Ruminating

ruminating present participle of ru·mi·nate (Verb)
1. Think deeply about something: "we sat ruminating on the nature of existence".(of a ruminant)
2. Chew the cud.

This is not the next post I had planned. I had planned on posting a family picture and talking about what I was thankful for but that post will just have to wait. And I really wanted to be able to see my babie's smiling face staring back at me when I opened up this blog for at least a couple more days but these feelings have been ruminating for way to long and I must get purged of them now. I warn anyone who reads this, that it's a lot of rambling and it's very long! I guess that's what ruminating will do to you if you let it.

If I had a large following on this blog, I might be worried that the person I am about to anonymously talk about might read it but since only a few very loyal, sweet and dear individuals read it, I am not too worried and frankly I really don't care if they did read it at this point. I am being open, honest and sharing my feelings while advocating for my son. My hubby would say that I have high expectations of other people and he is right, maybe they are too high.

Let me start off with stating that I haven't had any difficulties with the Endocrinology practice we go to currently (we had left the original one when Our Sugar Babie was diagnosed because they provided us with no training upon leaving the hospital with a 14 month old - it was scheduled for a week later - but that's a post for another time) until I had to start seeing this particular nurse. We started off seeing a fellow in the practice and since it is a teaching hospital, I was fine with that for everyone has to learn somewhere and they were already a Pediatrician just not yet an Endocrinologist and we couldn't have been happier with the care we received from them. Once we started discussing pumps though, we were transferred to this particular nurse to start the process and it was set up where you meet with the nurse first and then they go talk with the Endocrinologist and they come back together at the end of your visit. I wasn't much of a fan of this since I would just rather talk with the doctor myself instead of relating everything to a nurse who then goes and repeats what you hope is a similar version of what you told them and then you get about 10 - 15 mins with the doctor but thought that I would just have to get use to it.

Our first meeting with said nurse didn't go so well since they never discussed pumping until I brought up that was the whole reason we were meeting with them and not the fellow! I told them we were interested in the OmniPod and they quickly started talking about how much better the other pump was; not other pumps but singular pump. They just happened to not have any information on the OmniPod to give us but loaded us down with information on the other pump and never once said anything positive like we were doing a good job caring for Our Sugar Babie, nothing positive at all. I left that visit not feeling too good about said nurse but thought I better give it another chance before making any final decisions since it wasn't like we were trying to be friends but they were just one of many medical professionals on Our Sugar Babie's treatment team.

On the following visit, I was optimistic and went in with a smile on my fact but it quickly got smacked off . They mentioned the fact that I stay at home with Our Sugar Babie and don't work...what does that have to do with my son's care...nothing as far as I am concerned. I never mentioned my education or work background because really it has nothing to do with my son's care. A comment had been made at our last visit with said nurse when we had made one of our appointments at one the satellite offices that only educated people like myself and my husband go to that office and that isn't the case at the other one. I was sensing some judgement being made here and I was very uncomfortable with how this nurse was viewing other people. On this visit, somehow school and diabetes got mentioned and I expressed my fears of managing diabetes in preschool etc. and that I have a niece and a nephew that are both home schooled and that might be our avenue of learning for Our Sugar Babie and they stated that my son needed to be away from me and at school. What the Hell...did you just tell me how to parent my child. I think your place is to support me in my son's medical care and leave that to his parents to decide. I also asked about trying Apidra at this visit and was told that they were currently using it and there was no difference between Humalog and Apidra...so no script given. I said nothing to all of this and I was beginning to see a pattern here but did nothing.

On our next visit, I brought up wanting information on CGM's and they quickly stated that it wasn't FDA approved for Our Sugar Babie's age and further more they were for lazy parents who wanted to sleep through the night....another What the Hell! I was horrified that someone in that position would say something that stupid and was just in so much shock that I didn't say something right there and then. At this visit, I inquired about Apidra again and their response was again that there is no difference between Humalog and Apridra so there was no need to try it. No discussion just "no". When the doctor came in to see us, I began discussing pumping and our decision to go with the OmniPod and said nurse asked if we needed any information on the OmniPod and proceeded to give us sample pods. I stated that I had already gotten insurance approval and all that was needed was the medical records and the script from the doctor and the doctor was all for it and the said nurse quickly chimed in that if I called OmniPod they would be able to have everything ready to go. I was thinking to myself, what just happened here? I quickly began thinking that my strategy should be to just ask for things in front of the doctor and just bypass this nurse all together.

That brings us to Our Sugar Babie's pump failure. I partly blame the lack of support I received from the nurses on this one among other factors. I called into the nurses shortly after Our Sugar Babie started the pump as is protocol and didn't get a phone call back for days, all the while our Sugar Babie's numbers went up and up every day without changes being made. Our OmniPod trainer's hands were tied and she could do nothing to help us. Even when I did finally talk with said nurse they made some changes and suggested I put Our Sugar Babie in a onesie to prevent him from trying to pull at the pod while wearing it on his bottom. What two year old wears onesies...and I informed them that there were supplies out there to help to keep the Pod in place and that onesie's were for babies which my son is not. Even after we decided to go back on shots our OmniPod trainer called said nurse to discuss how to best support our family and said nurse never called her back. Based on this and everything else we had experienced, I decided to not go back to see this particular nurse and scheduled our next visit with a different nurse knowing that it may cause some tension but I was okay with that and so was hubby since he had been at all the visits with me and was feeling the same way...and let's face it he wants to support me.

