MRI Day

So Elan is right now in the MRI while Erik and I are in the cafeteria waiting.  We went up to the children's hospital to basically distract us and ran into several of Elan's nurses as well as both doctors who took amazing care of him in the PICU (Ped. Intensive Care Unit).  Just great to be able to give them great news of how well Elan is doing.  They don't often get this kind of news. 

We had the same anesthesiologist as we had a few times ago.  He is so kind and caring.  I would guess late 50s.  He always is so thorough when going over Elan's history and so positive!  He and everyone there were blown away at Elan's progress.


We went to see Elan in the recovery and we had to wait 2 hrs to rule out Malignant Hypothermia - rather a shock.  This is the first time Elan really has ever had an issue with anesthesia .  IT would be unbelievably odd for him to have it esp since this is around the 40th time he has undergone anesthesia but his breathing went a bit out of whack.  If it was his 2nd or 3rd time, yeah, but 40 or 50th?  Not likely.  They switched monitors during it all but at the same time changed a few other things so just wanted to rule it out.  It came back negative which is great because unfortunately he will be going under anesthesia for several more years (hopefully!)

Finn had a blast while we were at the hospital with my mother and even wanted her to take him to gymnastics.  He is so cute there!  It is at a real gymnasium so all the great equipment.  There are 2 girls and one other boy during his time.  A young man -  I would guess around 16 goes and trains - the 2 boys are in awe when he gets on the horse - so adorable!

in recovery with 2 nurses who are regularly up there and our anethegiologist

drinking juice - arggh! (See below why giving that to him) and watching netflix - what would we do without that these days in the hospital?



Rhonda our nurse this time.



So we were feeding Elan with a Whole Food meal replacement (photo below for those feed tubing and wondering).

well I have only used a few times and was a bit distracted so didn't stir as well as I should have.  So we clogged the MicKey!  This is the first time this happened in all these months.  Thankfully we were at the hospital.  Well they tried to get us a replacement there and they made tons of calls for us but of course didn't have his specific size in the entire place.  We only replace every 3 months and insurance hasn't approved of a replacement - as if not having an extra is a good idea.  What if he couldn't take anything by mouth?  It was leaking too after all of the messing around with it...  We ended up not having one at home after all.  Erik was at work and started calling around with one being sent overnight as the resolution (may not be covered.... we will see about that :)) The hospital sent me home with Coke to eat up the clog once I get it out of him.  Well I had to take Elan's micKey out all by myself and keep him on his back (not easy).  This is because it is just like an ear piercing in that it can close up again so had to be fast... but after about 20 minutes got it out.  Just not a fun day!

Well Elan and I had fun after that just the two of us!

Playdough outside after being inside.  Notice Elan is drinking milk now (goat's milk)!  He does water out of a regular cup too without coughing etc.