Saturday, March 9, 2013
The lost month part 2
As I said in my previous post we had a fun time at Petco and Walmart shopping and it was just fun to have a day out to do something fun,so the day was going well and I was just so happy to be home,unfortunately that was short lived.In my slumber I heard voices coming from the front room.It was 4:30 in the morning.Ariel was on the couch shaking like a leaf and she felt really hot to the touch.Her heart also looked like it was beating out of her chest.I was wondering where I should take her and she was terrified and was afraid for herself and finally asked us to call an ambulance.I'm so glad we did.
When they got here they had a hard time getting a heart rate.because it was so high.She had a 103 temperature and with her having a PICC line I knew that must not be good.We live 12 minutes from this particular hospital,but normally can't stay there,because of insurance issues.We had one of our favorite E.R. doctors.He did blood and the guy came to do a temp.He used one of those head ones that you roll across.He just swiped it really fast and her temp read 99.The nurse I had the day before had a discussion with me on those and the ear thermometers.She said people get lazy and don't keep the head ones there long enough and you are supposed to roll the from forehead to ear and back again.I made them do an oral one 102.8.After that I told them they will only use orals on Ariel.Can you imagine if they would have took that 99 as her temp.They could have blown off any infection.
They started giving her I.V. fluids and the doctor came back and told me her white count was pretty elevated and something else I can't remember was elevated a sure sign of Sepsis.He told me they would be admitting her.The also did blood cultures.Poor Ariel she was not only incredibly sick ,but so upset to be back in the hospital again.They started giving her I.V. antibiotics,three different ones.She didn't look very well.We were also still having the problem with her vomiting and being incredibly nauseous.
The entire almost two weeks we were in this hospital they were constantly going back and forth on whether she was in sepsis or there was contamination.I kept telling them I know she didn't have a 103 fever for nothing.Also the shakes she was having were really bad.My heart was just breaking for my girl not to mention Sepsis is life threatening.It was so scary wondering what in the world was going on,not to mention the constantly changing doctors made me crazy.The first doctor I could barely understand a word he said,but he seemed nice,didn't bug me and did whatever I asked.The next doctor was pretty nice as well and seemed to go the extra distance in answering any questions I had.The third I didn't care for as much.He seemed to have a very Jekyl and Hyde personality.One day he would be sweet as pie and the next day he would be nasty as could be.He and I went the rounds a few times.One day they were pulling her antibiotics and the next they were adding them.
I spent several days coloring pictures and cutting out construction paper hearts to decorate her walls.This is something I always do when Ariel is admitted.It's hard being a mentally impaired child and having to go to adult hospitals.This hospital was great in many ways,like being only 12 minutes from our house,nurses that actually let you sleep at night,plus a beautiful facility that looks more like a resort than a hospital,
but not so great in other ways,like being made to feel like you're a criminal just for going to the gift shop.That was one thing we ended up talking to the charge nurse,social worker and doctor about.There were all these rules and if you dared break one they would jump down your throat,but half the time they wouldn't tell you what they were.
For example at this hospital you are not allowed to leave the floor and can barely walk anywhere.At Overlake they made you walk and you could walk through the entire hospital and go outside.The security guard here made Ariel put down a panda bear she was hugging and escorted us to her room and was being ridiculous.Acting like she was going to go outside and shoot up or something.You would have thought we were getting busted for shoplifting and I was one hot mama.Ariel was in tears and crying.
I ended up buying her the Panda bear the next day,I felt so bad for her.
They also had a fit if I dared touch anything on her tray,even though several of the nurses asked me if I wanted anything before they got rid of it.I would order her an abundance of food and she would maybe eat a little bit of fruit.I always would tell the nurses exactly what she ate,but I got totally chewed out by the doctor for eating off her tray,well it's expensive being at the hospital and they would rather throw away a tray full of food,then to let me have it.I really think what happened was that certain nurses were lazy and wouldn't write it down,even though I told them exactly what was on there and then when the doctor asked they would blame me.
I also got chewed out because one night when I was sleeping Ariel threw up and flushed it,because they have to see it.I was also accused of dumping her urine they were collecting.I did dump it once,because it was overflowing, and the nurse was not doing her job and Ariel needed to use the restroom,but I did tell them exactly what it was up to.
