Thursday, June 8, 2017

Why do they never listen?


Hello friends,I tell you this month has been a toughie.Well the last fourteen going on fifteen years have been difficult if I'm really being honest.Some years tougher than others. This stuff with Ariel has gone on for ages.Her tummy problems started around the age of nine along with a lot of other issues. We know she is lactose intolerant and that she gets bacterial overgrowth frequently requiring antibiotics.Last I heard her gallbladder was sludgy and her motility was slow.In 2013 she couldn't eat at all without throwing up.That caused us to go to four different hospitals,because some the care was so inadequate it was ridiculous.For example one hospital where she coughed up an enormous amount of blood the doctor says "Oh she just bit her tongue from a seizure." She had not even had a seizure and it turned out she had an esophageal tear and the next day we were told to give her ginger ale and hospitals aren't for sick people. Really?  I don't often visit hospitals just for the fun of it.She still couldn't eat at all at this point.She eventually was diagnosed with Gastroparesis  got TPN feeds through a picc line and then an NG tube and a G/J tube. Thankfully she is able to eat again and no longer needs those devices.
For the last year I have frequently written her G.I. telling him of her chronic stomach pains.He's done some tests here and there ,but just sort of didn't really know what to do for her.Since she was nine the standard response has been give her Miralax.We once waited six months for an appointment at U.W. for us to see the G.I. specialist and waited all that time for him to say she has Gastroparesis and give her Miralax.I was furious.We already knew about the first diagnosis and  she has been on Miralax since she was nine.It was like thanks for nothing.On May 17th two days after her birthday she woke up at 5:30 am rocking and screaming with abdominal pain.We took her to the E.R. where they ran some tests and said everything lab wise was good and did an Ultrasound and CT scan.I thought surely there must be something.I even asked the doctor if it was her gallbladder and he said no the labs were not indicative of it being that.So we went home and her pain continued to get worse.I even had her eating just bland things,but every time she ate especially meat even chicken breast she was doubled over screaming.Finally I had,had enough and took her in again.This time they did the Ultrasound of her gallbladder and her Lipase was up to over a thousand.The Ultrasound showed many stones.So once again I'm like why wasn't this picked up before it became so severe?


She was admitted and not allowed to eat anything by mouth,since she had Pancreatitis.Once the pancreas calmed down then they could remove the gallbladder.


The flowers and teddy her brother Nick got he.He's serving in South Korea.


        I.V. fluids only nothing by mouth.


Just hanging out waiting for surgery day.


 Surgery day.Waiting in pre-op.


 Getting all ready for the procedure.


After the procedure.She was crying and moaning when they brought her up and it was four hours later.This was just laproscopic.I did think it was sweet that the docs dressed her puppy up for her,since he had to have surgery too.


Still in a lot of pain. They finally had to give her a pain pump,because she was screaming worse than when she had the attacks.


    Grandma came to visit.She is here from Arizona. 


          Finally some much needed rest.


  Ariel loved this dragonfly cookie.


A couple of days later she started spiking a fever,got chills and was throwing up.With three large comforters two of them being down throws she still couldn't get warm.This caused them to do the blood cultures.One grew out strep,so we had to stay an additional two days for I.V. antibiotics.


 Her infiltrated hand.Unfortunately her I.V.'s did this a lot.


When they told me they were doing a Central line I had no idea it was to be in her neck a truly horrible experience,especially since he sutured it without seeing if it was placed right and then found out it was 4 cm too long so sutures removed and she had to get restitched.Poor girl.

                  
Waiting for Hida scan.They thought maybe she had a biliary leak.



Ariel's Internal Medicine doctor. Dr.Oh we just loved her she was so sweet and kind.

             The Central line.



              St.Anthony's Hospital.



       Ariel's brothers came up for a visit.





Ariel's room.We colored well mostly I colored tons of pictures and put them on her walls.This was not our first rodeo and we try to make hospital rooms look as homey as possible.All the nurses wanted to hang out in there.

     
                                                                     Memorial day flowers.


  Finally going home after 9 days being inpatient.


 Ariel's first day out since being home.We went to the movies and Petco and she was feeling really pretty good,but unfortunately has hit a rough patch and so we are watching and waiting.Hopefully she will be feeling much improved soon.
                                                    
                   After all she is 


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