keep praying

So...Ridge is having some issues.  He's happy as can be, but the diapers seem to be headed down the wrong path again.  Spitting up has been basically zero, so that is good.  His hemoglobin is getting lower, but not terribly, and no drop from last night to this morning in hemoglobin.  The platelets are wacko....they will be in the 70s, then the 80s the next day then 90s...but last night they were 90k and this morning they were like 70 something k....last night Ridge decided he didn't want to sleep for very long bouts of time, so that was great.  However, when he was sleeping, his O2 levels were dipping down around 80-85.  90 or higher is what we want.   He was recovering on his own, but this happens sometimes when he is bleeding.  Hemoglobin counts do not really indicate a lot of bleeding going on, so some things are kind of confusing.

I spoke with the mother of a boy who has MLT as well.  He is doing well currently and she gave me some advice and suggested a med that I have referred to our resident to see what the GI team thinks of it.  I am interested in trying it since Ridge is on a decent size dose of Octreotide and since our goal is to NOT be on the steroids forever.

Ridge also had the hiccups yesterday.  I know, you're thinking, hiccups? who cares?  well...no, you aren't thinking that.  But you might be wondering why I would note this fact.  Well...Ridge hiccupped two or three bouts a day when I was pregnant with him.  He got hiccups all the time after he was born.  But after we got here and he got a diagnosis and was on meds, hiccupping stopped.  However...I noticed it's return the other day when things were going downhill.  One of the docs thinks it is a sign of the irritation from the blood.  But whatever it is, it's some sort of sign!  Not necessarily a good one, but something to notice...as is the low O2 levels...and the darker poop....etc.

So that is the update.  Pray that Ridge will start doing better and that the doctors have wisdom where to go from here and that my voice is heard bc I know I might have to get assertive about some things this week as far as Ridge's care is concerned...and not all of our doctors are as cooperative with me as others....and this is really not the week to have to change Ridge's course of treatment....but I am afraid that a change might be in order.

In other news, can I just say how stinking annoying it is when people ACT like they know what is going on with Ridge?  Not you, blog readers, but medical personnel.  I get that these people have been to school longer than I have and studied diseases and medicine and blah blah blah.  I have a respect for doctors.  But I do not have a respect for a doctor who has not even taken five minutes to read my son's chart and comes in and tries to tell ME what the deal is.  Um...I think I know better in THIS case.  Do you know how many doctors have worked w/ MLT?  I'd guess less than 20 in the world.  For SURE less than 20 hospitals have dealt with it knowingly.  So...it is not rude or arrogant to assume I know MORE about it than some of the doctors HERE.  Not more about it than our GI docs who treat Ridge daily...but possibly I know AS much.  And I have done my research.  I have now received a call from a mother who has a son with MLT, so I have a little more knowledge than I did yesterday.  All of this to say...when Ridge is dropping o2 in the night and the resident who I have never met comes in over an hour later when Ridge is awake and tells me "he's breathing fast"...well, I don't handle that well. No...he's breathing like normal for being AWAKE.  Thanks for checking him out when the problem isn't even OCCURRING.  Thanks for telling me that it is bc of his anemia.  Well, yes, he is "anemic" I guess, but do you even know WHY?  Have you read the chart?  Thanks also for telling me he might have to be transfused today. Well..no...bc his hemoglobin is above 8, and we don't transfuse till it's below 8.  Thanks for then saying, I guess to cover yourself, "well...we will have to look back at the trends and see."  no no no...I know this person has to be an intelligent, competent, even kind individual...but you have got to listen to the MOM sometimes.  I have been here three stinking months.  PLEASE do not act like you know what is going on with  my kid bc you just told me a few things that are NOT right and you also told me several things I am already aware of.  I just don't get it.  When we are finally released from here, I have a feeling it will be a battle of wills everytime we have to call an ambulance or anytime we happen to be at a different hospital than this one.  This is one of those cases where not EVERY doctor knows the best....or the most.  And I just wish people would admit it.  Or at least take five minutes to read Ridge's chart/file....I know you can read just about everything there is to find on MLT in five minutes.  So please, for everyone's sake....do it.

So that rant was brought to you by a protective momma who is somewhat sleep deprived and about to drink a LOT of coffee.  But that's how I feel today.  And I also feel like it's time for Ridge to be done with all of this.