Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, May 11, 2013


That is such an odd word. It makes me think of acting angry in kind of a nicer way. That is how I feel.. felt.. It helps to write this all out so forgive me while I purge for a minute so that I can finally get some sleep. The clock on the computer reads 3:16 am, my brain won't shut down for the night. No amount of  numbing t.v. or reading or laying still with eyes closed is helping... So May has been oxygen dependant for about a month. She just can't seem to ditch the wiff. Don't get me wrong, lugging around the "half-child" oxygen tank is stellar for my muscles, but man I don't love trying to manage it. So our wonderful Pediatrician is trying to help in anyway possible and also rule out anything we can't immediately see. So May has had some x-rays and she also had an Echo last Friday. Best news ever that her heart looks awesome! The tricky news is that her lungs still looked sick a week ago. I guess I thought a week was all that she would need to get better... I think my exact words were, I bet they will reschedule her MRI if we can't get off the O's. Jinxed myself for sure... We have been doing two meds that are puffers, Flovent(sp?) along with her Albuterol. It worked and she has been able to maintain her above 90 sats. Since oxygen has only been off today I have been in to check the little girls at least 3 x's even risking waking them by placing my hand on their chests so that I can feel the movement of the their breaths. Here is why I am feeling the way I am. The NP called to do the pre MRI approval/admit info. As she was asking me about current medications I told her about Mays two breathing treatments. She asked what she needed them for and I told her about the month old sickness. I told her she was doing great now and that she was even off oxygen. She asked how long she had been off and I told her a day. Well apparently oxygen usage is considered symptomatic and they postponed her MRI yet AGAIN. Before I get nasty comments, hear me out. I am not angry, I am frustrated for these reasons. A. I had farmed out my kiddles based on their needs... Munchie is little and not in school, she was going to a friend who could have her for a good majority of the day without completely messing up other peoples schedules. The older two were going to a friends in the morning who could manage their before school needs and then Gator was going with another friend after kindergarten who could manage his halter monitor, because I already signed a paper and have given her permission to stand in for me when I can't be there. Oh that reminds me I need to call and cancel with her. B. I declined help to others... activities.... and other silly things C. I planned a meal that I could easily execute for that night.(Dumb I know) Maybe the biggest thing is D. My worry about my baby grows because I feel out of control of the situation. I don't have a clear idea of what we are up against. It could be very minimal. It could be really nothing at all. But I can't get the relief of understanding the situation until we have the MRI. The anticipation is killing me. Now you could probably argue that I should not or try not to worry about what I cannot control... But yeah, you are talking to a momma about one of her babies. Prolly not gonna happen. With A,B,C and D aside I really want my little May to be safe. Having the MRI is not a safe thing right now. Or before. Cause remember how this isn't the first time we have rescheduled this darn thing. K- just checking in case you forgot. Maybe I am missing the bigger picture. Maybe this is the answer to my petitions to Father in Heaven to watch over her, to keep her well, to help me, make good decisions for her. I should not begrudge a gift of more snuggle time with my baby. So because I am imperfect (it would be so much easier to be perfect) my frustration was there. I guess I will just have to let it go and try not to worry (ha). I am reading a book that is helping... I need to reread the last chapter about how I am suppose to be handling this with a little more grace and patience. We have rescheduled the MRI for the 24th of this month... With a nice little visit back up to the Hotel on the hill (PCMC) with neuro on the 28th. I won't hold my breath. I also won't be frustrated any more. Okay... Now I can go to bed. I do have a few happier posts to post... TOMORROW


berrymom said...

Oh man alive! I am so sorry. We have been wondering how things were going. We pray for her (and your family) almost every night. We love you bunches and bunches.

likeschocolate said...

I totally feel for you! I would be frustrated too! So don't beat yourself up too much. Your human. Sending prayers your way!