Wednesday, January 11, 2012

Hospital - third and final day

This morning, we were back up at the hospital for x-rays of Maddy's neck. Maddy's neck has been of concern throughout her life and is rather complicated - it was first the Hong Kong geneticist who suggested that there may be an instability, and since then it has been assumed and her neck has always been treated carefully, as though a dislocation could occur easily, doing damage to the spinal cord resulting in "paralysis or instant death" as one doctor kindly put it. 

Now these issues have not ever been fully examined or agreed upon. When Maddy was in NICU, the orthopedic doctors wanted to do an MRI with neck flexion and extension, but at the time, the concerns with her airway meant that the MRI was never done. I wrote back then:
My second frustration at the moment is that the doctors are at a headlock as to who is going to do the next tests on Maddy. She needs two things assessed - her airways and her cervical spine. The ENT wants to do the endoscopy to see her airways, and the orthopedic doctors want to do an MRI to assess her cervical spine. For both procedures, she will need to be sedated by the anesthetist. The ENT is refusing to do the endoscopy until the orthopedic doctors assess the spine, the orthopedic doctors are refusing to do the MRI unless Maddy is sedated, and the anesthetist is refusing to sedate Maddy until she knows the state of Maddy's airways and the results of the endoscopy. So no one wants to make the first step there.
When Prof Sillence visited Maddy, he doubted that such instability was of great concern, and since then the orthopedic doctors have all told me that according to x-rays, Maddy's neck is in good alignment and is of no concern. So even after her airways were more stable, it was never considered necessary to have the MRI of her spine performed.

Today the x-rays of Maddy's neck showed the same - the orthopedic doctor snuck in and out and I didn't get to talk with him, but I had a covert look at the notes he wrote in Maddy's file (the nurses don't like you doing that, they prefer you to talk with the doctors directly). He wrote something along the lines of "neck is stable and well aligned, no contraindication for OT". Without talking to any doctors, I was expecting that such a report surely meant an all clear on the neck issues.

This afternoon, however, when the plastic surgeon came around, that was not what he said. He told me that after speaking with the team (being ENT, anesthetist and ortho), they want to do the MRI on Maddy's neck to more accurately assess whether or not there are issues there before proceeding with surgery. After that, we may also need to further assess the airways as well before surgery.

The "good news" is that the team are really assessing everything well so that they do not run into any problems with the surgery. The "bad" thing is that this slows the whole process down. On Monday, I was thinking that surgery might be in the next few weeks - but now, we won't even get an MRI appointment until 2-4 weeks from now, and then they may need to do further procedures before surgery, all of which require us to be admitted to the hospital again. My current guess as to when surgery might be is possibly between 3-6 months away. 

I was a bit upset at the hospital this afternoon and had a bit of a cry. I so badly just want this all to be over - I wish we could just proceed and get it over and done with instead of having to jump through all these hoops. I really don't like hospitals - and get particularly frustrated with the Hong Kong system. Not that I have much experience elsewhere...

I guess at least we're moving forward though. Slowly - but safely. And I should be happy about that... 


  1. Keep you and Maddy in my prayers.

  2. keep breathing.

    There is a saying that is probably not what you want to hear right now that says "act in haste and repent at leisure"

    In most European places at least you'd probably have to wait longer and get less time with the specialists and be treated as a slow and stupid human by arrogant doctors. In HK at least I never had that feeling.

    Good luck with the process. The road is long, but you're on the road.

  3. Thanks - I know it is easy for me to look at the issues and at what I believe is important and to forget to stop, slow down and actually listen to them. A few days later, I'm feeling much better with the whole situation (although I still believe that the doctors are once again being overly and unnecessarily cautious about certain aspects). I don't think that a couple of months will make a huge difference, honestly...

    I do have to say though that some of Maddy's doctors do make me feel as though I must have no clue since I don't have a medical degree. They are not as good at listening as doctors who I have seen back in Australia. I think the private doctors are better than the public ones here - many of the public ones are so overworked though, and they don't want to take time for parents who want to discuss the issues rather than just listen and agree.

  4. I hope all is going well. I know the anxiety of health concerns all too well. My daughter (almost six moths old) has spondyloepiphyseal dysplasia congentita (severe), and has to live at the hospital. That's got to be frustrating that the doctors don't treat you so well there. Having a good relationship with your doctors and being a key part of the care team along with them makes a big difference. I hope things are looking up for you!