Tuesday, March 10, 2009

Long but informative...

Sam is still sick... I understand that people don't get it nor do I expect people to get it but I'd like to try and explain if I can. Sam is severely hypotonic. This doesn't just mean that he's weak on the outside his muscles controlling his internal organs are weak as well. This is why he is so prone to respiratory illness. What does this mean... It means that some one else's cold that may just be a sniffle can turn into a full blown pneumonia for Sam. Why??? Because his lungs do not function normally at baseline and when he is over producing mucus when he is ill his lungs become even more compromised... Which means that he cannot expel mucus and breathe to the same capacity that typical functioning people do... which means that it takes him forever to get better because the longer bacteria is able to sit and grow in his lungs the more it multiplies and the worse he gets.

Now of course there are the antibiotics... A whole other issue... The docs cannot put Sam on typical antibiotics because his infections are way way too strong for them so he has to go on antibiotics that would knock anyone for a loop. Cipro... about one of the worst drugs for the rest of your system is what Sam is on at the moment. He's been on it for almost 2 weeks and he got sick again Sunday night on then again. His system is even more compromised because now because his entire GI tract is fucked up... He may have C.diff again which is a really nasty and painful bug that can kill someone like Sam and it takes FOREVER to get rid of it. I am actually pretty sure he has it at the moment as we spent most of the day in the ER yesterday getting a full work up. In the midst of the work up Sam's x-rays showed that his lungs look like crap still so he is on another strong and nasty antibiotic on top of the Cipro and if all of his cultures come back to say C.Diff he's going to be placed on yet another antibiotic, all of which make Sam weak and feel like complete garbage and unable to sleep and tolerate his feedings which then compromise his system even more which makes it almost impossible for him to get better. In addition to the C.Diff and being on all of these antibiotics which caused the C.diff make Sam have chronic diarrhea which in turn sets his poor tushy on fire which makes him even more uncomfortable and miserable. FUN!!!

I am not blaming this illness on anyone by any means. I am pretty sure that the reason why he got sick in the first place is because we got the go ahead to try experimenting with swallowing certain tastes because he has been well for so long and his swallowing seemed to be improving. So I think this all started with trace aspiration of tastes which of course compromised his immune system and set him up to catch anything and everything under the sun. When you aspirate even a small amount your airway begins to hypersecrete (is that even a word?)and Sam cannot handle it as I mentioned above he cannot expel the secretions like we can.

I am thankful that most of our friends and family understand and don't take it personally when we are adamant about hand washing and shoes off and of course being unable to go to most get togethers and what not. Even those that cannot fully understand at least respect our rules and decisions regarding Sam. So thank you.

As a side note the ER experience yesterday while tremendously exhausting was more pleasant than not. I came in there like a bat out of hell yelling and cursing at everyone and anyone in my way... I have just about had it at this point with everything going on with Sam and other crazy stupid things going on in my life. So when the stupid recepcionist told me I had to sign in and pointed to a place where there was no clip board to sign in on I got annoyed... I told her to just buzz me into triage anyway my baby has special needs is respiratorily compromised and has been retching and throwing mucus plugs all day and he needs to be attended to immediately. So the stupid cow says well you have to sign in so I said... ready for this one... so in my psycho yell I said open the fucking door you fuckwit your going to be responsible for killing my baby, he can turn blue at any moment asshole. I know I'm such a lady ;). Then the resident came running around and opened the door and of course at that point Sam started retching and choking and guess what??? Some other asshole tech in a condisending tone goes you have to leave the stoller in the waiting room. I just ignored him and pushed him out of my way as we were trying to get Sam suctioned and stable and onto a pulse O2 machine. Lucky for Sam the resident and nurse at hand were very dilligent and competent in taking Sam right away. They saw how crazed I was and could even have treated me with an attitude right back but they were pretty calm, caring and concerned and they did what they had to do immediately for Sam.

All tests and cultures were taken right away which is always helpful and most of the waiting was just seeing what some of the labs looked like before sending us home. However... they wanted a stool sample and since we had been unable to feed Sam for some time because he could not tolerate feeds I knew he was not going to poop on his own. We got into the ER at 11:30ish and literally sat around until 4 waiting for Sam to poop. I kept begging for them to just give him a suppository and they wouldn't. In the meantime Scott kept calling the ER docs to find out what was going on. I laughed and told them they were lucky he wasn't here because he is a thousand times worse than I am. They chuckled, I'm exhausted with preggo body aches and pains and starving and Sam is getting really agitated and starting to throw my nerves into tornado mode.

At 4:30 Scott showed up at the hospital and it was like the clouds opened up and the light shown through. He wanted to know why we weren't getting discharged yet and I told him we were waiting for Sam to poop and explained that he probably wouldn't and he would need a suppository yadda yadda yadda. Scott goes give me 30 seconds. He walks over to the resident calls her by her first name and says listen I understand your concern but my kid is not going to poop now unless you give him a suppository. She said she felt uncomfotable doing that blah blah blah so Scott said look eventually I am going to drive you so crazy that you're going to end up giving it to him anyway just to get rid of me so you might as well just do it now. With that in less than 2 minutes the suppository was given, Sam pooped, sample, taken, discharge summary written and signed and we were on our way home. Go Scooter!!! My knight in shinning armour. And yes we rent Scott out by the hour to anyone that requires a ball buster.


Anonymous said...

I cannot begin to tell you how much you inspire me. You are amazing, smart and a BITCH!! Love it!! Keep kicking ass! I hope that Sam feels better soon, and they do not have to give him any more antibiotics. As always, you are in my thoughts!!

Anonymous said...

bitch? bitch?
oh, she gets that from grandma nettie

love mom

Lainie said...

You guys are really amazing! Sam is a very lucky little man! Kisses to all of you!

Anonymous said...

You know what....
while reading your post
it came to my mind
I do not think that Sam could have made all his advances
unless he had such a bitch - sweet caring mother and such a gentle father...no way

Cassondra's_Palace said...

Hold the fort...preggo body aches? I am CMing you...where the heck have I been?