I know it's been a long time since I've posted. We have been staying really busy in our daily routines. We started back to school in the Fall. Reagan is in Pre-K again this year to give her a full year of social interaction with her peers. She has been doing great "coming out of her shell". She loves school so much & asked to go on the weekends :-)
I have been homeschooling Nolan, part of the reason I have not blogged lately. Between his school, baseball, Reagan's school & therapy schedule, we stay quite busy! All in all, she has been doing great.
We were able to fly home to Texas over the holidays & enjoy a long visit with friends & family. Since returning, Reagan has had a little setback which has landed her in the hospital. This past Sunday she spiked a 103 temp & had labored breathing. I took her to the ER on Ft. Belvoir & she was immediately put on oxygen, given an iv for iv fluids & a dose of Rocephin. She was tested for flu & strep but both came back negative. Initially, they thought she might have some kind of pneumonia but after looking at her X-ray, it appeared she had something viral. (*Not surprised, as viruses hit Reagan pretty hard due to her DiGeorge Syndrome.) A transport by ambulance was then setup to transfer her to Walter Reed in Bethesda, Maryland where they have a PICU to better treat her & where her specialists are. Upon arrival, she was admitted to the pediatric floor but overnight she required more oxygen support & was working harder to breathe so the next morning (Mon) she was taken to the PICU. We are still in the PICU now. Many tests & cultures have been sent off, none of which have grown anything yet. The PICU is basically supporting her needs & covering all the bases just in case. She is on 2 antibiotics, Tamiflu, several breathing treatment meds & high-flow oxygen at the time. She has been on 8L of oxygen but reduced to 7L this morning. Her lungs still sound real crackly but she's moving air & breathing more comfortably which is a good sign! Reagan is also starting to show me signs of improvement like wanting to eat, color, watch cartoons, etc. unfortunately, her lungs usually take a little longer to "catch up" so looks like we'll still be here a few more days.
A big thanks to Rod's unit for being so supportive & our friends in the area offering to help with Nolan. We truly appreciate it as juggling kids in & out of the hospital is a challenge in itself!
On a side note, Reagan is scheduled to have her next heart cath in California Feb. 1. Her cardiologist here is communicating with the drs at Stanford on whether to go through with that as scheduled or postpone due to this illness. Still waiting for an answer on that. Also, at Reagan's most recent dental evaluation, they found she has two cavities that need fillings. She will have to have this done at Children's National Hospital here in DC for cardiac monitoring purposes. This is another issue we are trying to work out scheduling for. We are waiting to find out if the Stanford team would like her to have this completed before or after her cath. She was scheduled to have it done this Friday but obviously had to cancel due to her hospitalization. So, at this moment, not sure if our trip to California is still on for now or not.?
As always, Thanks for all your prayers & support!!!
