On monday and tuesday Lily's oxygen saturations were dropping into the eighties and during the night they would dip low enough that they put her on some oxygen. (In my head I still have the mentality that whats' the big deal, her says were way lower than that when we came in!) Regardless they did give her some oxygen to keep them above 87% after a while I was starting to wonder why her sats were dropping almost 10% since her operation. She had also started to require a lot more pain meds I believe it was over the weekend? ( every day just melts into the next I can't keep track anymore ) So those two things had me a little worried... I thought maybe she could have an infection that we aren't catching b/c she's given all this pain meds it'd mask a fever. I had them do some blood cultures to check for anything and they also checked for a UTI. Everything ended up coming back clear but her inflammatory response markers were elevated which they weren't concerned with.
One of her many art pieces! She did this all by herself!
Monday night she was having PVC's which is Pre Ventricular Contractions. I dont' know much about them but from what I somewhat understand its' when the ventricles contract slightly earlier than they're supposed to. Now obviously normal is 0 PVC's and I was noticing this number and alarm going on her machine with PVC 90 and above! So I got her nurse and asked what a PVC was and told her she had them. I asked if it was something a pace maker would pace if she did have one (as she has the leads but no generator) She said it would pace her... Lily looked content and all her vitals were normal she made the charge nurse aware of it and said Lily was still in a normal heart rhythm so it wasn't anything to worry about. I was starting to panic and almost had a meltdown I didn't think I'd sleep a wink that night and I'd just stare at the monitor all night long! However, I did end up falling asleep and ended up getting a nice sleep at that!
Lily painted a rainbow! I love this picture!
On tuesday afternoon the blood work came back with a low hemoglobin level and they decided to give her a blood transfusion. She had been looking seriously pale since the day before and they thought this would be the best option and might also be the reason for the drop in Oxygen sats. So waiver was signed and blood went in. (It makes me cringe the thought of someone else's blood going into her, I know it's tested etc. and I know she's had them before during surgeries but there's just something about it that I don't like.. but at the same time I'm grateful it is available for her b/c she does need it.. "it's in you to give. go give some blood if you can!") Within minutes it looked like her color was already getting better. Saturations did get a little bit better as well.
It's in you to give! ;)
Lily's fluid has continued to slow down while being NPO on Monday they started her on a steroid prednisone for 48 hours to help with the drainage. Its another nasty tasting medicine but Lily is getting really good at taking them regardless. I just tell her the truth "This doesn't taste good and you're not going to like it, but you can't spit it out. When we're done you can have something to drink and i'll brush your teeth to get the taste out of your mouth" she's done amazingly!!! She barely puts up a fight anymore for her am and pm pokes! Again I just tell her like it is. You're getting your poke and it's going to hurt but it hasn't' happened yet so there's no need to be upset. It'll be over really fast! and she doesn't even cry anymore! I have found through this that being totally honest with her about what's going to happen really helps calm her down.
I was talking to one of the cardiologists and he said sometimes these kids can drain fluid for like 2-3 months!! and some even go home witht he chest tubes in! eek I sooo do not want that to be us! Sometimes it just takes the body a bit more time to adjust to the new pressures as now her heart doesn't pump blood to her lungs he says so just moving around can get her circulation pumping so we're going to try and do more and more walking as much as she'll tolerate in hopes her heart will get used to it quicker and stop draining. The left side drained almost nothing yesterday so hopefully that tube can come out soon. they're going to have her try eating on wednesday or thursday and see how the drainage is going.
So yesterday morning her nurse said there was some gunk in her chest tube, you could see it looked like some clotted blood and fatty substance stuck in it so she kind of pinched it to try and get it moving down to the bulb. We just left it to worry about a bit later they were going to clean it out. In the meantime we went downstairs for an ultrasound of her neck to check for clots before they change her blood thinner. We went down in a mini wheelchair Lily loved it! Once we got in the room she put up an enormous fight b/c she hates echos and it's the same room. Then I noticed the bulb totally full of fluid! It hadn't been that full in like a week! I got really serious with Lily and had to get loud and in charge of her because the clip had come undone from her pj's which holds it up so it doesn't put weight on itself and get ripped out. They called down a nurse to drain it and she stayed to help while we did the ultrasound. She had to empty it again about 5 minutes later!!!!! Sooo this big long 4 inch plug had come out of the chest tubing and fluid was basically pouring out of her pleural cavity. Awesome. :( When we got back upstairs it again had to be emptied!!!! in about 15 mins they had drained 225 mL of fluid and about an hour later another 50 mL! That explains why the pain and the drop in her sats, as her right lung wouldn't have been able to expand properly! Instantly the saturations started to rise and they now are back up to over 95%! The blockage would have happened after her last chest x-ray because all looked clear at that time. It's apparent that it must have been blocked in the tubing for days but high enough in the tubing that it wasn't showing in the part that is out of her body. So now we are left wondering if the right side really has stopped draining or not.
Again sporting some crazy rat nest hair!
The doctors say she will be able to start eating on thursday to challenge the drains again. The left drain hasn't been outputting in days so hopefully no new drainage and they can at least get rid of that one!?
Wednesday night was bingo night at the beach and Lily had fun playing! She took all of our chips and she had to put them on the pictures. I was surprised she could follow along with what she was supposed to do. There were disney characters assigned to each number and she found them and put on her buttons/chips. I got a bingo so she got to pick out a prize. She stood on her chair so she could see all the barbies on top. There were a bunch of princesses and then I said and there's a doctor Barbie and she screamed "Doctor barbie!!!!" I had to laugh she's so cute. (she still likes drs?!) Once she got her prize she said I'm done now picked her up and started marching out. haha she got right down to business, got her prize and was on her way!
She still loves the healing garden and the water that is there. We blow bubbles and sing songs and throw money into the pool. She makes me pick out the money over and over and over again so she can throw it in hundreds of times!
If grandma comes with her then she gives her new coins to throw in, instead of picking out the old ones! haha
My sister was visiting and Lily was being silly, Rachel said you're full of beans!!! Lily's reply was "no I'm not, I'm full of ice chips and water!" ;) that kid is too smart!
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