Parents and Doctors who have gone through and seen what these heart babies go through told me that it would be a Roller coaster ride and it is. I feel like Fox is on one of those old woodden one's- The type that thrill seekers enjoy and it's rattling around joilting you left to right, bumpy, and sometimes when you finally get off the ride it leaves you buised. I feel like that kid who got tricked on going on the ride and is screaming to get off and can't wait to be on soild ground again. I think every parent would be that kid screaming to get off... but I'm still holding on.
Where do I begin ...really I should write my blogs more often because so much changes for him in just a few hours. Last time I posted I said he got another collasped lung and developed pneuomia.... literally 30 mins later they tell me his blood culture came back (they said it would take days but it already started to grow something 12 hours later!) he has a blood infection I can't remeber what it's called it sounds like cockeye haha.. no but really some of these medical terms are so funny.
His lung and blood infection looks like it will take a couple weeks to fully clear up. The other thing that came up the next morning when I came in honeslty pissed me off.. The damn night nurse, who I can't go without saying seemed a little off I don't know why, she was nice enough but just I felt something was amiss with her. Turns out the lady just left Fox basically all night on his right side...because he was sleeping so well.. ugh he always sleeps but he wont even really wake up if you just move him to turn him. But you HAVE to turn them if they have infectious fluid in their lungs because their lungs are sticky and if compressed for too long they collapse... So YES the stupid nurse gave my son a right lung collaspe. As if he didn't have enough on his plate. BUT wait I'm not finished I still have a little more rant left... The pharmacy messed up big time.. now I say big time because a mess up like that could of killed him.. luckily he was okay. They filled the doctors order for one of the antibiotics filled it with the WRONG antibiotic and labled it WRONG so it was labled as if it was the proper antibiotic. The nurse checked it.. it said what is was suppose to be and she gave it to them. Hours later they figure out it was the wrong medicine. THANK GOD it was just an antibiotic.. but still what if he was allergic to it? A women came in and explained the whole thing to me and told me there was going to be an investigation on the women who did it and how it happed and that she is on probation for now. This freaked me out!.. as she was telling me this my son was getting a blood transfusion and I made her check to make sure it was the right blood.. esp since he is 0-, She assured me it was a one in a million chance that this happend and that they will bring with inccident up at the safety meeting this week. That didn't make me feel better.
He isn't tollerating his feeds as well as he is .. but on this one I feel like they are overacting a bit I think he has an upset tummy. Other than that big news!!! they took him off the ventilator about an hour ago but we still have to wait 4 hours til they feed him he hasnt eaten since 12pm he must be starved! poor man. But they just want to make sure that he doesn't have to be re-intubated. As of when they kicked me out of the room he was under that cube box oxygen thing. I hope when they let us back in in 15 mins his still is doing good.. I get so nervous.
So that's most of the Fox updates.
I really enjoyed seen my family this weekend but it kills me when they are gone. I honestly feel like I can't handle this much more. I asked today about getting Fox transferred to CHEO but that seems to be a no go.. but I'll keep bugging.
Tripp and Everly-Rose need their mommy too... :( I feel like I'm choosing Fox over them sometimes, but I don't have choice he needs me more now then ever... and I just hope that the kids will understand that. And as Everly-Rose and Tripp go up and we talk about this time I hope they never feel like I left them. I hope they realize I want to be with them so badly. Every night I think about ways I could make it work better for everyone, but I just can't come up with one.
I also hope my husband realizes what a great dad he is and how much he is doing for this family and that me and Fox miss him.
5 more days til I see them again:(
I had three other kiddos when Annabelle was in the hospital for 10 months... I know EXACTLY how you feel regarding your other kids!
ReplyDeleteBut you are completely right: Fox needs you. I always wanted to punch people who told me I needed to go home more becaues they didn't understand. When you're baby is that sick, it's really hard to be elsewhere. I DID make myself go home sometimes, but it wasn't a lot. And the kids came to see me most weekends. it is not perfect, but the circumstances aren' perfect either!
I made sure my kiddos knew I loved them just as much as Annabelle, and that they knew if they were in the hospital, I wouldn't be leaving their side either.
It was a lot of adjusting coming home, but we are a family again, and my kids, while not perfect, were troopers.
I totally understand your frustration on nurses too. We were blessed with some AMAZING ones, but there were one or two I wanted to punch on occasion:-)
And the med mix-up IS scary!!
I can't believe what you are going through, I honestly cannot begin to imagine :'(
ReplyDeleteThis is a journey no new Mum should have to take...I will be on this journey soon too so I am thinking of you and your baby every step of the way.
Fox is a little miracle and so blessed to have you with him, it sounds like you have a really supportive family :).
Sending my thoughts and prayers to you and Fox.
Heidi.x