Not Just Sick...

...but admitted again.  Ethan was admitted today because his vomiting and fevers have not improved, they actually got worse last night.  He is on oxygen again and is getting IV antibiotics.  He was having respiratory distress and they were not able to fully assess him so they removed his cast.  After 19 days it left a few pressure sores which will hopefully not recur next time.  It took a couple doctors from the Orthopedic Surgery team to get the cast off.  It was that thick.  Just out of curiosity we had them weigh the cast...it was a whopping 5 pounds!!  It is nice to see his chest//back again but I hope they are able to recast him again soon to make sure the scoliosis does not progress.

Where Does One Buy a Bubble?

We're really starting to think it might be easier to keep Ethan in a bubble!  He's sick again.  :(  He was in therapy all last week (longest time he's been away from us) and we got a call on Saturday morning to bring him in to be seen by a doctor because he was vomiting and had a fever.  Ethan doesn't typically get high fevers so when they told me it was 38.9 C I figured we best get him in quick.  We dragged him off to the ER and were very lucky because the waiting room was pretty empty.  It was one of our shorter visits to the ER as they said he might have a left ear infection, a chest infection or an abscess from the cast and sent us home with broad spectrum antibiotics.  He was fine except for a temperature here and there until this morning when he got sick again.  I brought him in again and his ears still look like they might be infected and we're just continuing with the antibiotics.  If he does not get better within another 48 hours we're to bring him in again.  And tonight he's spiked another fever and was sick shortly after his antibiotic.  We just hope he was able to keep some of the medication down.  Now we're waiting to give him his next dose of Tylenol...

Back to the Back

So, I'm playing a bit of catch up again as life at our house can be pretty busy!  Last month, I took a photograph of Ethan's back pre-casting.  His scoliosis is another one of those elephant in the room diagnoses, which we had hoped would correct itself with seating and bracing.  I have not taken any pictures of his bare back, I guess it is our way of not really acknowledging it.  The 'if we don't see it, it isn't really there' kind of thing.  Alas, it is there and I am posting his before picture in great hopes that we will have surprising after photos.

April 29, 2011 the morning of his casting, I took a few more photographs as we anticipate it might be some time before we see him without a cast...for all we know he may outgrow his clothes during his time with a cast.

Waking up my handsome little man was playing in his crib before we got him out.  We had to be at the hospital for 6 AM and he woke up early for it.  At least we did not have to deal with a grumpy little boy who was ripped from his sleep.

Above, you can see in his lounged position how bad his posture is.  Although his eyes look closed, he was quite awake at 5:30 AM.

This picture is a true depiction of how bad his scoliosis has gotten.  Despite our best efforts, he has been leaning to the right more and more.  We have been trying to prop him from the left (apparently if you prop that side it should force him more straight), but as you can see it is without great effect.  He is also leaning a lot in his custom seat.

Just before his OR time, Ethan started to get really sleepy.  And he came out of the OR rather cranky.  This crankiness lasted a few days until he resigned himself to being in the cast.  He still cries out at night and needs to be repositioned frequently but otherwise is handling it well.  We did have to bring him back to the hospital Monday following his casting to have them cut it a bit to allow his legs to move better.  As you can see below, it is quite long.  Positioning, seating, playing and diapering have become interesting challenges.

The cast is about an inch or more in spots and is mostly plaster of Paris with a coating of fibreglass.  Which is to say, it is HEAVY!!!  We saw the surgeon yesterday and he plans to make the next one a bit more form fitted with less plaster of Paris.  It is a process of figuring out the kinks.  Ethan has a lot more gas issues and is experiencing increased reflux since he has been casted.  Ethan will go into the next two casts one right after the other before he and his skin might get a break from casting.  The surgeon told us after he casted Ethan that his curvature was about 75-80 degrees.  Which is a significant curvature.  Surgery is usually suggested at 45-50 degrees.  We are very hopeful that the casting will improve his back. 

Some Good News

On Tuesday, Ethan had a dental appointment which went pretty well.  "Dare I say his teeth seem normal?" the dentist asked.  We feared he was doing a lot of damage to his molars through grinding, but his teeth are sound.  He does have some inflammation the dentist can't account for so he is sending Ethan to a specialist.

Today we had our two week follow up post surgery and the Neurosurgeon is pleased with how his incision is healing.  We were a little concerned because he's developed what we call a 'fin' at the incision site.  Today I found out the fin was caused because they had to remove a bit more bone when they went in to open the cyst.  It is anticipated that it will heal in time (not look so lumpy).  Now we just have to wait to see what his MRI (which we hope to have in about a month's time) says.  If there is any growth, we operate now.  If there is no change in growth than we watch and wait.

So far we are still on track with Ethan's cast for Friday.  :)

Quite Unexpected...

On Friday when I got home from work there was a message on my machine.  An emergency case came in and Ethan was bumped from his OR time on Tuesday.  :(  They will see about scheduling him in the following Tuesday or soon after.

In our wildest dreams, we did not anticipate that would hold up his casting.  We figured if anything, he would not be well enough to be sedated or that they would not feel comfortable doing the sedation.  We got the all clear from anesthesia's point of view before leaving the hospital and we've managed to keep him well enough.  Now we have to try to keep him well for at least another week.  DOH!

I guess in an attempt to find the silver lining in this...it does give us additional time to try to put more weight onto him.  They have increased his caloric intake in an attempt to have him at a weight that if he gets sick again it won't affect his body so much.

A Week Post Surgery

And we're still in hospital.  (Originally written on the weekend.)  IF everything is good on Monday, they hope to discharge us...but his incision site is starting to bulge a bit and is sometimes red.  The resident wants the Neurosurgeon to look at it on Monday as he feels she may want to image it to see if there is fluid collecting there.  If there is fluid build up, they will have to open up the incision site again.  He is doing pretty well otherwise.  The only other down side is that he isn't sleeping well at all.  He goes without naps and then barely gets 6 hours total in the evening.  He seems to startle easily and wakes for no known reason.  I spent one afternoon trying to get him to sleep and he finally fell asleep at 1655 and was screaming in pain and awake again before an hour was up.  He is so tired, but keeps fighting it.  I just hope he gets back to a more normal sleeping pattern.

These photos go back a bit, but they were taken the day they extubated him.  First they started with nasal prongs and blow-by oxygen...and they quickly progressed to just blow-by.

By the next morning he was off all oxygen and his oxygen saturation was at 100% !  :)

A couple days ago we were encouraged to get him into a sitting position.  He did not tolerate being in the Tumble Form for long at first but we were able to build him up to an hour or hour and a half.

Letting him play on the computer, helped a lot too.  ;)  He was really enjoying the sounds the screen was making in response to his touch.  Lots of giggling!  :)  Definitely daddy's boy!

We were discharged this evening and have him home again.  :)  We are to keep a close eye on his incision site and are to return if anything seems amiss.  We will also have to follow up with them in two weeks time.  But for now we are focusing on his admission for next week (to get his scoliosis cast).

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...