Tuesday, September 23, 2014

Riley Trip

On Tuesday, September 9th, we went to Riley.  We had a huge trip planned and things didn’t start off well from the beginning.  Macie started throwing up at school the day before.  She was really sick and ended up getting sick all day long until I could get some medicine called in for her.  The girls stayed the night at my parents’ house so we could leave early for our trip.  I stayed until they were pretty much asleep and then headed home to do the same.  We were up at 3:00am and on the road by 4:00.  We stopped at Hardees for breakfast and a potty break, but other than that had a smooth trip.

#1 Dr. Haggstrom: The first stop was to see Dr. Haggstrom.  We’d never seen her at the Springmill location before, but it was close to IU North.  We got there and didn’t have to wait long to see her.  We discussed the increased pain and bleeding.  She knew we had other appointments ahead, so she just gave her suggestions and said she would talk to the other docs.  She wanted labs and more testing to see if the cause of the gi bleeding could be determined.  She also said she is limited on some pain meds because of the bleeding concerns.  She set up an appointment for 6 months, but said that would all depend on what happened with the other doctors.  Gavin got a few stickers for being a good patient as always.

#2 Specialty Health: We ran to Riley really quickly to apply for special health insurance for Gavin.  We are in the process of applying for Medicaid and this insurance to help with the cost of everything.  Unfortunately, we probably won’t qualify, but we can try anyway!  This took no time at all since we had already sent them most of the stuff.

#3 Lunch with Vaughts: Next up, we went to Circle Center Mall.  We walked around a bit and bought Gavin a toy.  Then we met the Vaughts at Champs  It was delicious and we had great company!  They even surprised Gavin with a Color Wonder set.

#4 Dr. Contreras: This appointment was a bit of a disaster.  Gavin had to poop while we were waiting in the room.  Brian took him and asked if he could get something to collect the poop.  He collected it and it was, of course, a rare time where there was no blood.  We were frustrated.  They went ahead and ran some tests on it.  During the exam, she kept saying his stool was too hard and we kept saying that it just rushes out with no control due to so much blood and mucus.  Brian and I were super aggravated.  She ordered blood work and said that she wanted to know what Dr. Marshalleck suggested.  She ordered the blood work for that day, so we had to try to fit it in.  Gavin left with more stickers!

#5 Dr. Marshalleck: We headed straight to see Dr. Marshalleck.  They did an ultrasound and confirmed that the areas around the coils had closed off, but that the other areas remained open.  The worst part was that they are starting to branch off and create new pathways.  UGHH!!  He suggested going forth with the colonoscopy, finishing the leg off with the vein embolization, and ordered a ct with contrast of the gi and pelvis to see if the source of the GI bleeds could be determined.  He agreed to coordinate with other doctors and attempt to do all procedures on the same day.  The issue was that we might have to be in different ORs all over the hospital and that freaked me out.  Brian left with Gavin to go get the blood work while I stayed with his rock star nurse, Donna, to see what we could schedule.  Donna begged and they agreed to do the ct with contrast right then since we were sure he wouldn’t need to be alseep for it and could handle laying still.  I thanked Donna and went to meet Brian and Gavin.

#6 CT Scan from H-E-Double Hockey Sticks: I ended up meeting Brian and Gavin in the hall.  Gavin was all smiles because they gave him a slinky and he hadn’t had blood drawn yet.  They just gave Brian a vile to collect it in when they did the IV for the scan.  We headed to the waiting area for the CT scan. Since Gavin already had a bracelet, they gave Froggy one.   We weren’t there any time at all when Gavin started pooping his pants.  Brian took him into the bathroom and helped him clean up and took his underwear straight up to Dr. Contreras’ office so she could see what we are always talking about. 

Then, they called us back for the scan.  Brian was able to be in the room with him when he got his iv and for the scan.  I stayed right outside because it is not my strong suit.  Gavin was brave, but nothing seemed to go right.  Basically, there were many attempts and 4 different spots they tried to get the iv in.  They used an ultrasound machine and everything.  I was sitting outside of the room listening to him cry and scream in pain.  It was terrible.  My friend, Tina, ended up meeting me and sitting with me so I didn’t have to be alone.  That was a huge blessing.  They never were able to get any of the scans done.  We finally just gave up.  I felt so bad and like the worst mother ever.  I wasn’t able to help in any way.  I just held him.  He recovered pretty quickly though and was happy to get two cars as a prize.  The main guy, Erv, felt so terrible and said he was so stressed, he needed to go home and get a drink!  He gave us his personal card and said that when we wanted to reschedule, let him know and he would work around us.  He also assured me that he would have the best team there to make sure it happened.

#7 Home Sweet Home: We stopped by the gift shop on the way out and let Gavin pick out some candy.  It was the least we could do after all of that.  Then we said good bye to the Vaughts and drove home.  We stopped at Chic-Fil-A on the way home and then picked up the girls.  We felt depressed and defeated.  We went to bed pretty much after being home.

1 comment:

Krystyn @ Really, Are You Serious? said...

Oh my goodness. I can't even imagine all of this in a week or a month, let alone a day. Poor Gavin and poor mom and dad. It's so stressful when your kids have something wrong and you are trying desperately to help and keep hitting roadblocks.