Thankful for so much (hint hint-Our Mira!)

Thankful for so much (hint hint-Our Mira!)

Written Nov 22, 2011 10:57am by Amber Gannon Medina

Mirabelle had one of her best days yet yesterday! She had great color (nice and rosy), she was awake and content, and her numbers were good. It was so nice to see her in such a good mood. John got to spend the whole day with her and had a really nice day of daddy and daughter bonding. We are deducing that she has a good day because she was weaned from her sedative sufentanil and giving a hefty dose of methadone. So she was pretty happy and calm (of course she was-she was on a medication that addicts take to get off heroin, wowzers.....)

It is ashame that with such a good day yesterday, she will have a few not so fun procedures today and because of them will have to be on a few extra meds. 

Apparently, just this morning they found that her chest tube was leaking and because it was not in there correctly it did not have the proper suction (the chest tubes have a slight suction so that the fluids are drawn out of the chest into the tubes). So Mira will have to have extra sedation and they will restitch the tube into her chest. 

The chest tube procedure won't be as intense for her as the insertion of her new PICC line (peripherally inserted central catheter). Yesterday we discovered that the line that was inserted in her little pudgy leg had started leaking. We discovered this when her nurse went to turn her and all the medicine that was supposed to be going IN to her leg, poured out onto the bed. Because a lot of her meds were going through this line, we weren't quite sure how much of them had been actually going into her system-so we joked that Mira was trying to wean HERSELF off the medications, that little jokester! 

After an ultrasound they found the cause of the leaky line-a small blood clot right in said line. This sounded alarming to me (as I was thinking of blood clots that move to brains, or in her case go to her shunt, which would be very very bad). However, they assured me that she was already being treated for blood clots with a blood thinner and that would most likely keep the blood clot from doing any damage. 

After they discovered the blot clot, they decided that instead of fixing the line in her leg they would put in a PICC line. This is normally a pretty easy fast procedure, but because Mira is still on a lot of support and is fragile, it will be rough for her. She will have to be transported to a whole other floor and will have to be heavily sedated and if she gets very angry and obstinate like she normally does, might have to be paralyzed (just for the procedure). I am hoping she thinks of it as an adventure and not a scary procedure! 

Mira has been on a lot of medications for a very long time. She has also had the need for lines and tubes for a lot longer than they are meant to work. These things are just starting to give out. The medications are starting to not work so well (hence the methadone)-her sufentanil was not putting much of a dent into her fussy moods and her blood thinner was changed because they found the aforementioned clot. She has had numerous lines taken out and put back in and they are starting to get nervous about how long her heart lines have been in (there is a higher chance for infection the longer they are in). 

This all reminds me that Mira was supposed to be better by now. She was actually supposed to be home-eating turkey this Thursday (OK, maybe not actually eating turkey, but sitting with us while WE eat turkey) and keeping me up at night and maybe John would actually let me keep the heat at a decent level if Mira was here. You hear that Mira? If you come home, we might be able to set the heat at SEVENTY and I won't have to freeze anymore! I need you!!!

Even with all the frenzy today, yesterday gave me some hope. Mira looked like she was getting back to her old self, and her nurse and I started talking about what kind of things we can do to take care of her when she gets a little better. Its scary for me to start thinking about taking care of a very fragile baby, but also very excited and happy. I've already made the decision that I will do my very best (and then some) to keep Mira very healthy and strong-and that I will be successful in doing so. 

So there is light at the end of the tunnel!