And it Gets Worse...

...Ethan was vomiting from Tuesday through Thursday and was just starting to get over that when he started having an increased respiratory rate, continued to be lethargic and cranky and started having really weird eye movements (nystagmus) that was distressing him (and us too).  On Friday, I got a call at work that he was not doing well and that I should perhaps have him seen again by a doctor.  I had previously left messages with our paediatrician, spoke to an Opthamologist and Neurologist about Ethan's eye movements and the latter two did not seem too concerned by it.  I contacted the paediatrician's office again and she called suggesting we head to the ER instead of coming to her as she was starting to think it might be his shunt.  I got to the ER by about 1630 and outside there was a huge line up of ambulances and police cars.  Oh great, I thought I would have a crazy long wait to get him seen.  As it turns out the crowd was for the adult ER side and the children's part was empty.  YEAH!!!  We got him into his usual bed in the ER (how sad is that that we actually have a usual bed in the ER now), and they started concentrating on his respiratory distress.  I was still pushing about his eye movements and later on Friday night we did a CT scan.  It showed that his Dandy-Walker cyst had resealed itself and grown a bit.  We spoke with a Neurosurgery resident and they tried to contact the Neurosurgeon at some crazy hour.  The resident did not think they could send him to the operating room until his respiratory concerns were sufficiently addressed.  Clayton had gone home upon my urging to be ready to bring Lorelei to her swim class on Saturday morning and I sat in the ER all night thinking...and crying.  It felt like we were back to square one with Ethan.  Back to him having a cyst pushing on his brain and causing him issues and having lots of breathing problems.  It was a long night to say the least...I actually did manage to catch an hour long nap on one of the ER beds once Ethan seemed to be a bit more stable again with his breathing and while he was sleeping.  The Neurosurgeon came in around 7 AM, took a look at his CT scan and went looking for paperwork before heading to me.  I knew right away that meant we were going into surgery again.  His surgery lasted about three hours and in that time I rested another 20 minutes while waiting for Clayton to meet me in the waiting room.  Once they got Ethan settled in the Paediatric Critical Care Unit (PCCU), I crashed for a couple hours in his room.  He was still sedated and on morphine, so we chose to both try to catch a good night's sleep and went home that night.  He had an uneventful night (which is of course a good thing), and headed to an MRI the following morning.

We arrived back at the hospital and waited for him to complete the MRI then followed him back to the PCCU.  This photo was taken just shortly after our arrival on April 3rd.  The tube attached to his face is his breathing tube (in case you have not seen a nasal intubation before).

They turned off his sedation and morphine midday in hopes of removing (extubating) the breathing tube.  He didn't take long to have periods of wakefulness but was still pretty tired so they were not able to extubate him.  In order to do that, they want the child to have enough energy to clear their own airway and breathe on their own.

It took an hour to intubate him for the surgery and they tried several methods before having success.  They did determine that the LMA works well and that he can be masked and bagged to keep him breathing pretty easily.  They also validated our years of telling them how difficult he is to intubate.  The tube they finally got in was a bit small and air kept leaking around it once the swelling had reduced, so his machines were alarming a lot.  We had allowed them to give him morphine but only during the time he was intubated because if he started having breathing issues he was already attached to a machine that does it for him.  Once they started talking about extubation, they agreed that the morphine should be stopped due to his sensitivity to it.

With the shift change on Monday they decided it would be best to wait for ENT to be available before extubating him, just in case he was not able to fully breathe on his own.  They had turned down the ventilator, and Ethan was mostly breathing on his own with just additional pressure provided for him.  He had more waking periods and even started to watch TV (one of his favourite activities).  His eye is a bit swollen from all the IV fluid but other than that he was making better eye contact and his nystagmus is reduced.

Yesterday he was awake since before my arrival and was experiencing more distressed about his breathing tube (which is apparently quite common).  They took it out around noon, without any issues, and put him on nasal prongs and blow-by oxygen.  He is much more happy without the breathing tube in him!  Sometime last night they were able to fully weaned him off oxygen.

Now for the elephant in the room which I have not discussed yet...the MRI results.  They showed the surgery was successful...but they also showed there is another cyst which will require attention.  They plan to do another MRI in a month or two and then depending on the size of the cyst we will book an 'elective' surgery date where they will plan for a longer surgery to go in and open that cyst (in a location they could not get to from this surgery) and perhaps look at doing more work on the cysts the Neurosurgeon just reopened.  If you noticed the 's' in the last use of cyst...then I will tell you it is not a typo.  His previous cyst was actually two and it seems to have turned into three...and he has the fourth growing in a different location.  Hopefully once this has been addressed, he will not have any more regrowth.  There is a chance he may not...