Venting-GJ tube mishaps

Update on Kairi: I received a call this morning about having to reschedule Kairi’s procedure for tomorrow from one of the GI doctors. Something came up, and one of the main doctor wouldn’t have been able to do it. That’s fine, things happen. Prior to making the decision to do this, I spoke to my last neonatal resident and then proceeded to speak to one of the GI doctors before I signed the consent… form. During that time, we discussed that she had an ASD repair, had surgery for double bubble, and was taking aspirin. At that point, we were able to contact Cardio about aspirin which was then stopped on Tuesday, and also made sure she was on the right antibiotics because of ASD repair. It was decided that it was safe for her to do the procedure at the bedside. However, when I came in this morning, it was left to our nurse (amazing, by the way) to tell me that the date of her procedure was changed due to a risk and must be done in the O.R. downstairs so anethisia good be administered properly if she needs it due to her past procedures of the heart (ASD). I didn’t think it was a big deal, but had questions. What concerns were they and what why did it arise now? This was different than just changing the date because it was bad timing, it was a medical issue. I voiced my concern to the nurse, who was told a doctor was supposed to call me (no phone call.)- they left it to her to relay the message. She was on top of it right away! She went in search of one of the neo team and a gi doctor. The GI doctor was not there, but the doctor she spoke to in the neo team didn’t think I needed to speak to them. (Really??). It was upsetting to see my nurse try so hard only to be ignored. It wasn’t her concerns she was voicing out it was mine. Naturally, I was upset. When the neo doctor came in, she was alone. It wasn’t the attending, I believe she was the resident and proceeded to just talk without addressing any of my issues. I let her talk and it was the same as what the nurse had already told me. I didn’t need another recording. I had questions written down for the GI team and I had questions for them. When I finally started to talk, she interuppted. I didn’t bother asking her to let me speak, and for the first time in a long while, had to speak over someone and voice my concern loudly just in case she didn’t hear the first time. All of Kairi’s medical team has been wonderful in that they all are on the same page. However, our neo team changes from time to time. Her constant are the pulmonary team and cardio team she has that has to work with her neo team. The only thing I ask is that they all work together to be on the same page and treat Kairi as a whole baby -not as parts of the body. We’ve been there, done that and it didn’t work. Everything is a cycle and it all affects everything. Communication between them is key. Communication with the parents is important as well. Knowing her medical history (not just from this week) is very important. When I asked who made the decision to take her downstairs, the doctor proudly said her team did. I asked why did they just bring that concern now, when we have been talking about this for quite awhile. It should have already been out on the table, “Here GI is Kairi’s full medical history. Based on that, we believe that doing it this way is SAFER and better for her.” I have to have confidence that they don’t just keep throwing things out there when they REMEMBER to look at her conditions. I shouldn’t have to be blindsided and told offhandedly that yes we’ve changed the date because of risk. To a parent, “risk” is a big word and a lot of questions arises. Ignoring them, giving nurses attitudes for doing a marvelous job of trying to voice my concern, and coming telling a parent that this is whats going to happen attitude, and then making it seem like I don’t need to speak to or its too much of a bother to call GI (when they were so nice to deal with and had no problems answering all of my questions) is a big problem. When she finally asked what my questions are to the GI she was only able to answer ONE of them and finally said, “you need to talk to GI.” No kidding. As a result, I had to tell the doctor I spoke to that I either need a call today but would prefer to speak to the GI and neo attending tomorrow in person. But, as they are busy, I’m okay with a phone call as well. I wanted to give the attending a piece of my mind… but will be respectful enough to repeat what I believe my daughter needs and that is to have a team that is insync with each other and with the parents to make sure we all make the right decisions for Kairi. I value what doctors have to say, but there is always a second opinion. I’m glad they are going about this safely, but it was unorganized and all over the place. I felt like as a new team they did not fully understand what Kairi had gone through medically and are just now understanding. I just want to make sure that when they make the decision to act on something my husband and I are included. As for the GI team, they have been great and I know will answer my questions just as the cardio and pulmonary team has. When I spoke to the nurse again, she did say that the fellow and attending will make it a point to speak to me with the GI about Kairi’s “small” procedure. For smething like this, it should have been a lot easier to maintain and done. I feel as though doing the ASD repair went smoother than this and was done with more care and respect to the patient and their parents. But, I haven’t spoken to the attending. I’m hoping it’s nothing like the doctor I spoke to. It felt like I was walking into a pissing contest…. except there was only one player. Okay done venting.
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8 Comments Add yours

  1. LindaGHill says:

    I have so been through all this and yes, as parents we’re probably the most important part of the medical team because we keep things together!!

    Where in the world are you? I’m in Canada.

    Could I ask you one favour? Please put in the occasional paragraph break… It’s hard to find where I was when I get interrupted every couple of minutes by my little darling’s GI concerns 😛

    Excellent post and a worthwhile vent indeed 😀

  2. adavis0219 says:

    Thank you! I see what you mean. I got kind of cross eyed when I re-read it. I’ll definately keep that in mind for the future. I spoke to the doctors today (or should I say, A DOCTOR). I’ll have to update this soon, it helps to log everything that’s happened.

  3. adavis0219 says:

    Oh, and I’m in the US. But being in a hospital settings feels like a whole new world.

  4. It’s so hard doing this sometimes. Just went to see our new grand daughter over Thanksgiving. At just a few weeks, she has some problems, but nothing too major. Being with her made me think of you and your little ones. Bless you for being such a good mom! 🙂

    1. adavis0219 says:

      Thank you. I haven’t been on since it’s been so hectic. We did the car seat test today. Discharge date is set for this Thursday. I hope your granddaughter gets well and comes home soon. 🙂

    2. adavis0219 says:

      It’s tough but these little ones are so strong and precious. Congratulations on your grand daughter. How is she progressing? My daughter is now home with the GJ tube, oxygen, apnea machine, and some medications for her pulmonary hypertension. Besides having to go to the ER last night because of her machine alarming my husband and I that she was dipping it has been great. (Oh and she was okay, she wasn’t admitted and I think we had a faulty machine.)

      1. Sorry to hear about that alarm. I hope you don’t get too many false positives from that machine. That can be scary. From what I’ve heard, it’s hard to tune those things because it’s fairly normal for the breathing to get pretty shallow at night and tough to know how low is too low.

        Glad everybody’s home, though. We’ll keep praying for your little ones!

        Thanks for asking about our little granddaughter. We get phone photos of her almost every day, which is nice. She’s doing much better and started to put on weight finally. Just got to see her and hold her at Thanksgiving. 🙂

        Happy New Year!

  5. adavis0219 says:

    Happy new year!! It’s such a special moment being able to hold a treasure like your grandbaby. Thank you for the prayers- you and yours are also in my family’s daily prayer. We are taking it day by day

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