house. I had scary flashbacks the whole way there of when I took Steve for an anaphylactic reaction, and the trip took forever. More flashbacks when we got there and while taking her stats alarms were going off everywhere, and they took us straight back. 

Things did not look up at all while we were there. They took x-rays of her abdomen to check for obstructions, but none showed up. She was still not letting up on the vomiting, despite the several doses of zofran and another stronger drug that they were hesitant to give her at first (because it's made for adults), but ending up having to when they had no other choice. They had already made the decision at this point to do a transfer to Primary, regardless, the medication did not work. And I had to put my baby into an ambulance for the second time in her life. And the second time was so much harder than the first, I fell apart when I kissed her and said, "I love you" and could barely choke out the rest, "we'll be right behind you"

I sobbed for several minutes in the car, until I saw her

You can barely make her out in the picture (even though we could see her clear as day), but she's in the left window there. By the way, this was the longest trip I've ever taken to Primary too (felt that way)

She was a sight for sore eyes upon arrival. She had obviously vomited several times on the ride because her face was covered in blood. I can only imagine what people were thinking as we walked through the ER to head up to the medical unit, visions of horrific accidents, because yeah, she looked that bad.

As you can see, things have not gotten much better. Though she did finally stop vomiting around 6 am, we had even bigger problems with her breathing. Like not being able to move air through her airway at all when sleeping, which she's been sleeping all day.

Things looked a little brighter later when she finally came to

 Probably the best taste she's had in her mouth in the last 2 days, that pink oral cleansing sponge that she's so fond of. Really, chows down on it like it's candy

But now we're here in the PICU looking at possibly putting her on c-pap or by-pap breathing machine

So, just let me say that life sucks right now! I hate seeing my girl suffer more than anything, and I just want a magic wand to make this all better. Oh, and her surgery will be rescheduled for the third time... you know, the one that will inevitably fix all of this. 

Frustrated, wish I could make my baby better and get some more sleep.

Truly yours