I had finally had enough and at first my husband had a meeting with the charge nurse ,doctor and social worker and the following day I had a meeting with the charge nurse.At first when I went to the front desk to ask about seeing her the gal was like"What for,Why do you want to see her?" None of your business I thought. I ended up speaking with her she was really nice and said that certain nurses were not doing their jobs right and should not be blaming me for them.She also didn't understand what the big deal was with the tray.And that if they expect us to go by certain rules they need to tell us what those rules are.What am I going to lie about what she ate? Why would I, What purpose would it serve me? So after that things were much better.Most of the nurses were really nice,but there were a couple I didn't care for,mainly it was in the way they treated Ariel.The G.I. doctor came down several times.She told me "We believe she has Gastroparesis.Why she has this or what caused it we don't know."So the solution for us finally being able to get out of the hospital was to give Ariel an NJ tube.
I will tell you that was the most miserable torturous experience ever.The nurse we had that did it was not one of my favorites.She was very cold and unfriendly and she seemed really rough about it.She jammed it down at first and here they don't numb you or do anything like sedate you.We waited forever for x-rays to confirm it was in the right place.It wasn't it was looped up in her Esophagus.Then she said I need to pull it out and then push it down.Which she did.Ariel was so upset and crying.When it was done the guidewire came out on the bathroom floor and along with it was all this blood and snot.I freaked out and so did Ariel.I buzzed for this gal who was like it's no big deal.Then finally they did a second x-ray again it was in the wrong place.Later they had an ICU nurse come in.I was furious by this point at what they had put Ariel through.
The ICU nurse was very nice and she was none too happy either and said obviously that gal had forced it too hard to make her bleed like that.She tried to push the tube down further,but without the guide wire couldn't get it in her Duodenum.It just looped and looped.So she had to pull it completely out and do it again with another.Thankfully she was gentle and changed nostrils and got it down quickly.Poor Ariel was just a wreck at this point.But thankfully it was in and in the right place.One thing I didn't like though is these sticky pads they stick on the nose to keep the tube in place.It covers the whole nose and clips with the tube hanging in the front as pictured above.It's bad enough having an NJ tube,but do they have to make you look as freakish as possible? Thankfully my friend Wendy who's daughter used to have one told me to use Tagaderm instead and I did and Ariel looked so much better.
We started this whole thing at like 2 in the afternoon it was 3am before she actually got feeds.The x-ray technician was really kind.She knows us well from years of going to the E.R. with Daniel's dislocated shoulder.I told her some of what had gone on and she was disgusted.She told me "It's families like yours that are nice ones that we want here." It's so ridiculous they treat so many people there like they are druggies. In Gig Harbor,really? I seriously doubt there is much of a problem with that here.Ariel was so stressed from it all she started having seizures that night.Her convulsive seizures had been so much better since her VNS,but since she got sick she had,had several at Harrison and at St.Anthony's.Thankfully when she had them we had one of our favorite nurses.One that was kind and gentle,probably,because she also had a special needs daughter.
They started Ariel's feeds at 10ml,which she did okay with,but once they moved her to 20 she was puking and wretching.It took two days to get there.The doctor finally came in and said sure enough her PICC line had staph growing in it and so they were removing it.Then had to do another I.V. thankfully they got it in quickly.We ended up staying at this hospital for almost two weeks.The entire month of February was spent inpatient at one facility or another.
Ariel was finally able to get up to 30ml per hour before we left.
Another bright spot was that many of you were very kind and sent Ariel e-cards or visited with gifts or flowers.Our church family was such a blessing bringing meals to the boys and sending cards and visiting.Ariel's daddy and brothers were there almost daily.
Jaime from Quilts of hope sent Ariel this amazing quilt with encouraging words on it from friends.Just so you all know I don't go to these places looking to fight and argue with people.I wish I never had issues and things were smooth sailing the whole time,but I want my daughter to get the best care possible,and when they start treating her poorly I will not stand for it and make my voice heard.
We finally were able to come home with enough meds to fill a pharmacy and tons of equipment,but we were home and Ariel and I were so thrilled.Ariel was so happy to be home with her puppies again.
Wednesday we went to see her Internal medicine doctor.He felt so bad that she went into Sepsis,since he was the one that ordered the PICC line.He wants to do further testing for the Gastroparesis and gave me this large binder with all sorts of info.I guess Ariel's been put into a program for people that are frequent flyers and high risk for going back into the hospital.After the appointment I took her to the mall and she got to do a Build A Bear.I think she realized though how much the Sepsis and the Gastroparesis has taken a toll on her body.she was quite weak and very tired after walking.As of today she has lost almost 20lbs.
Thank you all again for your love and support.