Wednesday, March 16, 2011

New Jersey Results

We received some of Brendan's lab results in the mail from New Jersey yesterday.  Several questions were answered, which is great.  The lab results also brought up other health issues I was not even aware of.  Brendan's glucose level is very low so we will be following up on that.  I am still trying to process everything else.  Sorry if I am being vague but I am waiting for some guidance from various doctors.

Brendan also had another visit yesterday with his hematologist.  His iron levels are up but the iron stores and saturation percentage are still down.  Once again, he was a trooper while he received another iron infusion.  We decided to wait six weeks before the next infusion because we are hopeful for a positive Elecare trial.  It has taken quite some time and effort to locate the elemental formula but it should arrive this week.  If Brendan can take in a large amount of Elecare daily, it may boost his iron levels enough to avoid further infusions.  We'll have to wait and see.

Wait and see.  Wait and see.  Anyone who knows me well understands that I am not a wait and see kind of gal.  If I see a problem, I try to fix it immediately.  Sometimes, life doesn't work that way though.  FPIES is definitely teaching me patience.  The last 24 hours have been a little rough and my mind is all over the place.  I try to keep things positive so on that note, I'll end my blog post for now and count my blessings.  With everything going on in the world right now, I am thankful for the gift of life and even appreciative of the trials that go along with it.

Tuesday, March 1, 2011

Our New Jersey Experience

Whew!  We survived our whirlwind of a trip to New Jersey.  Although I am operating on five hours of sleep since Sunday, I have to say it was definitely worth it.  Dr. J was a very kind and compassionate doctor.  She ordered several blood tests for Brendan and we will anxiously await the results.  Dr. J also mentioned her concern over the fact that Brendan is still breastfed.  From a nutrition standpoint, he is not getting enough protein and vitamins from breast milk alone so it is time to reintroduce the Elecare.  We are keeping our fingers crossed that Brendan will tolerate the elemental formula and drink it from a cup.  If we are not successful with the cup, we will need to revisit the idea of a feeding tube.  I have to admit her recommendation was very hard to hear but I know it is time.  This has been an emotional rollercoaster to say the least but now we are taking that leap of faith.  I don't quite know how to express the fear and mourning I will go through during the weaning process.  Brendan and I will be saying goodbye to a very unique breastfeeding bond.  Our ties run deeper than just breastfeeding mother and child.  I have sustained him thus far and it is difficult to let go.  Breastfeeding has been the only source of comfort for the both of us during those late night food reactions, iv infusions, and countless other medical procedures.  My mind tells me this is the best thing but my heart feels otherwise.  So, now I have put my feelings and fears out there and it's time to have faith and let go. 

Lastly, a heartfelt thanks to my family and friends for all the support and encouragement during the last few days.  Uncle Mitch, thank you for caring for my family in my absence.  A special thanks to my traveling companion...we couldn't have done it without you.