Teryn's first haircut

Last night before I went to bed I called the nurse to check on Teryn. Someone from the IV team had come but was unable to find a good vein to start a new IV. They did the xray to see if the ND was possibly in correct placement and it was not. She was getting pedialyte through her ND (even though it was technically and NG since it is in her stomach). By 7:00 this morning she was having a hard time tolerating the pedialyte and was refluxing it. They had to stop that and call the IV team again.
Luckily it was our favorite person from the IV team. She has been very successful so far when others were not. Well, she was unsuccessful as well this time. At this point we were desperate and decided to go with the central line in her head. So, Teryn got her first haircut. (There was a very sad mommy that this is how it happened.) She had to have 2 half dollar sized areas shaved in order for the line placement to be sterile. Unfortunately, the central line placement was unsuccessful as well. The IV nurse was able to get a regular peripheral line but not a central line. (So her hair was shaved for nothing.) So, we are really praying that this will last through her procedure tomorrow.
Since her method of medication delivery has changed so much, she had to be given her anti-seizure meds through her ND tube today. About 20 minutes after that she bgan refluxing it. We do not know how much she was actually able to ingest. They are doing a level to see if there is enough in her system.
She has been having a rough day respiratory-wise. She gets this way when she has been overstressed. She has had several desats and is obviously still having trouble with the pedialyte and meds in her tummy.
She will be going into surgery tomorrow around 9:00. The plan is to do it endoscopically with a scope down her nose and into her stomach. Please, please, please pray that this method works. If it does not then they will have to make an incision and go in.
I am trying to be patient and understanding but today is one of those times that it is very difficult. I just don't understand why Teryn has to keep enduring all of this pain. My mom and I were talking on the phone this morning about how Teryn must think this is what life is like, people giving food then taking it away and sticking you with needles on a daily basis. I desperately long for the time when we can take her home and cover her with love and comfort away from all of the stresses of the hospital.