So, two weeks ago we had our visit with the new nurse and yes, you guessed it we ran into said nurse who did a double take when we were coming out of the office. I kindly said "hello" and said nothing more. While waiting for the Endocrinologist, Sugar Babie and myself were in the hallway and ran into said nurse again and they turned and went the other way. It felt awkward and I said something to the new nurse about it and they said it was okay not worry about it, that patients see other nurses all the time. We left that visit with Aprida by the way! Our Sugar Babie has been crashing an hour after dinner and it's been taking juice and more juice to get him back up again before he can go to bed, so the doctor thought we should try Apidra and see if we could get rid of that Humalog tail that they thought maybe making him drop. So, I felt really good about that since I have been telling the other said nurse about this and they just kept blowing me off.

The next day, I had to call into the nurses to discuss one of the changes the doctor made and ask for a script for the ketone strips for the blood ketone meter that the new nurse gave to me but didn't know that the strips didn't come with it and wouldn't you guess it but I had to speak with said nurse. They stated that to be honest they weren't that familiar with reading the ketone meter...didn't I just get it the other day out of their own supply closet and isn't their job to keep up on the latest technology available? This is coming from the same nurse who stated that I needed to keep a cotton ball in my son's diaper 24/7...hell to the no was I going to do that! They inquired about who we were seeing on our next visit and I thought that was rather strange but said we were seeing the other nurse and yes, I made an excuse as to why we had to change our appointments etc. not my finest moment but I hate being put on the spot sometimes and just didn't want to get into a discussion about why I didn't want to see them anymore. I know, I am a coward.

Fast forward to this Friday afternoon. I had to call the nurses again because it seemed we were having some crazy problems with Aprida and I wanted to run Our Sugar Babie's numbers over with them and discuss if what was happening was just a coincidence before just giving up and going back to Humalog. Yep, you guessed it said nurse again. I started discussing the situation and I could tell they weren't really listening. We went from talking about Apidra to them stating that Our Sugar Babie shouldn't be fighting insulin injections anymore. When I say Our Sugar Babie fights, I am talking about squirming, some crying and fussing about shots...he isn't pulling my hair and scratching out my eyes. They went on to say that the two year old's that come in all just give their parents their arm and let them give them the shot and Our Sugar Babie shouldn't be fighting anymore. Are you kidding me...my son was taped into his hospital bed in the PICU just so they could do a groin iv since all the other multiple attempted iv's the nurses placed didn't work...can you say traumatized! I was floored to say the least that they had the gall to say that my two year was the only one on this earth who fusses about shots. Here I am trying to give my son the best possible care and you are comparing my diabetic child to another diabetic child. I felt my blood boiling inside of me. My heart began to race. I decided that they needed to know my educational background and that I have worked hard at getting my two year old son to understand his diabetes and erase the trauma as best as a two year can through medical play etc. etc. etc. and that my two year old couldn't be the only child fussing about getting a shot. Said nurse responded by stating that every child has a currency and that they were going to start insisting on other treatment strategies soon and we couldn't stay on the insulin regiment we were currently on. I said that I was not raising my child to be materialistic and rely on material things to get him what he wants in this life and that indeed no Our Sugar Babie didn't have a currency as they had stated all children do and they quickly ended the phone call by saying good luck with that.

I put the phone down and said to myself, I can't let this continue to happen. I immediately called back to the office and asked to speak to said nurse. As a professional counselor, I know that when you are upset with someone you should always let them know how you feel and not continue to let it eat away inside of you like I have been doing for at least a good 6 months. Said nurse answered the phone and I told them that I was very upset by our conversation. That comparing my child to any other child just isn't appropriate and that everyone and every family handles diabetes differently and that they had made me feel like I was a bad parent and not taking the best possible care of my son. Their response was "would you like for me to respond to that" I could not believe it, no "I am sorry you feel this way" or "how could I have said things differently to not make you feel like this." I told them that they could respond or not but unless they were a parent of a diabetic child they had no idea what it's like to care for one. That being a diabetic (which I know they are) and a parent of a diabetic are two completely different perspectives. I went on to say that from now, I was going to let said nurse know when I wasn't feeling supported by them and their comments/suggestions and that my son wasn't just the patient but support was needed for his caregivers too and if other treatment strategies were being thought of I should be hearing about them from my doctor not the nurse. Their response was that I shouldn't call if I didn't want their suggestions. I then stated that the suggestions were welcomed just not in the condescending tone. Said nurse then said something that I should have seen coming. They inquired again about whom I was seeing on my next appointment and when I told them it was the other nurse they stated that I should continue to see them. My response was that after this I planned on it and they said "good." I went on to say that it was uncomfortable for me to call into the nurses with a response like this and their response was that the next time I call, I should leave a message stating that I didn't want to speak to said nurse. The conversation was quickly ended for it was going no where fast and I immediately called back to get the Chief of the Department's name and number for which I plan on having a conversation with on Monday. Do you think I should mention to them that they also made a comment about Our Sugar Babie and sissy pants?!

I am upset, very, very angry and to say the least fearful of the care my son will continue to get from a place I put so much hope in. I thought that my son was coming to a place that cares for his needs and our needs as a family. Boy, how I am disappointed but then again there goes my expectations. Where has the team approach and professionalism gone these days? Where has the politeness, respect and positive affirmation gone these days? Where is there true customer service anymore? I truly feel like my son has always been just a number on a chart to this nurse and I don't want them anywhere near him in the future. I feel so sick to my stomach and although it helps to write this all out here. I think I am going to go and throw up now.