Tuesday, November 23, 2010

3rd Hospital Appointment - DRAMA!

This time, we were scheduled to see the Physiotherapists and then go up to the Paeds clinic.
So we took him to the physios and saw Kelly.  She said that he still had issues with his muscle tone but that he was progressing at the expected rate and that although it is still early to say, she felt that their role with him would be more of a monitoring one.  She said she wouldn't want to see him again for another three months, but that she was leaving, moving down south and Tahnee, the other physio we'd met the first time was also leaving the hospital to go and work for the Children's Development Team.  She said she would refer Joshua to the Children's Development Team so that we could continue to see Tahnee, rather than have to meet somebody new through the Hospital.  She said if I didn't hear from the Children's Development Team in January to give them a call and gave me their details.  This is all sounded good.
Then we took him up to see the Doctor.  This was the same doctor that gave us his MRI results after he was born.  I do actually like her, she seems nice, but she has a habit of giving us bad news.
Like the nurse I saw for his 4 month needles, she couldn't feel his fontanelle.  She sent us for an x-ray right away.  Rod and I had to hold him down while he screamed his head off.  When I picked him up, he vomited all over the floor from being so upset.  We went right back up to see the Doctor.  She showed us the x-ray images of his fontanelle.  It was almost closed.  She also showed us some ultrasound images they'd done of his brain after he was born, where they had done the ultrasound through his fontanelle.  (I didn't even know he'd had an ultrasound! But I suspect there is a lot of things I don't know...)  She told us that he needed surgery to open his skull back up and that this was not the kind of thing they would wait around to do and that we would have to fly interstate to another hospital that week to have it done.  She said that given his high muscle tone, his brain obviously isn't 100% but that he was pretty good and that she felt his brain is working pretty well and she didn't think his head should be that small.  That they'd expect him to be worse than he is for having a head that small.  I asked her "Is his head small because his brain is not growing, or is his brain not growing because the skull is too small?" She said she wasn't sure and that it could be both problems, but that we needed to do the surgery to give him the best chance for brain growth.
So once again, we'd taken him to the doctor thinking he was pretty good and then had a bit of a bombshell dropped on us.  I kept it together surprisingly, considering I am a bit of a serial crier, but later that night I was laying in bed with my beautiful baby beside me and I had a bit of a cry.  I felt so bad for him, he is just a little baby and he doesn't even know what is going on.  How could I give my baby to someone to go and cut him open?  It freaked me out to think that they would be working so close to his brain... his already fragile brain....  I imagined it to be like OOPS one slip of the hand and UHOH, brain damage.  (Well...  MORE brain damage).  But at the same time, if there was any chance of it helping him, then it had to be done.   It was a Friday that we saw the doctor, and she said she'd be in touch with us on the Monday to let us know what was going to happen as she needed time to organise it all.

She called me on the Monday morning and told me she had spoken to the neurosurgeon in Brisbane (which was our preferred location for the surgery to the fact that my mum is there) and they had asked for a CT scan to be done to confirm whether or not the cranial sutures were in fact fused, as it is possible for the fontanelle to be closed but the sutures still open.  That sounded sensible, so we were scheduled for the CT scan that Thursday.  They wanted me to get him to sleep for the scan so that we could avoid sedating him.  This was a little difficult.  His appointment was midday, he usually goes to sleep at 1pm.  If I was to keep him up in the morning to get him tired, he'd just fall asleep in the car on the way to the hospital.  So I let him sleep as normal in the morning.  And he STILL fell asleep in the car on the way to the hospital.  Once we were there, I was trying to rock him to sleep in my arms.  I realised now that this was the disadvantage of having a baby that puts himself to sleep....  being rocked in my arms was a source of amusement.  I tried putting him on a bed and patting him.   I paced around the room.  It was 1pm by the time I got him to sleep, his normal nap time funnily enough!  And then, the had someone that had come in through the emergency department that required a CT scan so we had to wait.  I was thinking that'd be right, I just get him to sleep and then they take so long that he will wake up again before the scan is done!  But fortunately, it didn't take long and we got him in there and got the scan done and he stayed asleep.  The guy that did the scan told me that the doctor would have the results within 24 hours.

I hoped that I would hear from the doctor the next day, but I didn't.  So then I hoped I would hear from them on Monday.  But I didn't.  By the time Monday afternoon rolled around I decided I would call them.  The Doctor told me to call the paediatric clinic if I needed to get in touch, that they would be the best ones to help me.  So I called the paeds clinic.  It was engaged.   I tried again.  It was ringing, but then it went to the tone like I'd been hung up on or that my call was rejected.  So I tried again a bit later and I got the answering machine.  So I left a message saying that I was following up the results of Joshua's CT scan.  I hoped that I'd hear from them the next day.   I didn't.  So on Wednesday afternoon, I was annoyed and called back.  This time a nurse answered.  She seemed surprised.  She told me that she got my message and she had sent an email to the doctor with my phone number and saying that I was chasing the results.  "And you never heard back?!"  No, thats why I am ringing....  She put me on hold for a minute and came back and told me that she was going to page the doctor and chase it up.  I said I really just wanted to know what was going on because when we saw the doctor it was like some big emergency that he needed surgery like RIGHT NOW and now its been almost a week since his CT scan and I am still waiting to find out.  She said she understood and she would follow it up.  So then I hoped to hear something the next day.  I didn't.  FINALLY on the Friday (2 weeks after seeing the doctor originally) she phoned me.  She apologised and said she had been away and didn't want somebody else to call me if it wasn't urgent.  (Well, thats alright for you because you KNEW the results....  I didn't know anything!)  So, the CT scan showed that the cranial sutures are close together but they are not fused so he didn't need surgery.  His head is small and there is nothing that can be done about it.  So basically, having the CT scan done ruled out any issues with the skull fusing prematurely and we know that his small head size is purely related to the fact that his brain is not growing normally.  She said the CT scan also looked at his brain and it showed "significant differences to a normal brain" but nothing they didn't already know from his initial MRI.  So, that's that.  He just has a silly head.  A sweet, silly, small head.  

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