Home and Doing Well!

Ethan had a good weekend at home and seems to be pretty much recovered from his respiratory illness.  :)  He just finished his antibiotic for C. difficile and we may start another round of antibiotics as we're not sure it is out of his system yet.  We also do not know if he needs to be clear of this before he can go back into the O.R. (for traction and then surgery), how we're going to go about getting his three clear samples (which you need to be considered C. diff free), or what our next course of action is...  But he is starting to get back to his usual routine, which is great!

Ethan Tries to Self Wean

Two days ago, Ethan rubbed his nose a couple times and moved his oxygen nasal prongs - perhaps in an attempt to self wean off the oxygen?  He was only getting 0.2 litres of oxygen by prongs when he did this.  As of yesterday morning, Ethan has been off the oxygen and on room air!  :) 

We just received our discharge papers so he will be home for the weekend!  Maybe a birthday gift from him for Omi as I know one of her big wishes was for him to be home soon.

Moving on up...

Ethan being cute in the critical care unit.  

This picture was taken two days ago.  After 11 days in critical care, Ethan was just sent up to the regular floor to continue his recovery.  They were able to really wean his oxygen down to 1 litre by nasal prongs and he is doing well.  :)  Hopefully it won't be long now until he is home again.

Now with crazy hair and visiting with his sister, Ethan is in his new room. 

Over a Week and Counting

We've now been in the critical care unit for over a week.  Ethan's oxygen needs have been going down and he looks great.  He is well rested and in good spirits today.  He still sounds a bit chesty but is doing pretty well.

Yesterday morning he woke up at 4 am and decided to party for a bit.  He had fallen asleep before I arrived at 9 am and had a long nap.  He looked so relaxed...

His oxygen monitor reads 17 and 60...this morning he is at 14 and 45.  :)  We're really going in the right direction.  He was given the green blanket above during his visit here but it was thrown into the wash here and lost.  :(  He also received a really nice e card from his friend Sophie.  Thanks for putting a smile on our faces Sophie!  It is nice to know you're thinking of him.  :)

Unfortunately, this morning he blew his 3rd IV.  I'm not sure if you can tell just how puffy his poor right hand is right now...but it is interesting to note that his fingers don't look quite so long.  His geneticist had said that his fingers look SO long (everyone points it out) because he doesn't have much weight on.  And now with his puffy hand, I can really see that his fingers don't look quite so long anymore.

Five Days and Counting

This morning at about 3 am marked the fifth day that Ethan is in the critical care unit.  His chest x-rays show improvement and he is back to his usual self, but is still requiring a fair amount of oxygen.  Due to his oxygen requirements, we'll likely still be here for a bit longer.  He is on his 3rd IV, has continued to removed some of his leads/probes, tried to remove his nasal prongs again and they have restarted his feeds.  His sleep is still all over the map, but he does get a few hours through the night.

In the above photos: the first one was taken on Friday afternoon when he started smiling at me and being more aware; the second photo was taken on Saturday - he was looking for me, smiling and giggling at me and playing tickle games; the final photo was taken yesterday when he was playing with his iPad and watching TV.

A couple of days ago he also tested positive for c-difficile again so has additional antibiotics on board to combat that.  A usual course to fight c-difficile would be to stop the antibiotics he was on, but since his chest is still quite weak, the felt it was better to continue the course and add the c-difficile fighting antibiotic.

We still do not have any news on his upcoming surgery but do know that he will likely have to be home and healthy for 4-6 weeks before they will be willing to mess with his airway to sedate him for traction...

Potential Delay in Plans

So seems our plans may be changed again...

Ethan went to therapy last week for his monthly stay and unfortunately when he got home on Sunday within 9 hours he started vomiting and had a fever.  He continued to have a fever, vomit and started to have really foul smelling stool through to Tuesday afternoon when I brought him in to be seen by a doctor to see if he had an infection.  His ears seemed like they could be on the verge of an infection so he prescribed something to stop him from vomiting and wanted to see us in 24 hours.

Meanwhile, on Tuesday we got the news that Ethan's Shilla procedure has been approved!!!  :)  Plans for his traction and surgery are in the process and as I hear more, I will post it.

Back home with Ethan's anti-nausea meds and he did stop throwing up but his stools were getting looser and he started to have respiratory issues.  He did great with the anti-nausea meds for his first two doses but then he started to throw up just before his next dosings.  Just over the 24-hour mark, we brought him back to the doctor he'd seen on Tuesday and at first things looked alright...then they checked his oxygen saturation levels.  Now I know there is a chance their equipment wasn't reading well...but he was reading at 61at the low end and 81 at the high end but a lot closer to the lower end for much of the time.  They tried to do a nebulized (wet) treatment to help open his airway but then had to set up an oxygen tank.  They called the paramedics and we took a bumpy ride to the hospital ER.  His oxygen saturation was still an issue, but wasn't as low as at the clinic (he'd also received oxygen through the ambulance ride).  After several hours in the ER and discussions on where they would admit him, we were admitted into the pediatric critical care unit.  Since his only really need was for oxygen, they had hoped to get his needs low enough for them to send him to the floor to recover...but he just would not tolerate having his oxygen level reduced.  In the unit he was on 100% oxygen for over a day. 

Yesterday they tried to wean him down during the day and we got as low as 70% but at night we had to go back up to 80%.  Today while he was awake they were able to bring it down to 65% but as he falls asleep they have to raise it again.  We have sent several 'failed' stool samples - apparently formed means something different to the lab than it does to us - and his nasal cultures came back positive with metapneumovirus.  Despite still working hard to breath, ending up with a useless IV (that had to be restarted - 4 try trauma) and having blood drawn frequently, he is pretty alert and active.  At times a little too alert.

He pulled out his nasal prongs and tried to challenge himself without oxygen - he failed and has pulled off a couple probes, his oxygen saturation monitor, and keeps fighting sleep - which he desperately needs.  If we can get his oxygen needs down we can move up to the floor for continued recovery.

What does all of this mean though for the progression of surgery?!?  We're not sure yet, I'll touch base with the surgeon's office next week to see if we have a plan we can proceed with...