Thursday, November 12, 2015

A little glitch - well. . .

Ugh just as I posted last week about our little man - we got a phone call from the international adoption clinic - - at 5:30 at night (never good.)

I held the phone stunned - he had some positive test results.

The prognosis was not good.

Of course I was on my way out the door for school conferences.  I cried the 30 minutes it took to drive, wiped my tears and pulled up my big girl panties ( BTW apparently devastating news for one means you have the best conferences of your life for the other four LOL!)

Children's Hospital was able to get us in the super clinic (for very medically needy kids) within 3 days (this usually takes weeks or months) AND with the most amazing DR within TWO days.  This quote explained why the rush (notice the date).

And that's when we hit our little glitch LOL - We went for what I thought was a meet and greet ( 1 1/2 hours from our home) and we ended up being admitted.  It was really the only way to get the blood work, spinal tap, abdominal ultrasound, EEG, MRI and consults with every specialty in the hospital.

I had all of $20 and no working credit card with me (yes mother of the year BUT I did run to Target to get Remy's cups that he can drink from and a lovey - leaving me with $6 LOL).

The rush for Remy was we needed to start massive doses of antibiotics but you can NOT do that until you know what you are working with.  In our case, what he tested positive for has basically been iradicated in children since the 1940's to 1960's.  Most people had never seen a case in real life, and those that had, had seen the ravages of this disease in adults as they went mad.  In the US, mom's are all tested and newborns are treated immediately - to see this in an almost 5 year old well, not good.  It's a progressive disease (not contagious) which attacks the bones, organs and brian.

I wavered between being REALLY, REALLY mad at China (his file clearly states he was negative - everyone agrees this is impossible.) and so glad we had expedited and rushed to bring him home.  Even in the four months since we had him, we started seeing a decline, not in his amazing personality, but he was losing the few abilities he had - like putting his shoes on, or taking his sunglasses off and putting them in the basket.  I started noticing him standing there - like he knew he was supposed to be doing something but not being able to recall.  More and more we saw him standing with his hands clasped together like a grandpa - it was becoming heartbreaking.

When your child who is almost 5 functions at 14-18 months and you start losing skills you scream at the unfairness.  This child already has so much to deal with, his albinism makes him legally blind, he has no language except echoing, and now we are going to lose that too?

So although the admission was not ideal, I was glad to see we at least had some direction,  We saw every specialty from hearing, opthomology to neuro and genetics.

AND we saw that just maybe God needed us in that building at that time.  We were admitted through the ER so Remy could have a spinal tap done.  The Dr who did that - he is adopting from Bulgaria.  I was able to talk to him, to guide him as to why Remy doesn't cry when he gets blood drawn and to answer questions.

A friend texted me that they were admitting her son, he ended up having even more devastating news than we received (on a different timeline), I was able to hug her neck as she received the MRI results, alone and away from home.

And I got to teach a lot of medical people, and lots of students.  My heart is teaching - and Remy, he has several diagnoses that most people will never see in their entire career.  From his nystagmus, and even albinism, to his echolalia, and blood results.

AND that speck - yes that is a Ladybug on our window - 8 floors up - in November.  Only God!!

And on the 3rd day, after finally placing his PICC line, we were able to start his major doses of antibiotics - not some expensive designer antibiotic - nope the cure is penicillin.  A $5 drug that even an orphanage could have provided.  This treatment will hopefully stop the destruction to his body, but what has been destroyed - - well, prayer is our best option.

So four long days we spent in the hospital (which really was nothing but for the being unprepared with 7 other kids at home LOL!) Our village stepped up, feeding our kids, loving on our family, and bringing me coffee.  I have often have a very hard time accepting help - I can do this myself, in my best 2 year old voice, has been my mantra.

And the lesson God kept telling me - Let them Bless you, LET THEM HELP.  Just as YOU went to China to do my work, they are doing my work by blessing your family.

That, my friends, was my lightbulb moment.  I recently heard the best quote -
"Who are you to tell ME what a Blessing is?" -God

THankfully, I was able to convince the hospital that I still had my Nursing license and there was no reason we couldn't do the round the clock IV antibiotics at home with a PICC (central line).  We are still processing all that has come about - what this entails for our sweet angel, and our family.

I do have an overwhelming sense of peace.  I think because all of this, along with the craziness of our family was the proverbial last straw.  Although the back that was broken was my need for control - and with that God said -finally!