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We’ve been discharged!!! We are so honored to have benefitted from all of the prayers, rosaries, offering up, and support for little Reggie because boy were they powerful! Regina went from needing an IV and 1 liter of oxygen yesterday and sleeping all day, to needing no more oxygen and eating and drinking literally overnight! It made my head spin. The doctor came in this afternoon and asked us if we wanted to go home. Um, YES. Thank you again, from the bottom of our hearts. We are so glad to have our Reggie back home. #reggiegram #luckytuftWoof. I’ll be honest, today was disheartening. Scott switched off with me last night and stayed with Reggie so that I could go home and get some sleep. Then, I came back this morning so that he could go back to work. Her IV was still out this morning and Scott had managed to get her to eat and drink a bit, but her breathing was bad. She stopped eating and drinking altogether and they had to put the IV back in by the afternoon. She started the day with only .5 liters of oxygen which was great, but then ended the day at 1 liter due to desats. She was deep suctioned which really improved her breathing, at least. Regina has spent most of the day like this or snuggled in my friend Christy’s arms. Poor girl is wiped from fighting this. It seems like all of my dear friends are going through hard stuff right now too, so know that I am offering up for all of you. #reggiegram #luckytuftToday has been a better day for Reggie! No fevers and she has perked up a bit. Last night was a doozy. They kept aggressively trying to reduce her oxygen support, then she would fall asleep, and immediately desat (her oxygen levels would drop), alarms would go off, she would wake up and wail, they would put her oxygen back up, she would take a while to calm back down and her oxygen levels would be excellent, then they would turn her oxygen back down, rinse and repeat all night long. Oh, and also deep suctioning and screaming and she pulled her IV out which in turn made the machine make a sound like the Final Trump. So, no sleep was to be had for either of us. I asked the doctor to give us a bit of a break on the oxygen weaning today so that we could get some sleep, and he kindly assented. Reggie was able to take two naps, thank goodness. Her arm was getting puffy from the IV, which the nurse didn’t like at all, so she took it out. Now, we see if Reggie can drink enough fluids to keep it out. 😬 Thank you so much for all the prayers and support, we really felt them. #reggiegram #luckytuftLittle Miss was not thrilled with her bath. So far, our hospital stay has been a roller coaster. She was bad when we came in and needed 2 liters of oxygen, then she got better and her nurse turned off her oxygen last night. Then she de-satted (her oxygen levels tanked) and they had to turn back on the oxygen. The rest of the night was a lot of screaming while they suctioned her. Then, this morning, she spiked another fever and her breathing got really bad and her oxygen support had to go back up. The doctor doing the rounds this morning told me she could be here for weeks, which really dampened the day. After passing out for several hours, she perked up a good bit and they tried taking her off oxygen again. But her oxygen levels tanked again and they had to put her back on oxygen support. So, that is where we are now. Just hoping she starts recovering soon without regressing back again. Thank you so much for all the prayers and support and for bearing with me if you made it to the end of this tedious novella. She is certainly a feisty one and has been giving anyone who comes in to mess with her Hell 😂 #reggiegram #luckytuftSo today’s post that had been scheduled in my head was a charming happy third birthday to Rhea post. I should really stop doing that. The best laid plans of mice and men. 🤷🏼♀️ Regina was really struggling to breathe this morning and spiking another fever, so I took her to the after hours ped. Ped sent us straight to the ER. ER admitted us to the hospital. Reggie is requiring some oxygen and IV support while she recovers from this bronchiolitis. Babies with Down syndrome tend to have smaller airways, so they can struggle a lot with respiratory things. I’m trying really hard not to feel sorry for myself seeing as this is the second year in a row Reggie and I are spending Rhea’s birthday in the hospital. 🤦🏼♀️ I’m praying that Regina can recover quickly and we can head back home soon. Right now, when we go home all depends on her and how well she is healing. #reggiegram #luckytuftHappy Heartaversary, Regina!! Hard to believe it was a year ago I was handing your tiny little body wrapped in a blanket off to the anesthesiologist to disappear behind those double doors and have no idea what God had in store for us. Guys, I had planned the most epic post about my thriving girl today, buuuut yesterday she started struggling to breathe and while we were in the waiting room at the pediatrician’s office, she crashed hard, breaking out into hives, burning up with a fever, extremely labored breathing and lolling in my arms. I had to run around the office with tears in my eyes begging for a nurse to come look at her. We came very close to an ER admission. Turns out she has bronchiolitis. Her little heart may be fully repaired (we got a clean bill of heart health from her cardiologist last week!), but she is by no means footloose and fancy free. Yesterday was a sobering reminder that our little ones with Down syndrome can easily succumb quickly to something a typical child would shrug off. BUT! Joy cometh in the morning. She has her new little inhaler and the pediatrician declared her much improved today after anxiously texting me for updates last night. You are a warrior, little girl. We are so proud to call you ours. #reggiegram- Follow Tales from the Mommy Trenches on WordPress.com
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