And the Verdict is...

...no surgery.  At least not yet.  We're going to try casting him first.  To cast him, they will put him in traction (kind of with fabric to straighten him) and cast his chest.  The cast will be on for a couple months at a time.  So he will not be able to get wet, and will be back to sponge baths.  The hope is that at the very least the cast will stop his spine from getting worse.  At best, it might help straighten him a bit.  It is kind of our last option before surgery.  His spine seems to have gotten worse again, and it not only has the classic 's' shape but is also twisting as well.  We should see within the first two months if it is having any effect.  It seems our surgical option is to have him roded.  To do such, they would anchor to his ribs and just above his hips and try to straighten him with rods.  They would have to be extendable and would require surgery every 6 months to extend and force him straighter.  Although the extensions are minor, the major problem with this option is that each time they go in it opens him up to the risk of infection.  They just need to order in the supplies for the casting and book a date.  They figure he should be casted within about 4 weeks.

More on Three Years Ago...

I intentionally kept quiet on the blog the past few days because it took this long three years ago before Ethan was sedated, MRI'd and had a biopsy of one of his growths (the doctor was able to take the full nodule from his neck, reducing his tumour count).  Four days of waiting for them to start working towards finding answers was torturous for us.  The results took a while to get as well but I'm not going to hold off that long to write again, as honestly I do not remember how long we waited...I can say it felt like FOREVER!!!  In the end, they were able to tell us that he has a large fluid filled cyst at the back of his head which pushed the rest of his brain forward as it consumed the space.  The MRI also showed us that he had eight tumours (including the one that was biopsied), most of them were external but he had a significant one inside his chest in the left upper lobe area of his lung.  It was just above his heart but under the aortic arch.  His biopsy results showed the tumours to be Infantile Myofibromatosis.  ???  I can tell you it took a while for us to learn how to say that...let alone spell it so we could research it online.  Infantile Myofibromatosis (IM to some), is a rare condition (by 1997 there were 231 documented cases since the 1960's) which presents with benign muscle and fibre tissue tumours.  The natural progression of these type of tumours is that they grow big really fast and then typically have mass cell die-off over time.  I will post more into the ABC's of E page regarding this condition at a later time.

Three Years Ago Today

Do you recall what you were doing three years ago today?  I must admit my memory is a bit fuzzy, but there is a pretty good reason for it...  I will recount what I can from that time.  At 3 AM,  my water broke and set in motion the scariest and one of the happiest moments of my life.  It seemed like I was having the same child again.  With my water breaking and getting to the hospital at the same time (2.5 years apart).  This time I actually experienced labour pains prior to them inducing me.  Once they induced me, everything was still quite similar to Lorelei's birth.  But as the night wore on, the OB became more concerned with the baby's health since each contraction was causing too much stress on the baby.  He ordered an emergency C-section.  I was quite scared by the prospect, but had the good fortune of already having an epidural (which was difficult to place and not working quite as it should but it did the trick - eventually).  I don't remember much of the actual 'birth' but do recall being worried about the baby not crying.  I kept asking Clayton why the baby wasn't crying.  It took a bit and finally the baby cried!  I was delighted to hear that sound.  As they were stitching me up, they brought Clayton to meet our baby.  I did not know what was going on.  The OB was telling me something about blueberry muffin top none of it made much sense to me.  Then Clayton came with the baby and this is what I saw.

He seemed so perfect to me.  What was the doctor talking about?  They did not give me much of a chance to see my son before they whisked him off to the Neonatal Intensive Care Unit (NICU) and me to recovery.  But they asked us all kinds of questions about our family history.  They spoke of how large his head is and whether anyone in our family has growths, etc.  I couldn't understand what they were talking about...his head didn't seem that large to us (have you seen Clayton's head?).  The next time I saw him, he still looked perfect to me.

Shortly after, they started going over all of the medical things they were investigating and showing us what they were concerned about.  We had a great nurse through labour and she came back when she heard I was being wheeled into the OR to see if there was anything she could do to help.  (The hospital was experiencing some flooding issues at the time - even requiring them to tarp me as they brought me to the OR.)  She offered to take photos of our baby for us.  In the one below, you will notice a large discoloured patch on the right side of his face which was a growth.  It was one of his tumours and it engulfed his entire ear. 

On visual inspection, at birth we knew of 4 such growths...but they were nothing the doctors knew much about, so they planned a biopsy and an MRI.  We were crushed that our son was not born healthy.  We were scared about a prognosis or finding one or even what it all meant.  I felt so alone, so isolated, so 'how could this be happening'...

Getting Better...

We have already started to discuss a discharge date and time provided we are able to fully wean Ethan from the oxygen and he continues to do well.  Today he was feeling better than he has in a while.  He even helped physiotherapy with his chest physio.

Although it looks like he has a little belly, he has lost some weight and we are in the process of trying to get him to regain the weight and then some.  He also enjoys more time in the loaner stroller watching TV with me...

...and playing peek-a-boo.

They were able to lower his oxygen requirements again today.  He is now getting 0.25 litres of oxygen and keeping his stats good.  If you can't tell, it says his oxygenation is at 94%.

I took a couple random pictures of Ethan today during our TV/hand holding/play session today.

You might notice his left hand is pretty scared up...much of that is from the tape they had to keep the IV in.  He has such sensitive skin.

Then, after days of fighting naps I got this one of Ethan today.  He was so tired he finally fell asleep at 5 PM and napped for over two hours.  He woke up in time for his visit from Lorelei.

"Oh Wow...

...it's normal!"

"Pardon?
I'm sorry, what did you say? 
Can you repeat that again?
No, wait can you put that in writing?
We don't hear that often!...Especially when it come to him (Ethan)."

"I can imagine, and it's not often I get to see a normal ECG."

This was one of the conversations between myself and a resident while we were still in the PCCU.  I figure, since she didn't give it to me in writing I should put it on record somewhere. 

Ethan in his new hospital room.  You can see the handle of the loaner stroller the hospital physiotherapist has us using to get him into a slightly reclined sitting position.  It is a Kimba (a brand name for a Special Needs stroller).  Before this admission, we had trialed the larger Kimba at home.  Although his one arm is in an awkward position, it mostly looked like he was hanging out in an easy chair.

Ethan has gone through two IVs this admission.  I was just about to complete something for him on the Wednesday when he blew the first IV (check out the New Vocabulary page to learn more).  Thankfully, I got the second one made in time so he could wear it for a day or two before losing his IV again yesterday.  Usually every admission requiring IV we fuss and battle with the hospital pj tops to get them to somewhat cover him without being too restrictive and uncomfortable.  This time he went without a top for the first week or so...until....

I made him a new top...perhaps altered is a better word to describe it.  If you zoom in you can see my sewing skills aren't so great...but I put snaps along the one side of his shirt so it can accommodate the IV and still keep him mostly covered.  Okay, so when he's rolling around and playing it still doesn't give great coverage but you get the point...I think.