Thursday, July 27, 2017

So many hospital days!

 Having a medically challenged child,let alone three is very much like being on a rollercoaster.

 There are so many ups and downs

                Twists and turns.

Other times it feels like you are on a carousel or merry-go round and you are just going round and round and round,but not really going anywhere just doing the same thing over and over again.

Sometimes you just want to scream I want off,but you know that is not an option so you trudge on jump in the trenches and do your daily battle to keep your child as healthy as you can.

 Ariel's been up and down since she was nine years old and started losing things cognitively.Since then between her and her two brothers with this same unknown syndrome our lives have felt a lot like being on amusement park rides,without the amusement of course.

We had a relatively good year last year and then the proverbial rug got pulled out from under us.When this whole gallbladder issue hit on May 17th two days after her 23rd birthday.I'm very thankful she had a wonderful birthday before all this hit.I already did a whole post about our nine day hospital stay here:

When we left the hospital we did so without Ariel having the NG tube,much to my regret.Things were good for a few days,but then the same pain after she ate came back and my mistake was not asking them what do we do if things go south.

So for an entire month we were in and out of the E.R. ,urgent care and doctors offices.It was all so frustrating no one could tell us where the pain was coming from and then the bleeding started.Those two things ended up with her being in the hospital for another 11 days.

               So many pokes poor girl.

 She was in so much pain poor baby.

 Finally in a room after being in the E.R. for twenty four hours.

Sigmoidoscopy revealed Colitis so she was put on antibiotocs for that.
The nurse that tried to put in Ariel's PICC line couldn't do it so put in a Midline that infiltrated twenty min after she put it in.I'm sorry but she did a terrible job after three failed PICC attemps she did the Midline that failed and then tried five times to get an I.V. I told her to leave when I saw she was going to keep trying.The other nurse got an I.V. in the first try.
My view while waiting for Interventional Radiology to put in Ariel's PICC line.She still couldn't eat without pain at this point.

                TPN and lipids


                        Ariel's line

After several days of giving her gut a rest and getting TPN she was feeling so much better.

We always decorate our hospital room.It's nice to feel homey and all the nurses always want to hang out in there.

Going home day feeling so good ate a few bites of pancake.We went home celebrated the Fourth and then things went downhill.

Back in the E.R. for pain and bleeding we ended up going to the E.R. like eight times and  Urgent care several times and to the regular doctor.

     It was all so frustrating going to people who are supposed to help you and being blown off knowing things are not right.Finally it was decided to give her a G/J tube due to her Gastroparesis and pain after eating.She did a gastric emptying study and it was normal.I have a hard time believing that,but it seems like every time they have her eating just the eggs it's normal when it's oatmeal it's always slow.

It could also be that the Gastroparesis isn't the problem she's never been the same since gallbladder surgery.Has had pain continually especially when eating.We were really hoping her tummy issues,which we mainly dealt with at home would be better after her gallbladder was removed.Unfortunately that hasn't been the case.
Getting ready for surgery at Overlake Hospital.

        Getting wheeled off to surgery.

              It was very pretty here.

        After surgery and in recovery.

This was when they informed us her counts dropped seven points and were wondering why no one really addressed the bleeding issue.I was like" beats me? " 
They then informed me she would be having a Colonoscopy as soon as she had a good clean out. I was so thankful someone was finally trying to get to the bottom of things.

                Draining the bile.

 She had low counts and low potassium,magnesium and a few other things so she got bags of those.

 She was so pale and looked and felt so bad poor girl.

Finally home getting feeds. We have to give her a very small amount on a low setting that goes directly into her intestines and bypasses the stomach,because she just can't handle more than that.We are also doing fluids through the line.We saw the doctor on Tuesday and were there for three hours,because she was still having tachycardia episodes and they are monitoring her counts regularly.

We are going in again today.I'm a little concerned about some drainage around the tube site.Hopefully all will be well and Ariel just keeps mending.Thank you for the continued prayers.If you could be so kind she loves when people put animal pictures on Ariel's Ark it could be of your pet or just a stock photo she loves them all.

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