Or the lost month part 3,but now I think it's going on the lost month and a half.We were finally getting settled into our routine.When we went to see Ariel's Internal medicine doctor he felt that an NJ should only be temporary and was talking about her getting a J-tube for feeds.Saying it would be more comfortable and it could have duel purposes one for feeds and another for meds,especially when she is in a bad seizure state.Well we got the approval right away and they called on Monday and were like we can do this tomorrow.Yikes!
So we got everything all ready and checked in at St.Joes.This is the fourth hospital we've been to in a month.We did the usual labs and registration and then went into the waiting area waiting for them to bring her back.
This is one of the problems I have with adult hospitals,they always try to separate me from her.When I came in I told them of her impairment and that wasn't going to happen.They finally took her back to the final holding room and the doctor comes in and proceeds to tell me they were going to do this under conscious sedation.Even the name sounds like an oxymoron.Umm no you are not you're putting her out or this isn't happening.
Thankfully the doctor was nice and said he would just have to call for the Anesthesiologist.
They finally came and took her to surgery.She was in surgery for an hour and recovery for another hour and a half.When we went upstairs to her room I immediately noticed it did not have a bathroom or shower and that you had to go down the hall to the community bathroom.So nice for someone with their stomach cut.
When Ariel came out she was moaning loudly and coughing a lot.I really had no idea the extensiveness of the G/J tube.I am used to friends with kids with Mickey buttons and how they've told me it was a piece of cake.This was anything but.
Poor Ariel had been in so much pain and hurting so badly.At first the doctor came in and was really nice and they will do anything she needs to make her comfortable and everything.The next day her attitude changed.She was acting like this procedure was nothing more than having an Endoscopy with a biopsy.The Interventional Radioliologist told me this was like having a bullet go through your intestines and stomach.
I told her my daughter was no way going home until her pain was better controlled.She was like "I'm not going to fight you on that."And proceeded to tell me how this is usually an outpatient surgery.Well for one Ariel is not the typical patient.And two on their board it says above all the faces of pain, control is our top priority.Oh,really?
By the evening I was one hot mama as my daughter is screaming in pain and basically being blown off.She had already started decreasing her pain meds.For goodness sakes she just had surgery.I get so tired of this everyone is going to be an addict mentality that they make people needlessly suffer.Especially a mentally impaired girl.At that point I had ,had it and started making phone calls and emails.I told them "If my daughter goes into crisis because of this you will be sorry." Sure enough by morning she started having convulsive seizures like crazy.
They had to bring in the oxygen and suction equipment and I.V. ativan.I told them "See I told you this would happen if you didn't get her pain under control.Now do you believe me?"
They were all scrambling paging the doctor over and over she wouldn't respond.Finally like an hour later she comes up Ariel had been off and on clustering the whole time.When she saw her actively seizing she was like "Does she need something more for pain?" Then was all being miss sweetie pie and rubbing Ariel's leg and going on and on about how beautiful she is.
I told her we wanted out of there we wanted to go home,but want her pain controlled so she can be comfortable at home.Finally she gave us enough things to give her some pain control.We got home at 8:00pm that night.Since being home she is still having pain,but it is a bit more controlled.The main thing is trying to keep her down.She wants to walk around a lot,but that brings pain and that brings seizures,so it's quite a balancing act.
We have an appointment on Monday with the Internal medicine doctor.So far using the tube is easy she is getting her meds and feeds as needed.It's clogged a couple of times,but the nurses have shown me how to use Sprite to unclog it.
Please continue to pray for Ariel.This has been six weeks of sheer mysery and I'm so tired of seeing her suffer and in pain and miserable.
I just want her better and to be able to do the things she was doing before.Thank you for your prayers.