Back a Few Steps

Avery has been making progress respiratory wise.  He is only on the bipap for naps and bedtime which of course he is not thrilled about.  During the day he is up in his wheelchair on nasal cannula at 3 liters which is a change from his norm.  He typically is not on any O2 during the day and sats fine.  I suspect with time he will be back to his baseline.

However the big demon we are facing and will keep us here for quite awhile is the sedation meds.  UGH!!!! He is still getting versed and fentanol continuously and on top of his increased methadone, Valium and clonodine.  The problem is he cannot go home on the versed or fentanol.  He typically is on the other meds and they have increased them but Avery has still been going through withdrawals.  He will sweat tremendously, have low grade fevers, dilated pupils, and screaming.  So obviously we cannot have him go through withdrawals but he needs to come off those meds.  The drs. are hoping with increasing his Valium and methadone that they can slowly decrease the meds.  It just all depends on Avery and what he will allow.  We could be here for at least another 2-3weeks.  While I know it has to be done safely and we have no choice, it is so frustrating that we could be here for 8 weeks over something that was totally preventable.  Again I use that word.......As you can see I am still upset that Avery and our family had to endure all this. 

Although I have decided to try IVIG again but doing it through the skin instead of IV.  This is supposed to be safer.  Of course I am a nervous wreck about it but it is something that Avery depends on.  Especially since he is more vulnerable to infection with living in the hospital.  His levels have declined to the point of him needing these infusions again.  Please pray that he has no issues with it.

It is at the point now that I am going to have to leave Avery at the hospital more b/c I have to spend sometime with Janessa and Isaiah and still work.  Basically our summer has been spent inpatient and it totally sucks.  Rick and I have been planning a white water rafting trip with some friends and we are still going.  We really need the time together to get a break from the medical world and just be a couple for the weekend.  Avery has been on the unit long enough for the nurses to know him so well which makes it easier for us to leave him.  I also want to take Ness to an amusement park and school shopping before the summer is over.