Crypto what?

(I have been writing this blog over several days, so forgive me if I jump around a bit. )This will be a long post so for those of you who only check for the pictures, you might want to skip on ahead, but I personally would like to remember this long journey we have been on over the last 8, almost 9 weeks........



Yes we have yet another venture into the wonderful world of medicine for this little family. And not a happy one I might add. As usual, Elem has continued to have diarrhea every single day, about 3-5 times on average, despite the original full dose of antibiotics prescribed for Giardia he has completed. Which to me, means he still has the giardia. So I did what any mother would do, call the doctor -AGAIN. I call, they tell me a nurse will call me back, no one calls back. I call again, they tell me a nurse will call me back, no one calls back. I call again at 5:50pm (10 minutes before they close) and the nurse finally calls me back one minute later. She tells me that 2 requests for approval of refill on antibiotic has been sent, but that the doc has not responded yet. And she tells me that my regular doctor is out that day and she is waiting on this other one. So I hang up, thinking I will get an answer the following morning and I was not happy about that. THEN, at 5:59pm she calls me back and tells me that she walked back to the back and specifically asked the doctor if he can call in a prescription for a refill. Of course he does and I am like thank goodness! I was getting so angry, just one more thing to add to my list of insane complaints about this clinic and the treatment my son and seth and I have received. I quickly headed to pick up the prescription and give Elem his first dose, and was on my way.

I headed off to work the following day, with a jam packed schedule as usual, and Poppa picked Elem up from school early. I get a phone call from Ali-my sister in law, and she says, so I guess you heard about Elem right? Immediatley I am scared to death and my heart literally sunk into my stomach not knowing if he fell or got hurt or was in a wreck or something! And she was like, yeah, Phyllis, (my mother in law) called her friend again at the clinic to see if she could get Cecilia an appointment to get checked out (because she has diarrhea bad)-and while on the phone they were discussing Elem, and the nurse told Phyllis that she just couldnt believe that Elem had "Crypto"-commonly the short term for Cryptosporidiosis. I sat there in shock and I just started bawling right there at my desk at work. It was awful. I just can not believe that I have been told so many different things so many times and now this. My kid does not even have Giardia-he has this. And it is even rarer than Giardia. And there are not that many outbreaks of it!

Now what is it you might ask???

Crypto

Its grose and just plain dangerous to me is what it is! My little boy literally eats food and then it runs right through his stomach. And this water spread, chlorinie resistant parasite can be very dangerous for infants! So I continued with that refill on the antibiotic, which is called Alinia. Elem takes it for 5 days and completes it. One day out of those 5 I had high hopes and he had a regular poop! Wahoo, I thought, but it was just a fluke. He has continued to have 5-6 diarrhea every day no matter what! And all after 2 rounds of medicine. So at this point, I am done, and have no idea what to do. So I get ahold of my friend Jaime who is a pediatric nurse at Children's Hospital here in Little rock, and she gives me her thoughts on the whole thing, and is like go with your gut. So we were going to go to the ER but we decided to go ahead and go to the GPC clinic which is at Children's Hospital but still a regular pediatrician. We meet with the doc, and he does exactly what we thought he would do, says there is really nothing he can prescribe until he gets another stool sample and runs it to the lab to see if yet another infection or parasite has set in on my little sick baby boy. He also tells me to give him tylenol for the pain of the stomach cramps and mylanta to try and ease the gas bubbles and hopefully lighten up the cramping as well.

Of course this answer was not good enough for me. I continued to ask questions and beg for something else, and even asked if they would do more for him if we went to the ER. He was very nice and let me know it was our choice, but honestly without a stool sample they really cant start treating for random things. They want to treat for what he really has and make sure they arent treating for something he doesnt even have. I know he is right, and as I told him, it was just not the answer I was looking for. I wanted a quick fix, and I wanted some thing to relax his stomach and stop the diarrhea -I wanted a miracle drug basically! :) No such luck, and they sent us on our way with the container to gather the stool sample and went home.

Once we got home we just spent time with Elem, ate dinner, and chilled for a bit. Not too much longer before we were about to put Elem to be, he of course had diarrhea and I had to get that stool sample. WHich is so awful. I get grossed out thinking about it. And as I said before I dont even have that weak of a stomach. By this time it is 9pm and I am putting Elem to bed right after I get it. Seth, being the awesome dad that he is, grabs the sample and take it to the hospital at 9:30 at night!! In hopes to get it in there and get the tests going. On a side note, he calls me and tells me that the GPC clinic closed at 9pm-but that he called and he could see the lady answer inside, and he told her he was standing outside with a stool sample and they let him drop it off! Very much a blessing right there! :) haha.

Fr now we are playing the waiting game and trying to ease Elem's pain and discomfort as much as possible. He goes in spurts from awful pain, obviously stomach cramps and just plain ole sore booty, to being completely happy and forgetting he is hurting. For those good times we are thankful, because when it is bad, it is really bad. Last night I got up with him at 12:30, 2:30, 6, and 7 and all but once he had a full diaper. And now his bottom is so raw it brings me to tears. He wants his diaper off when he can, ad I let him air it out as much as possible. Currently he is taking a nap and is at some peace for a moment. I will be calling the hospital tomorrow to try and get at least some results, and based on the results, we will most likely be getting a referral from our regular doc (who we will be changing after this episode is over) to an infectious disease specialist. It is such a weird process because I dont know what to do! Thank you Jaime for your advice and I will keep you posted once we find something out. Prayers are welcomed and appreciated, and as soon as I get the results I will post them. I am praying that he doe not have anything else on top of the crypto and if he does, it is something they hurry up and catch so we can begin treatment. I am amazed and happy he has never gotten too dehydrated and bless his heart, I think he has accepted this is how he feels all the time. And I hate that for him. There is nothing worse than seeing your child in pain, and knowing there is absolutely nothing you can do for him. But just put your trust in the doctors to tel you what is wrong.

Although this is a rough time for us, Elem always seems to put a smile on my face when he is feeling good. My strong little soldier toughing it out:
Picking flowers (in our flower bed I might add)


so cute doin it though-so I just let him pick away.


thinking about the parasite I think...


hi mommy, i ready to go in.


Again I know that was long, but this has been one long journey and it is not over yet! Oh and 8.8.08 marked Elem at 15 months old! So I will be posting those milestones ASAP. Those are my favorite thing to do!