Hello friends,I'm just putting a recap here of the past year.
All this mess started shortly after Ariel's 23rd birthday.Before that it wasn't that she was the picture of health or anything,but we were managing a lot of things at home.
Ariel had a wonderful birthday with lot of fun ,friends and laughter.
It was just a few days after her birthday that she woke up at 3 am screaming in pain.She was having stabbing pain in her upper right side and since I had a bad gallbladder that was taken out I figured that's what it was,so I took her to the Emergency Room.
They seemed to keep focusing on her kidneys,since she's had kidney stones in the past.I kept telling them are you sure it's not her gallbladder? They kept saying "No,No nothing indicates that."
They even did an ultrasound on her kidneys,but not her gallbladder.So we went home and guess what her symptoms kept getting worse despite the fact we were watching her diet very carefully.After a week of this nonsense I took her back in.She couldn't even eat Jello without screaming in pain.
Thankfully we got a really nice doctor that knows us and took our concerns seriously.I told her I thought it may have something to do with her gallbladder and she looked into it and said they never checked for that,so did blood work and an ultrasound .Turned out that she not only had a gallbladder full of stones,but also had full blown pancreatitis.Maybe if I would have been listened to the week before she wouldn't have gotten that.Unfortunately for us there were no beds in the hospital so we had to spend the night in the E.R.
Thankfully the next morning we got a room.Ariel was not allowed to eat anything by mouth at all not even a sip of water until her numbers were better.Poor girl was hurting so badly.We started trying to make her cozy.Once her numbers got better she would have surgery.
Finally after two days her numbers went down and she was able to have the surgery.
When she hadn't returned from surgery I was getting quite concerned,because it was a laproscopic surgery.When she finally did return several hours later she was screaming and crying in pain.I was not too happy with recovery for not getting her pain under control.If her pain is uncontrolled she will have seizures.
I finally convinced them to give her a pain pump.Ariel has fibromyalgia and with that comes severe pain especially after any kind of surgery.I figured after the surgery she would recover for a day or so and be able to go home.No such luck.Not only did we have an extremely hard time getting her pain under control she also was not able to eat at all.So we were there day after day with no end in sight.The only nice thing is this particular hospital is 12 minutes from our house and a very pretty one.Ariel had an enormous room with a beautiful view.
As time went on they had a hard time figuring out why her pain was still so bad.
They even sent her down for scans to make sure nothing was leaking.It wasn't ,but she just wasn't getting better.So we just stayed there and then her I.V.'s blew for the last time causing her to have to get a central line.Why they put it in her neck is beyond me it was so traumatic for her.
One of Ariel's wonderful doctors.We just loved her.I wish she could be Ariel's G.I. all the time.
We were thankful for the friends and family that visited and to our church family who brought meals to my family every day.
After many more days Ariel was finally looking better and feeling better.We were finally able to leave after 9 long days inpatient.
She had several good days after we left the hospital unfortunately those days didn't last long.Soon she was back to having pain again all the time and not able to eat.We ended up taking several trips to the E.R.,
then she started having this really bad issue of bleeding in a place you shouldn't be bleeding from.
She ended up admitted once again and they were going to do an endoscopy the very next morning.
She was so miserable after doing the endoscopy they discovered she had colitis and put her on antibiotics for that.
She again had issues with I.V.'s blowing so it was decided to once again give her a mid line or central line.Unfortunately we had a nurse who couldn't do it and instead of admitting she needed someone else she just poked her relentlessly. Three tries for a picc line then did a mid line that infiltrated in twenty min causing Ariel to have to get shots to counteract the ppn,then she tried to get an I.V. I finally told her to get out.Poor Ariel was so sore and black and blue.
Now we will only let Interventional Radiology do them.
Once again Ariel could not eat this time she ended up inpatient for 11 days.
We were big time pushing the fluids trying to get her to drink and eat anything at all.She would maybe take a sip or a bite of Jello and then get sick.She was diagnosed with Gastroparesis in 2013 and after a year of feeding tubes and picc lines she seemed to go into a remission sadly the surgery seemed to flare it back to life.
