Update and yucky tube

Thanks to all for their support while we ride this rollercoaster.  We continue to struggle with Maggie's sleep and I think this is having a domino effect on most of the other areas of our lives.  We've done quite a bit of consulting with various professionals at the hospital about sleep and will try to make some progress over the next few weeks.  It has been a tough week and the last two days were the toughest.

Thursday, we went to the clinic for low-doses of chemo and it was an eventful visit.  All told, we were there for 5+ hours because some of Maggie's counts are acting up (thankfully, not her blood counts--they're fine).  Her potassium was quite low despite the supplement that we've been giving her (due to her poor appetite and fairly frequent diarrhea).  And, her liver enzymes are high (most likely a result of all of the meds she's on).  We are dealing with these issues and they will be fine in time.  The biggest issue, however, ended up being Maggie's lack of appetite and weight.  Maggie has gone from the 90th percentile for weight when we started treatment to the 3rd, as of yesterday.  She doesn't have enough of an appetite to make good gains, and when she starts to eat well, her treatment intensifies (steroids, or chemo) and it ruins our progress.   The result:  we had delayed and tried to prevent it, but today Maggie had a procedure to insert a feeding tube (NG).  The tube goes in her nose and down her throat and will feed her for 12 hour stretches overnight.  It is secured to her face with tape, and for parts of her days and all of her nights, she'll have restraints on her arms that prevent her from being able to bend her elbows--so she doesn't yank it out.  

You can imagine that this was an unpleasant procedure and an unwanted and traumatic step for us to accept.  I will save most of our thoughts for another time, but our hope is that it helps with a number of her problems--weight, appetite, sleep, physical development.....  Along with it comes a host of regrets and disappointments on our part.  But we'll get used to it, and it is temporary (maybe a month, maybe less, maybe more).  The ultimate goal is to gain several pounds and improve some of her nutritional measures.

So far, Maggie is handling it fairly well.  For much of the day, she seems to have forgotten that it is there.  But, if she accidently touches it or sees it in the mirror, she has had a pretty furious cry as she realizes that it is there.  She'll adjust in time, but it is hard.  

As of 9:45 we're still waiting for the home care nurse to come and teach us how to use it and to deliver tonight's nourishment.  We were asked at 7 or so if we'd be okay waiting for tomorrow to get it started as they have had a couple of difficult patients.  Nope, we're not okay with that.  We didn't agree to have it put in just to wait a day and a half to get any benefit!  It was one of those times when we felt the need as parents to advocate for our child.  They are supposed to come between 10 and 10:30 tonight, we hope.

Please continue to pray for Maggie, our family, sleep, patience, quick adjustment to this change, and for much needed results.  We pray that this, though difficult, will be the catalyst for a lot of good improvements.