A Learning Experiance

GJ Tube and Medicine

Please forgive me if this is long....We had a rough couple of days. It all started on Thursday. I was very excited to be having a nurse come out on Thursday night and was going to run errands in town. I stopped at Walgreens to pick up Kylee's medicine and was told I had to pay $40 for each one of her seizure meds. The first lady told me because we didn't get a pre-auth on them and the other one told me because Kylee's state insurance (she has state insurance as secondary because she is disabled) doesn't cover brand name medicine. Our new neurologist (speaking of neurologist our old one sent us a letter saying he is taking a year off to further his education in pediatric neurology...to bad he used my daughter as a genie pig...no hard feelings) only deals with name brand medicine and there is a huge story behind that. Well I was very upset about that as it will cost us $120 a month for just her seizure meds. Then later that night Kylee's GJ tube came out. That was no big deal. I put in a new G tube and was going to make an appointment in the morning to get a new GJ tube put in. Then I got thinking and because she can not be fed into her stomach she would not be able to eat or take medicine until we were able to get the new GJ tube in. I thought I better call the Thedacare nurse on call to make sure that would be all right. I called and she said that she needed to be taken into the ER to have a new one put in or an IV started because she couldn't go that long with out eating. So this was around 9:30 at night. Jason was working and I had to call my sister to come stay with the boys...Well my sister stayed with the boys and my niece Danelle rode with me to the ER because we had to go to Neenah (about 45 minutes from where we live) because that is were our Dr had sent standing orders to have the GJ tube placed or so I thought. We get to the ER the Dr tells me there is nothing they can do for us. No one was there to place to tube and they did not have standing orders. That we were to go home and call our Dr in the morning. I was MAD. First off this Dr knows nothing about my daughter. He asked me what her diagnosis was and said well can you give me one I know (he didn't know non compaction cardiomyopathy, 1P36, dysautonomia but he knew c-diff). She doesn't show "normal" signs of dehydration because of the dysautonomia. He did nothing but look at her. Well I took her home called our pediatrician in the morning which is a issue in itself. I was told 2 months ago that orders were sent to Thedaclark. They asked what size tube she had and I was told they would always have one on hand for her. What a crock that was. No orders and no tube. Our pediatrician called our GI Dr who is in Milwaukee and we got a phone call at9:20 in the morning saying we had to be to Milwaukee at 11:30 to get the tube placed and that was the only opening they had. We live 2 hours from Milwaukee. Needless to say I put a t-shirt on and some jeans and we all piled in the car, drove way to fast to get to Milwaukee only to find out they were running almost an hour behind. When Kylee finally got in the nurse told be it would take 15 minutes to place it and it only took about 5 minutes. So we spent 4 hours on the road for a 5 minute procedure. At least it is placed and I learned alot from it. I am having the Dr send orders over so I can get a GJ tube to keep at home so that the hospital can't say they don't have one for her. I had a long talk with our special needs coordinator at Children's and I decided to skip Thedacare when it comes to important questions about Kylee and I will call the nurse or Dr on call at Children's for the special needs clinic. I found out that the state does cover name brand medicine but that the pharmacy has to take a few extra steps and our coordinator is going to call them about that. I am so happy to be part of the special needs clinic. I would be lost without them. They help me figure things out when I can't do it on my own. So with all that being said it was a rough couple of days and am happy the weekend is here. Hope everyone enjoys the long weekend.