Tuesday, December 2, 2008

Nothing short of a mess right now

I thought I was scared enough in the NICU, or at our follow up appointments. Today's events may have topped that. I was putting Charli's ear drops in her ears this afternoon, first the left side, then the right (well..trying to anyway, because I can't seem to get them in her ears..even when she is cooperating) and she was falling alseep on her right side (it was nap time). She usually sleeps on her side (alternating) at naps, because of her plagiocephaly. I was about to leave the room when I noticed the chewy (bink) had fallen out of her mouth (more like she spit it out). I went to give it back to her when I saw her right arm was completely blue. Bluer than blue. I picked her up and frantically rushed around trying to find the phone to call 911 (the only thought in my head) and noticed the color coming back, so we rocked a bit and I massaged it and let her relax for a few minutes. After calling my mom I decided it was best to call the ped and let them know. What they told me when I called nearly made me lose it. Ok, I really did lose it. I called and explained the situation, and that I was concerned because it was her affected side after the stroke, to which the nurse promptly replied "she needs to come in so we can check and make sure there is no damage, her circulation is good, and that she doesn't have a clot and have another stroke." WHAT!!!!!!! I literally almost passed out. Probably a good time for me to start the blood pressure meds that I've been putting off at this point. I never even CONSIDERED for a minute she could have another stroke because of this. So now I'm frantically and hysterically calling my mother in law at work to come get us ( the brakes in our other car gave out yesterday so I can't drive it), and trying to have someone find Larry at work to tell him..but he's in a meeting. We get to the dr (our ped was off today) and see the PA whom we've never seen before...she comes in and does her exam and says she seems great, she has a strong pulse in that arm...was moving (to the best of her ability) but she would speak with the other 2 dr's on and see if they wanted to do tests. I'm thinking..yes, please..tests. I can't wonder and worry about this now! She comes in and says no tests. I'm thinking ..that's it? You put the fear of God in me and now you are sending us home with a feel better, she's so cute? So I call the neurologists office from the parking lot...thinking I'll speak with his nurse and tell her what happened and see what she thinks..and he gets on the phone. Which I guess was a good thing. I'm not entirely fond of him, but what he said made sense (he basically in different "neurologist" lingo backed up what the ped said, it was probably positional, she isn't at risk (as far as they know) for clots, "normal" children have issues like that where they lay on a limb and forget to move or don't move and lose circulation yadda yadda yadda. He said that he believes the pulmonary hemorrhage is what caused the stroke (this is the first time he's ever indicated what a possible cause was).So for once I'm grateful for speaking with him. But I'm still not at ease. I can't get that thought out of my head..and it's scaring me. I'm trying so hard to push it out of my mind..but it isn't working. It also brings me back to my intitial "why aren't we seeing a pulmonologist for follow up?" which I am going to call tomorrow and find one and make an appointment. I'll deal with the regular ped later regarding it. So my little monkey is fast asleep...and I'm a mess. I hope she feels better tomorrow. She seemed better this morning, but acted like she hasn't felt well all day again, especially tonight. Of course two trips to the dr in two days probably didn't help. Sigh. Ok, I think I'm going to go find some cookies, and call it a night. It certainly has been a long day.


Amanda said...

Oh my gosh Karen!! You deserve those cookies!!!

That is so scary, I can't even imagine what was going through your mind. I'm glad that the doctor eased your mind.

I hope you get into the pulmonologist asap! Hopefully they can give you a percentage of how likely it would be for Charli to have another stroke. We went to see a hematologist and the percentage that he gave us, really put me at ease. He said that the chance of Leah having another stroke is between 2%-3%. I hope you find similar answers!!

I'm hope your night gets better!

Carrie said...

Karen, definitely call the pulmonologist tomorrow. Just, if anything, to get another opinion and to ease your mind with answers for these questions!!

It sounds like such a scary day. I'm so sorry. Give Charli an extra hug from Hannah for me!

Ellen said...

Hi there, just found your blog. I'm sorry for the scare you had today.

My son, Max, also had a stroke at birth, and we visited a hematologist and pulmonologist just to make sure he was OK, so I agree, I would definitely see one. Max ended up having blood-clotting mutations but ultimately, the cause is thought to be oxygen deprivation at birth.

The first two years with Max were the hardest years of my life, I was terrified all the time something would happen to him, so I can relate to where you are. If you ever have any questions, please, feel free to ask.

Charli is super-adorable, and I love her name. Will add you to blog roll.