Bad Saturday for Brooke

Yesterday was awful. It started out fine but quickly went downhill. Brooke had one of her "unexplained shaking/blue nail" episodes yesterday morning. Her body gets really cold, then goosebumps appear, lots of shaking like she's cold, her nails turn blue, her breathing is unusual and she does a lot of yawning. Her oxygen stats were low (84) but climbed to 95 within a few minutes. We took her temp. and it was 102, even though she was cold. Once we got her calmed down with daddy holding her - the heat hit. She was hot! We did tylenol and let her sleep it off. This is the same thing she has done twice in the past after the salmonella. Nurses in the hospital witnessed it once and couldn't really figure out what was going on? It's a cross between a seizure and hyperventilating. Called the on-call home health nurse and she felt it was a febrile seizure.

So we decided to do her long infusion (4 hours) since we were off a few weeks due to the INR levels being so high. (Don't need to be putting two needles in a belly when the risk of bleeding is higher than normal.) Upon a trip to potty, I noticed something not right when I wiped her. Turns out she has another one of her spots that had become HUGE and infected practically overnight. We didn't even know she had a spot.It is awful looking! So I called the on-call home health nurse back and she suggested we take her to the ER once the infusion was over. We knew she needed to be on an antibiotic. We put Brooke in bed to finish the infusion and with about 30 minutes left to completion - she had another seizure. Then the fever hit. She doesn't do this with high fever typically. Whatever it is - it's scarey because of the blue nails, labored breathing and oxygen levels. Yep...I have my own oxometer...it helps me get through the big seizures. Best money I ever spent for peace of mind! I can watch her CO2 levels and heart rate with my machine and it's tiny...fits in my purse.

Long story short...we stopped the infusion and spent the next 3.5 hours in the ER. I have to admit...this ER experience was a good one thankfully. The doctor we saw (Dr. Colon from Puerto Rico) was very nice and thorough and he listened to us. They couldn't get an IV started (after 4 sticks) so we drank root beer instead. Ha. XRay was clear. Labs were messed up in the areas we know are messed up. He prescribed Cipro and told us to follow-up with our PCP. I should end the story here, but you have to hear the rest. Pharmacy X was closed at 7:30 when we left the ER so Brooke went without her medicine overnight. I called first thing this morning to see when they opened and was there in line. 45 minutes to fill it, but they didn't have the liquid so we got horse pills that we have to cut in half. Whatever you do...don't get sick after hours in Clovis!

The fever continues today so all Brooke has done is sleep. She's not eating much or drinking much. Fever is low grade but has zapped her of what little energy she usually has. The plan is to call our PCP tomorrow and try to get in for a second opinion. I will also call UNM to report this to our Immunologist and the Infectious Disease doctor. Please pray for healing. For the antibiotic to kick in and knock out the infection. For the fever to subside so Brooke gets her strength back. Pray for an answer to what these spots are! I noticed 3-4 new ones on her bottom this morning. Thank you all for your well wishes...we couldn't make our journey without you on our side!!!