Since I last posted things have been very busy around here.  Avery has been suffering from respiratory issues for over a wk now.  At times he is requiring 4liters of O2 and desatting over his bipap.  He is requiring lots and lots of suctioning and chest pt.  If any time goes by without any of the intervention then it quickly settles into his lower lobes of his lungs.  I am nervous especially with his Igg levels being low. There are also alot of sick people lately with the flu, UGH.  I have had my bags packed since the weekend just in case but am hoping not to need them at all.  I would like to take longer than a month off from the palace.  I am finally catching up on alot of work and I don't want to break that grove.  Thankfully I have had alot of nursing b/c he was definitely be in the hospital if it were not for them.  The thing that would send him over the edge would be a fever.  The other thing is PACT is trying to wean down his methadone which is NOT working.  I think he is fine where he was and I don't want to mess with things if they were working. As it is he is not falling asleep until at least 10p and yet he is so exhausted.  I know he is at a high doses but if that is what he needs then leave him be.  So he certainly has alot going on but one thing at a time.


Isaiah is still not himself these days.  He is back to having retching cycles every weekend.  It just really really sucks.  It can be so crazy around here when Avery is respiratory and Isaiah is retching.  I truely feel like it is a hospital ward on days like that.  I am hoping things will settle down with Isaiah but we just cannot seem to find the magic potion to fix these migraines/cycles.

As for me, I have been back to the gym on a regular bases since I was not able to do it all summer.  Been feeling great, UNTIL.....It looks like I have an alien head sticking out of my stomach.  Honestly, lol.  I am not sure if it's truely a hernia this time or scar tissue that has decided to hang off my abdominial wall.  But in any case it just does not look good at all.  People are noticing it.  I have an appt. with the surgeon on frid.  I am hoping and praying it does not require another surgery.  Maybe I can get away with just wearing a girdle, haha.  No seriously.  Not to mention the post traumatic from the last surgery where Avery ended up being intubated just days after.  So let's see what she will come up with.  I like the surgeon alot b/c she really gets my situation and will do what is best for me and my crazy lifestyle. 

I will keep you all posted.  In the meantime, please continue to pray for Eithene.  She is a strong little girl who has been through alot.  She is slowly improving but will continue to need prayers along the way.  Thanks.