Okay...so let me start with the past few nights. Since Arianna had her bronchoscopy on Tuesday I've decided to monitor her sats more closely, since the hospital pulse ox said she was at 97 while sleeping. (and coming off anesthesia to add to that). I checked her sats during meal times and she has been at 95-97, which is great! We haven't seen numbers like that since November.
Then on Wednesday night she was satting at 90 while sleeping, dipping into the 80's 3-4 times. I had the oxygen ready to put on her but I decided I would hold off and she what she did. By the time I went to bed at midnight she went 30 minutes without dipping into the 80's. Since I still don't have a number that they (doctors) what her to stay at, I've decided I will only put on the oxygen if she goes under 90. Hopefully the pulmonologist will give me a more concreate number to start keeping her at. So anyways...then last night she was sleeping and satting between 90-94, depending on her position. During a 2 hour period she desatted as low as 86, about 8 times, but quickly rebounded back to 90. I almost put the oxygen on last night but since she kept rebounding I figured I wouldn't. (Wouldn't it be nice if someone would just tell me when I need to put the O2 on her, instead of me just trying to figure it out myself)
She wakes up fine this morning, a little earlier than usual, so I give her a bottle and she drinks 4 ounces and goes back to bed for another hour. We wake up like normal and begin our routine. She still isn't eating very well but I decide to offer her french toast with syrup, and to my surprise she ate the syrup and maybe two bites of french toast. (This is a huge step for her) Then at noon she was ready for a nap, which was a little earlier than normal, but who's complaining! I plugged her up to the pulse ox and she was satting between 92-94. She wakes up from her 2 1/2 hour nap, which I don't really understand why she took such a long nap cause she was only up for 4 hours, but her pulse ox was okay so I didn't think twice about it.
Okay, so she wakes from her nap, eats a HUGE lunch and begins to run around the house playing. I go in my room to get dressed, cause we just got done taking a shower and there she is standing next to me and I notice her lips are blue. Not just slightly blue....but blue. I look at her fingers and they're blue too! I quickly try to plug her up to the pulse ox to get a reading, which is almost impossible to do when she is awake, and she it was a bad reading at 92, so I know she was at least above that. This lasted about 1 minute then her color came back. So here I am thinking.....WHAT is that all about? WHY is thing happening? And all the feelings of why I HATE being a heart mom started coming to mind. I hate the fact that my daughter was born with a CHD. I hate the fact that I know what to medically look for when this happens. I hate the fact that NO ONE can tell me whats wrong with her...and is there really anything wrong with her. I may not be making sense right now, but this is all that is going through my head and I feel better when I get it out.
I still haven't heard from the pulmo or cardiologist about the CT's and bronch results but I'll be mentioning this blue spell to them when we talk next week. I'm not about to take her into the ER since we are having a measles outbreak going on and Arianna cannot be vaccinated against that due to her immune system. So I'll just keep an extra eye on her...not like I don't already.
On another note...please keep our heart buddy Elijah in your prayers. He has been giving his mommy and daddy quite the scare lately. He is scheduled for his next open-heart surgery next week.
**I don't have time to proof this so hopefully it all makes sense.**
10 comments:
I know exactly what you mean about the O2 sats! Nevaeh has been all over the place over the past couple of days, anywhere from 68 all the way up to 94%! Go figure! The whole trial & error thing isn't fun with the oxygen; ben there, done that! Just know you're doing exactly what you should be! You're being a wonderful mommy! Take care!
You are making perfect sense...I am so sorry that you are having the heart mama blues...that is what one of my friend's told me about and how it hits right as our babies are turning Arianna's age...especially when our baby is not considered "fixed".
You are an incredible mommy who loves that sweet girl very much...and you are right, it is down right unfair that we have had to enter this CHD world...but you know something, there is a reason...I have yet to figure out what that reason is, but there is a reason we were chosen to be the mom's of a CHD baby.
If you need anything at all...someone to vent to, to cry to or just say hi to, let me know...I am here. Please try to take a nap when you have a chance...you sound exhausted.
Lots of big hugs to you and Arianna!
Love,
Samantha
P.S. that really stinks about the measles outbreak...this is what makes me so mad about people who "choose" to not vaccinate their healthy kids, when the kids who are not able to get vaccinated b/c of their health (like Arianna) then stand the risk of getting infected. I totally understand why you do not want to bring your sweet girl near the hospital.
Oh Vanessa,
I sure wish you get some answers to all those questions soon. That must be so darn frustrating! Can you even get any sleep yourself when you're having to monitor Arianna so closely?? I know Bilal's lips turn an awful shade of purple when he cries, because he holds his breath (just to freak me out, hah!), but if Arianna wasn't upset at the time, I wonder why? FYI, I have quit dressing Bilal in certain colors because it makes his lips look blue and reminds me of how he looked pre-surgery. (Talk about that for a freaky mom!) I hope your follow up with the pulmonologist resolves some issues.
Mina--that is so funny about the not dressing your kiddo in certain colors b/c they make him look blue...I do that SAME thing...poor Micah never gets to wear any shade of blue (except for baby blue). No one sees it like I do...just had to share :)
Oh no-what a scary day!! I understand your frustration. Blueness stinks!! I stare at Colin all the time-if he looks even a little pale I freak out!! Hate oximeters!! Hang in there.
Melanie
Hey Vanessa...
my advice...just trust your instincts! You have never failed Arianna yet...and you know more than any 12 year trained doc! I know it's frustrating....and my prayer is that you find joy in Arianna in the next few days to ward off the blues! It's totally normal to feel overwhelmed...and totally expected! You are so on top of her care...I am always amazed.
Sending lots of hugs!
Blueberries are no fun at all!!!
Girl...the ups and downs are why I've just been keeping the canula up Isaac's nose! I checked it every morning after I've bathed him (because I take the O2 off for the bath)...but, when he dips too often, I just stick it right back up his little nose.
Isaac's always been a blueberry though...and ALWAYS holds his breath. stinkers!
Hope you feel better tomorrow...today just seems to be a stinky day all around (for everyone!)
hugs to you all,
Kathy
I'm sorry you're feeling overwhelmed and frustrated. Unfortunately that comes with the territory and we all experience it from time to time. I hope you get the answers you're looking for soon and that you feel a bit better today. At the very least you know you have lots of company in this CHD world.
Thank you ladies! You guys always make me feel better.
Mina - I have never bought Arianna a blue outfit until Friday. What was I thinking. I just couldn't pass it up cause it was so darn cute!
I remember the first time I put a blue footy pajama on her before surgery (someone else bought it for me) I couldn't believe how blue she looked so I got rid of the outfit right away.
Thanks again ladies. I'm feeling better. I've been monitoring her and she is still low at night but I'm hoping tomorrow to talk to the pulmo and get answers.
Vanessa
Oh Vanessa! I'm so sorry you are feeling so blue. Ha ha, no pun intended! These feelings are so normal and you actually DO make perfect sense! It just stinks that we heart mamas have all of this extra baggage to worry about. Nothing is "little" with our babies and there are a lot of things that just can't be explained.
We had Elijah dressed in blue and it just didn't coordinate well with his very blue lips so I think I'll put red on him today! Maybe it will pull whatever red there is left in his lips out!
I'm sending you lots of love and hope that you are feeling a bit better. Just remember that there is a reason you were chosen to be Arianna's mommy, and it's because YOU are the most awesome mama that could ever care for that sweet little girl. YOU were chosen out of all the other moms in the entire world! You do such a good job of caring for her.
Take care and give her some loves for me. xoxoxo
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