What's up with Sunday's

I swear these boys are trying to kill me on Sunday's.  Every other weekend I don't have a nurse from 5p on Sat. until Monday morning.  Typically I don't mind b/c it's nice to have my house and my kids to myself.  However, the past few Sunday's certainly has me questioning why I liked not having a nurse :). 

Exhibit A (the crime scene)



Isaiah woke up first thing in the morning retching.  I assumed at first it was b/c he had not had a bm on sat.  Often times he will do a bit  of retching prior to a bm but then it will resolve once he does go.  Not the case on Sunday.  I had given him miralax and a suppository in hopes of resolving the retching but that would have been too easy right??? I forgot to mention that I had come home last the night before b/c I went to a friend's house warming party.  So needless to say I was NOT on my game on Sunday.  Not that I expected the boys would be angels but I guess I hoped.

Meanwhile, Avery had gotten his morning meds which is a very slow and long process.  He has the tendency to vomit right after his meds regardless of them going into his j tube.  He "should not" be able to vomit according to most drs.  Somehow Avery has defied that theory and will vomit within seconds of getting the water flush.  This Sunday morning was certainly no exception.  Once I finished the flush, within seconds he starts vomitting (very large amounts).  As you can see from Exhibit A, Milo felt the need to clean it up.  Ugh.  You can also see that Isaiah looks miserable b/c of course he continued to retch horribly. 

So that was pretty much the pattern until about 12p.  Avery started to get very junky from all the vomitting which then creates its own respiratory madness.  Thank God for naps, put them both down and was able to pour meds for the afternoon, evening and the next morning as well as prepare Avery's TPN, Isaiah's insulin and make formula.  So much for relaxing while they sleep, baaah. 

Once they got of from the naps Avery looked much better and I guess decided he had put me through enough.  Isaiah however had other plans.  He continued to get worse and worse as the afternoon progressed.  His blood sugars were over 340 which is really high for him.  I feel like he is barely a diabetic on most days so when he gets high numbers like that it does make me nervous.  He has parameters to add another insulin but I decided to wait a bit and recheck.  His numbers did come down to 250 which was much better so I did not give him the humalog.  Isaiah continued to look real bad.  I had him on the pulse ox and he actually desatted to the 70s which also scared the crap out of me.  I am so used to doing all the running around and being scared to death with Avery so when it comes to Isaiah I feel a bit lost.  Now mind you, prior to Avery coming into this world I used to call the ambulance on Isaiah on a pretty regular basis.  He has just been stable over the past 4 yrs that I forget about how "unstable and scary" he can be.  I also have to say that I am NOT liking his cycles AT ALL lately.  He is just getting sicker and sicker with them.  We have totally run out of options for treating them.  The last one was depakote and our genetic and GI dr. are dead set against it for Isaiah.  It can cause permanent and quick liver damage on a kid with Isaiah's mutation so it's not worth it. But it is hard knowing that there is not much we can do about it during these cycles.  It's heartbreaking actually. 

By the next morning, it was as if nothing ever happpened.  Isaiah was back to his crazy, crazy self and Avery had only vomitted once yesterday.  Hmmm, and my nurse was worried about that.  If she would have only seen them the day before.....I did manage somehow to give Avery his first low low haircut.  That boy's hair grows like a weed.  I actually call him "Juan Epstein from Welcome back Carter", lol.  But now he looks like a grown up handsome guy :)

Hopefully the next Sunday I have no nurse these boys will have some mercy on their momma.