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Surprise Visitor!

Keziah called this morning to say she was in Bellingham with a friend and asked if she could stop by for a visit. Of course! It was so great to see her (and meet her friends). She looks great. Apollo went right to her and played with her hair- something he's loved to do since he was a tiny baby. He kept saying "Ziah, Ziah" his name for her. I was so happy to see he remembered her. It's so hard to know what baby's understand at this age.

Poor Keziah was practically mauled by the little kids who were so happy to see her.

So here it is, Friday and I sit waiting, waiting for the doctor to call…knowing he probably won't. Wondering if he's gotten a hold of the pulmonologist. Wondering if Apollo is scheduled for an MRI yet.

The MRI is something I'm dreading. It will require a general anethestic again, which means hours of no eating or nursing and two hour drive to Seattle. If you've ever had a child or toddler have surgery, you know how difficult it is for them to come out of the anesthetic.

Since we're in the midst of the holidays, the offices will be closed on Monday, so I will have to wait until Tuesday to call…and say what? I haven't decided yet. I will call, but I'm not sure what it is I'm asking or saying. Getting past the receptionists is like sneaking into the White House to the use the bathroom. You'd think I was asking to talk to Mr. President himself when I want to leave a message for my doctor. 

Apollo's breathing is no different from before. Surprise, surprise….and so we wait…

{I am working my way through the emails and comments many of you have left. Thank you so much for your input and have patience with me while I get caught up!}


  1. Sarah

    If it were me I would say this simple phrase, in what ever type of voice I felt like, “My baby is going to die, and you are asking me to wait? Do you not realize he cannot breathe? Who’s fault will it be if he stops breathing while you are making me wait? Do you want that on your conscious??”
    Any time I made an appointment I would start by saying, “I’m afraid my baby is going to die. I need this right away…” Any time anyone tells me they are going to call back I ask what day and time. I always assume they don’t know how to do their job, and I call them a half hour after the time they told me.
    Good luck.

  2. Nina Thompson

    I have had very good luck with the M word….malpractice. As in what their current behavior has amounted to. I would also just take him to the ER at Childrens if they won’t make time to see him immediately. I ask every doctor I see if they truly believe they have a working understanding of the condition presented to them. If they do not feel they are my BEST option I ask them to refer me to the doctor who is…

  3. Em

    Hey Renee, I sent you a message to your FB account – I am a receptionist at a medical office. I gave some tips on what phrases are key to get past the receptionist 🙂 Emily S

  4. liz

    Ummmm. Sarah, I get where you are coming from ,but being in the medical profession myself and my DH agree this would just get the staff irritated with you and thus less of a chance to get an earlier appointment, message to the Dr, refills for meds, MRI etc..
    Patients do die sometimes. It happens. For the most part Drs feel they ARE dong what they are supposed to and usually wont lose sleep over something they feel was not in their control. Alot of what Drs do is “rule out” stuff not ” rule in”. The last thing you want to be known as is the “crazy parent” or “the dramatic one” it would be doing Apollo a huge disservice.
    Being an advocate is one thing..being “crazy parent” is

  5. Heather B

    Ugh seriously what is up with the national guard holding your messages hostage. I LOVE my ulcer doc who was actually a PA. I felt like she really “got” me and totally met my needs. But dealing with the idiot staff people to get questions answered has made me decide to go back to my primary care doc for a referral to a different GI practice.
    I agree with both Sarah and Liz. The problem is once you spend so much time in total frustration dealing with the “medical profession” people you realize most of them really do their job not too well. I guess because they hear/see everything a zillion times so are desensitized to the fact that what thing you are experiencing for the first time truly is crazy overwhelmingly dramatic and you need to feel like competent people are working on your team. It sucks when you are blocked from the competent people by the morons.

  6. Renee

    Sarah- the problem is, I don't think he's going to die…they know even with this condition he won't die…right now…UNLESS he chokes again or gets a bad respiratory infection…they just don't see it as urgent. We see it as urgent because we know he can't sleep and eat on top of the breathing difficulties…

  7. sunny

    I love how proud and pleased those little faces are with their big sister. that is the most adorable photo. They are jsut bursting.

  8. Rebecca

    I just came across your blog. Keep it up. As a person with a Vascular Ring repaired, I can tell you my mom had to do the same. I can’t believe in 2012 it’s still a fight to get a diagnosis (mine was in 1975). An MRI is the best diagnostic tool, but I think they can still go with the barium swallow test, which is a lot cheaper :). I hope you can get into a pediatric cardiologist soon. Good luck, if you have questions I’m happy to help.


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