Just a quick update. We finally made it home yesterday at 4:00 p.m. after an issue with the CHOC pharmacy not having Tiara’s antibiotic to take home with us. Of course the dosage she needed was back ordered but Tiara and I were getting super antsy to get out of there so I asked the pharmacist to change the strength and luckily the doctor agreed.
Funny enough I mentioned my predictions of Tiara’s future to the resident and when the pulmonologist came in to see her in the morning he started talking about a feeding specialist, and a g-tube. Just so you know this was the doctor we saw in clinic before admission not her regular pulmonary doctor. I realized I had made a mistake sharing my thoughts because now the team was worried about her becoming dehydrated. They wanted her to stay longer and see if she could drink enough fluids to stay hydrated. Oh no! I promised to keep her away from the thin liquids and return if she became dehydrated. He then gave me a small lecture on making sure I returned immediately if there was any problems.
I laughed a little and reassured him he could count on me to bring her right back.
As for today, we will be hanging out at home all day enjoying just being home.
Today is May 1 and the first day of Tuberous Sclerosis Awareness Month. I haven’t set up my page for the walk this month in Long Beach, nor have I planned anything special at this point for the blog to talk about TSC because in my mind this blog has become a constant reminder of Tuberous Sclerosis. Don’t worry the page will be coming, just not today.
On a totally different note, my roses and garden looked so amazing when we got home yesterday, I was thrilled. Why is it when you leave your house for a week everything grows while you were gone but if you stay home and stare at the flowers, nothing changes. It’s like a trick. You know what I mean?
Gotta go, hear Tiara coughing. Thanks for the prayers, hugs, love, support and food!
xoxo tiffani
I hope Tiara stays well and you can spend Mother’s Day at home with your family. Post some pics of your roses, would love to see how the landscape rock project turned out.
Kim Connelly
So happy you are home. Stick your noses in your beautiful roses and just breathe.
This experience with Iiara is get another example of why, if you have a family member in the hospital, you never ever trust the doctors, nurses, and techs to take care of them excusively. Always have a family member present to keep an eye on things and act as an advoctae for the patient.
Tiffani – how’s Tiara been doing with the thickened liquids in the hospital and at home? Is she noticing at all? Something tells me it’s going to go very easily but I’m thinking about you guys!
Mik
So glad you are home. And my little rose bush is blooming too. Just enjoy the spring and being home. Will keep praying for Tiara’s lungs.
So glad to hear you are home again and definitely keeping the good thoughts and prayers coming your way as always!!