Evening of Day 5- Long Day

Sometimes when things get quiet I will catch myself for literally a split second going, omg how did this happen? When did this happen? Last I knew I was pregnant and expecting this wonderfully healthy baby girl.... Then BAHM like a ton of bricks reality sets in. Sometimes I wish I didn't know almost everyone in this entire hospital. That I could walk through the lobby and not see at least 10 people who know us every single time. Don't get me wrong, I couldn't have made it this far without the amazing and supportive "family" we have made here. Everyone has truly embraced us and cares about Riley and our family as a whole. But they are all in love with Riley... Some days though you just wish you weren't that 'Family" some days you want to be the the one down the hall who is just here because "Sarah" had to have her appendix removed and then you go home and life goes on. To us, our world has stopped and everything around us outside "our world" continues. Some days you are to exhausted mentally and emotionally more so than even physically.

But one good thing I try to always remember is something a nurse told me in special care when Riley was just 4wks old. We were still in shock over everything that was happening. After all how could OUR BABY be sick. I kind of took it as an insult at first like she was belittling our situation, but the more time has past it is so true and it's probably the most helpful thing anyone has ever said to me during all this. She said, One thing about being around here is someone is ALWAYS having a worse day than you, someones child is ALWAYS sicker than your, and someone ALWAYS has it worse than you.... It is so true though! Right now, today as hard of a day as we had someone watched there child die in this hospital today, someone is having to make a choice that they know most likely will kill there child but it's there only hope, and someone found out there child will die within days or most likely not live through a surgery. Someone is ALWAYS worse, so I always am reminded of that when faced with a hard day. At least living in this world will keep you grounded and make you thankful for EVERY SINGLE DAY! That is something I am forever grateful for. We still have HOPE!

Riley looks much better now she is quite hyper and having a hard time sleeping actually and is busy over there giggling and dancing. Probably because Wil and Liam are sleeping over here. Liam has been screaming all night for me so I finally let him stay. They are nice and don't really say anything anymore to us since they know we don't do it often. All three of us sleeping in this tiny cot is fun... Anyway, once I got to PACU I found out they did put a special pressure dressing on her leg but that she wasn't able to sit up or move her legs for 4hrs... Yeah I looked at the lady and told she better go find me some drugs for her then and when she looked and found nothing ordered I then told her she better get out the soft restraints. She laughed but I was so not joking! It was a nightmare I literally had to stand next to her crib for 4hrs and lay on top of her and at times get slapped in the face and my hair pulled out when she was sick of it. Finally at 5pm we were able to let some of the pressure out and she was able to move around. She was such a mess though she wouldn't put weight on the leg they did it on but her other leg has her femoral line in it, her pulse ox on her foot and a peripheral IV in that foot. poor child.

So, now that this has been resolved we still have two big issues to handle. She still needs to get her IVIG and she needs to have her broviac replaced. Other things that will have to be addressed are what's going on with hematology and there plan once she's discharged. Also I was trying to get them to contact her geneticist/mito doc to get his blessing on everything that has been going on. Since we were gone all day and it is , of course, Friday! Everyone was gone for the day by the time we made it back to the floor around 4:30pm. And everyone knows nothing happens around here over the weekend not to mention they never sent her TPN orders to the pharmacy. So that means at the very best the earliest we can leave is Tuesday evening. Blah............. and that's if everything goes exactly right. I'm not counting on anything at the moment yet. This is ridiculously long and rambaly already and I'm exhausted so I'm going to sleep on my tiny little section of the cot. LOL I post more as soon as I know more!


Riley in PACU before they told me her legs had to stay flat too!

She is so swollen now! You can see the special

pressure dressing on her left thigh, it was actually pretty cool.

And of course being fiesty as usual and taking her EKG leads off to play with them.....