Yesterday I dropped Melanie off at the airport. It was so hard on both Melanie and I for her to go but the kids needed her at home and Olivia needed me. It was so hard for Melanie especially because she left her sweet Olivia. Even though Olivia hasn't had much time with Melanie these past 2 months you wouldn't know it. Olivia loves her mommy so much and it was like they had never been apart. Even though this whole thing sucks I was so excited to see my wife being the awesome mommy she is.
Upon returning to chop, they had moved Olivia to the step down unit. They were about to give her a strong sedative but olivia's heroic father showed up, pick up her little butt and calmed her down. Unfortunately, we keep getting a shared room. I hope they enjoy my snoring as much as Nathan cub scout pack does. Olivia must like my snoring because she gets so much sleep at night to the soothing sounds of daddy.
The chylothorax is pretty much gone. They pulled her chest tube drain this morning. She has tremendously decreased the amount of fluid that was coming out of it.
Last night I was so stressed and tired front an entire day and night taking care of her by myself. She would not drink her special nonfat formula for anything. She would thrash her head and lash her tongue at the bottle she hated the stuff. I managed to trick her into an ounce her or there. One time I got her to drink 2oz while asleep. I was at my wits end with her eating this stuff, almost to the point of crying. It's just so hard knowing I am so helpless to make her feel better. And she suffers and looks at me for comfort.
Fast forward to today and the arrival of my mom picked up my spirits some. Olivia doesn't know her nana but in a few days she'll realize she has two great gradnmas, great meaning they are great not old haha.
We got a new family in the room tonight. The poor lady cried herself to sleep worrying about her daughter. I know I feel like that sometimes, and Melanie does as well. She misses my loving snores at night lol. I have done this post over the day and if you can tell Olivia just took almost 3oz in her sleep like a champ. I'm very happy with her and as Melanie said we look forward to the family finally having a holiday together, easter. Maybe even a normal life for a year or two!! I'll post an update tomorrow.
Tomorrow is her echocardiogram so cross your fingers everything looks amazing. I think there are 3 things left on our discharge list: eating the enfaport with gusto, great echocardiogram, and the fluid clearing up around her lungs with the diuretics. Once those things are knocked out of the park as week or two at the RMH is our last hurdle to flying home. Not to mention a cardiology appointment and clear chest xrays. Chylothorax always likes to rear its head. However, the physician's assistant is confidential it has healed and 6 weeks of enfaport is the worst it will get. Please please please.... Since I'm in a good mood I'll leave you with the song that keeps playing over and over again in my head....
"All my bags are packed I'm ready to go.. La la la la la la la la I'm leaving on a jet plane ready to be home again.... " (I forget the lyrics it sounds good in my head). First thing I do when I get back is hug the heck out of Nathan and Delilah and definitely never let go! Then regain manliness, poker game, hooters, a good outing with my friends. I miss everyone so much even my boss. Hahaha. I do have a great boss. Thank you UNO for being understanding.
I'm like Nathan trying to avoid bedtime
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Glad everyone is doing well! Robin
ReplyDeleteI am so glad no more tubes and that the chylo seems to be clearing up on its own. One less thing for you all to worry about. Now...get that little girl to eat and get the heck out of there. Have a good day today and I am still praying you are all home for Easter.
ReplyDeleteBrett, I love your reports! Go Dad!
ReplyDeleteLove to all from Judy and NC Decks