sweet day with sarahjoy. She has been feeling good and keeping me busy (yay for needing to entertain her!) Thank goodness they have a nice playroom. And she of course does not have tons of energy so a few laps around the unit and 30 minutes in the playroom and she is ready for snuggles. We even took a nap together this afternoon. Right now she is cuddled up with her daddy. He is really into the basketball game on tv, she is more interested in her sock.
Sj is doing great. She is only connected to two things. Oxygen – and she will remain on that until we go home. The best medicine to lower her lung pressures (the really bad side effect that we are trying to avoid from having a VSD go uncorrected) is oxygen. So since we are in the hospital and it is easy to do, she is hooked up. but it is solely for medicinal purposes, she does not need it to function. Her other connection is an IV antibiotic that she gets twice a day. This is a super heavy hitting medicine that is hopefully attacking whatever is causing her fevers. Other than those two things, we are totally healthy!
The big question mark remains the fever. The last two days she has not had a fever during the day and then it starts to creep up around 7:00. they are still working with the theory that it is pneumonia causing it but that is not 100% certain. So there is a bit of a guessing game going on. Which has entered into the debate about when to head home. There is a school of thought that says we might go home on Tuesday, after the IV antibiotic is finished and continue an oral antibiotic. There is another school of thought that says because of everything that has gone on the last two weeks, she needs to stay under careful watch (in the hospital) until she is fever free.
To be honest, I can’t even really enter in to the conversation. On one hand I look at my child and see that she is seemingly feeling good and the fever is easily controlled with Tylenol and I want to go home. But there is another part of me that would be perfectly content staying in the hospital until we can say 100% that she is ready to go home. I will ask lots of questions and talk to the doctors but ultimately it will be their decision. And we will deal with whatever it is. I am certainly not counting on going home, that’s for sure!
I did a first tonight. I left her while she was still awake…not sure if I am proud of myself or horrified. She was so tired and would not settle down. Some of it could have been the baby on the other side of the curtain that would not stop crying or the constant suctioning of a child on the other side of us (gross)….so about 9:00 I kissed her goodbye. I had been there since 7:30 this morning and was exhausted. And since we have been there so LONG - sj is now perfectly comfortable in her little cubicle. I left her laying in her bed happily playing with her iv’s. the kid isn’t going to know what to do when she doesn’t having something stuck in her hands and up her nose! I called up to the nurse about an hour later and she said sarahjoy was still laying there calmly but not going to sleep. I don’t know what’s up with that – I was hoping if I got out of the way she would crash.
We will talk to some more doctors tomorrow. Thankfully many of them were home with their families for the weekend. Those guys work a ridiculous amount of hours – I feel like I need to send all of their wives a big bouquet. Maybe sj will not run a fever tonight – I left her with a low grade one but maybe, just maybe, it will go away. We could really use prayers for a clear, wise decision on when to go home.
We have been so overwhelmed with the generosity and care shown to us. it is amazing to me to watch people’s love in action. meals being delivered, phone calls, checks in the mail, gift cards given to us, visitors to the hospital. I want to make sure that you know how much that means to us. it is those acts of kindness that assure us that we are loved and cared for and we are not alone in this journey. I know that they take time and energy and money and it is oftentimes inconvenient. But please know that your kindness means so much to us. it is in times like these that actions truly speak louder than words.
Keep praying for our little princess. Hopefully some day soon I can announce that we’re outta here! And possibly even show my face somewhere other than a medical establishment!
(to mrs. whaley's class......this really stresses me out. do you guys read this blog and find all of my grammatical errors? you know i think about that when i am writing. wondering if i have a comma or an apostrophe in the wrong place. i know mrs. whaley has talked about my writing with you guys. but here is my best talent....acing the AP english test when i never read the books. i am so good at making things up in essays. maybe this summer at our sarahjoy party i can teach you my skills...until then, treasure your time with mrs. whaley. she is an AMAZING person. and when this sj drama is over, i am going to write about her. trust me, you have no idea what a gift you have in your teacher. AND...a special thank you to the person(s) who sent sj the little bible. i am blessed beyond words and have stored it away in her little box filled with things for when she gets older. i promise when i tell her story, she will know about mrs. whaley's english class. truly, thank you. )
|getting some good snuggles with daddy (and look how long my hair is getting!)|