I expected today to be fairly quiet but as always Tiara never likes to follow protocol. She woke up early and was trying to pull at everything even though she is constantly getting medication to sedate her through an IV. Anyone else would be in lala land with that much medicine in them but not Tiara. She was fighting tooth and nail to break through the effects of the medicine. They finally had to increase the doses as they were worried she was going to pull out her breathing tube.
I learned during rounds that not only does she has the flu and pneumonia but also ARDS , acute respiratory distress syndrome. The doctors talked about how very sick her lungs were and even though she was improving a little, she has a long way to go. They also talked about her having a “superbug”. I did some research and was rather devastated as to what I read. I wont go into what my research revealed because Tiara follows her own rules and isn’t like any other patient.
Just as I was worrying about her not surviving this ordeal she woke up again and kicked me in the head as I was sitting next to her bed. I was holding her hands down to protect her IV ’s and tubes from getting pulled and the nurse ran to get the doctor to ask if she could give her a bollis dose of more meds to calm her down. Tiara tried to sit up and kicked the vent pulling the tubes apart. I screamed for help because I couldn’t let go of her hands and another nurse ran in and put the vent back together. She then started wagging her finger at Katelyn (her nurse for the past 3 days)and I, while giving us the worst looks you have ever seen. If only I could have taken a picture.
After that all happened I stopped worrying completely. Tiara is as feisty as ever and there is no way she isn’t going to recover. It may take a long time but she will get there.
Tuesday Lou is taking the day off, so he is going to stay at the hospital all day with Tiara while I go home and spend the day with Trinity and Tabitha and prepare for Trin’s party. Yes, the party will go on and yes Tiara will still be in the hospital on Friday but Lou will just have to stay with her while I do the party.
Thank you for the prayers, comments and words of support from everyone. Tiara is surrounded by love and good wishes which will only help her recover quicker.
xoxo tiffani
lots of love and hugs. TT is a fighter like her mom. You guys rock! Keep fighting baby girl:)
She’s definitely a fighter! She’s got that going for her. Try to get some sleep while you’re home too! Still praying and sending love your way!
Praying for your beautiful daughter. Hope her lungs improve soon. My daughter has TSC.
Well, I never really thought you were worried about her not surviving. Umm….really, that’s just crazy talk. She’s 14, very well nourished and is extremely healthy (yes, she is because TSC shouldn’t affect her immunity and she’s not on immunosuppressive meds either so…).
She’s clearly just caught a nasty flu (as did you) and her lungs are probably not in the greatest shape to begin with. A few more days and she’ll be back, good as before and you’ll laugh at the insanity of thinking otherwise.
Although it’s unnerving to see a sedated child (my daughter was sedated for an MRI and took very long to come out of it), I can only suggest you enjoy the peace and quiet while it lasts – because CLEARLY once the meds wear off ever so slightly, Tiara (even in her lung-weakened state) is ready to rock and roll! 😉
My thoughts are on you daily … I hope Tiara gets better very soon and even though you have SO much going on .. I know you will make Trinity’s party amazing!
¤´¨)
¸.•*´
(¸¤ Lanaya | xoxo
http://www.raising-reagan.com