copy of an email sent to provider looking for updates on Megan.

 Sorry for the delayed respond time.  It has been a rollercoaster around here between Maxim, nurses, all-nighters and Megan's GI and seizures.

Maxim is patching our nights but at this point each week I have been up 1 - 2 nights per week all night long which knocks me out for the following day to be good for anything.  Work and dr. appts have been being juggled around this.  

Maxim does not have ANY candidates for nites.  Sent one nurse who is waiting to be let go from current job then can come on board but when that will be we don t know. She thought by July 1.  She worked one nite so far along side of Another nurse but has never worked with Megan alone.  A couple of nurses have declined due to complexities - suctioning, etc.  Apparently they are intimidated.  

Megan has had ongoing GI issues - bleeding, vomiting.  Her HGB dropped and she went down to a 9.7 - heart rate, 02 sats and fevers have been everywhere.  She was on 02 for a couple of days and once the iron rx started to kick in she is managing 02 ok - but iron kills her stomach.

GI is increasing her seizure meds due to increase in seizures - seizures that are lasting a lot longer than normal for her.  We follow up in 4 weeks to see how adjustments are going.

Saw a new GI dr. last week too since the ones we have had for years are not doing anything for her.  Dr. Narwal is new one and he is well versed in Aero-digestive which is what she has needed all along but there has not been anyone here to access.  I was planning a trip to Cincinnati Childrens in Sep/Oct to see their team but that may not be necessary now with him here.  He is suggesting that we separate the G and the J and have one for each due to her motility and parastolosis (spelling?) - however she is too fragile right now for any procedures so we are seeing him again in 4 weeks.

Also just recultured yesterday to check for MRSA in airway again as she just finished another 21 day course of AB to treat it.  Should know by next week.

There are no plans for anyone in my family for the entire summer as we can not count on our nursing schedule for anything and Megan's  health isnt up to any outdoor or traveling activities.   WEhave two nurses going on vacation which means I am going to be doing days and nights from mid July through August 20 when other nurse returns.

Not doing real well with all of this as you can imagine.  It is really disheartening and depressing.  The quality of life around here is fair at best these days.