The day before Same day surgery called and did all the pre paper work. Got a chuckle from some of the questions, havent been asked some of those in a very long time. The lady also asked me to list every med Mariska has been on for the past 30 days. Told her she was going to make me bust out the book. She laughed and said to bring it with us when we come in. They liked the printed med list we bought in with us. Love the small things that make everyone life better!
My mom *Grandma B* got to come with Misky and I for this cath. Helps having someone there with you. Thanks mom for all the help! <3 I never sleep well on nights before we walk into PCMC ever that night was no different. That trip we had with rejection made sure I would never again. Maybe with time I hope.
Mariska was on the grumpy side that morning, Next time we take her to the lab we'll give her something maybe after she picks a toy. She wasnt to happy with me leaving her there. Breaks your heart to hear your child crying after you and having to keep walking.
Her heart looks awesome and no signs of rejection!! Takes such a load off my shoulders when we get a good report.
No rejection also ment we could stop IVIG early!! cant say how happy I am about that. This months was going to happen at home. Which I was feeling uneasy about. Kind of like keeping the pain at the hospital and not having it come to the house.
Her docs didnt like the risk of doing IVIG again this month after some kids have had bad reactions to it. Mostly for the A blooded kids. *which she is!* there are to many A antibodies plasma in the mix wish can attack their own blood... shutting down other organs! yeah not want we want at all. Pretty scary to hear its happened to others. She has had a really bad head ache about two days after each treatment. Last one took her almost a month to get back to her self. Think shes still feeling pretty crummy from it still.
Since her heart cath looked good and her echo looked the same also she got to come down on her steroids again. .4mls onces a day now. Cant wait until shes off this drug, and she can be back to her normal self.
Cant tell if its her meds that make her feel icky or if its something else like not being able to be around people being the social butterfly she is. She just hasnt been as happy. Kind of moody and unwilling to eat much. Sam says shes eating fine. Think I got used to her eating like a teenager and its messed up how much I think she should eat. Making things fun and changing it up so she'll eat it has been tricky. Today she did eat squash and a bunch of noodles. And didnt throw up!
She is still throwing up now and then. Mostly in the evenings after meds. some of them just are just plain nasty. I want my happy willing to take her meds baby back. Anyone mind sending that back?
Tomorrow she has clinic. Also a bunch of labs. They forgot to get some durning her cath..... ... ... Yeah I know. I beg for finger pokes. Heart momma's anyone else not liking the new lab drawing team?.. They stress me out. I'll stop there, lol you all know how I feel about that place. Just has to be done.
Biopsy 7.. I lost count. - We made it home after a very busy three days in Palo Alto. Owen's biopsy went perfectly and he received another zero rejection score.. yay! His pressure...
1 day ago