Finally after 11 days she started being able to eat and drink.They wanted to give her an NG tube,but I kept thinking she was on the mend and didn't need it.She had a good couple of days home,but once again started having problems right away.She was back to not eating and the bleeding had started again.
A couple of Ariel's favorite places the movie theater and pet store.
We ended up making several more trips to the E.R. and were just being blown off.I kept asking "Why is she still bleeding a lot? Why can't she eat?" I was told even though she was bleeding a lot it was all stable so no biggie even though she was bleeding from a place you shouldn't be bleeding from.Then she developed a new symptom.Her hair started falling out and turning white.Her hair had always been super thick.
I had wanted to have her get an NG tube her G.I.wanted her to have a G.J. tube and that started a whole other mess.She went in for surgery for this in July at that time it was then discovered that her blood count had dropped 7 points in two days and she just looked awful and had zero energy.She couldn't even keep her eyes open for hardly any length of time.The people at this hospital couldn't believe every E.R. we went to were blowing off the bleeding.Once again she had an Endoscopy/Colonoscopy and they finally discovered the cause of her bleeding.
After 3 days inpatient we were finally able to go home.Things started slowly returning to normal and we actually were able to do a few fun things like going to different fairs around the area.Ariel loves looking at the animals.
In September we went to her Neurologist and discovered that her Vagus Nerve Stimulator that helps control her seizures' battery was close to dying.She's had it for 6yrs it was a newer version,but because she was on rapid pulse meaning it was going off every couple of minutes the battery died sooner.So she had to have surgery replacing that.We tried to make it a girls thing and I got a hotel room and we went out to dinner.Unfortunately at The Spaghetti Factory she started having bad seizures so we had to get our food to go.
Thankfully that surgery was outpatient.We were able to go home that afternoon and she healed from it pretty quickly.Shortly after life pretty much returned to as normal as it could be.We still had to do feeds and she still went to the doctors a lot for various shots and vitamins and she also had anemia that she was getting treated for.In September her G/J tube all the sudden came out,so she had to have surgery to replace it.This happened repeatedly.One of the times we were at a doctors office she lifted her shirt and the tube just came out.
It was decided that they would do a larger surgery separating the G and J tubes.There was a lot more to this than I realized including giving her a huge incision that went from diaphragm to her belly button.Her pain was really bad. Everything was much worse than it was supposed to be.
After surgery we had the usual difficulty in controlling her pain,but it seemed a bit better than before.I was none too happy with the accommodations.First they tried to give us a shared room,which I told them was out of the question and then gave us this little tiny room resembling a shoe box on the dementia ward.So that was loads of fun listening to screaming all day.Some of the way they treated these elderly patients had my blood boiling.There was a man strapped to a wheelchair crying and moaning outside our door and they just kept telling him to be quiet.
After about a week here Ariel started developing a fever and looked very much like she did when she had sepsis in the past.They did a CT scan and discovered she had fluid behind the incision.The doctor just prepped and opened her up in the room not a sterile surgical room.There were many occasions the nurses would mess with her tubes and lines with no gloves on their hands.I would be sleeping and wake up and demand they put gloves on.She did indeed have sepsis Ecoli in fact.
She also ended up with two deep vein blood clots.I believe due to an infiltrated mid line.I called them on 4 separate occasions to look at it and possibly change it out they just kept poo pooing me and blowing me off.Finally after almost a month in this miserable place that we will never step foot in again we were discharged two days before Thanksgiving.Ariel had antibiotics to come home with and now had to be on blood thinners for the next 3 months.That included getting many injections in her stomach, daily blood draws and a bunch of other nonsense.
It was so wonderful to be home she and I were both going stir crazy and were just sick of that particular hospital.Since being home she's been to the E.R. a couple of times mainly for infections and to the doctors quite a lot and was getting draws daily,but we are managing at home and hopefully she will not be admitted again for a very long time.
We had a wonderful Thanksgiving it was so nice to be a whole family again.
