RSV, I think you got the best of me, but not Brooke

Dear Life, please give me a break from all of these curve balls.  I need time to heal. 

We had some more serious curve balls thrown at us over the past week and a half, and I’m not sure how many more I can take.  Brooke came down with what appeared to be a cold.  It started with a cough, then the snots, phlegm for those who like the more formal terms.  It got much worse by Saturday night.  She had a brief low grade fever and we were up most of the night trying to clear her nose and helping her to eat.  She was only eating about half of her normal intake at this point.  Sunday things didn’t get better, but no worse either.  Monday she headed to the Ped with Steve to get checked out; all was clear other than the severe cold symptoms.  Then came Tuesday, Braxton’s birthday and this is when the fun began.  We were at our scheduled clinic appts, and when we sat in the room to meet with Dr. Bowman, Brooke’s Neurosurgeon, she started wheezing and was having a hard time breathing.  They grabbed a pulse ox and her O2 count was in the low 80s and even dipped into the 70s, so they put her on oxygen, called an ambulance and off we went to IL Masonic.  We HAD to go to the nearest ER because her status was not stable.  She got a nebulizer treatment of Albuterol on the way, a whole 5 minute trip. 

Once in the ER a team went to work to get blood drawn and off for testing, mainly RSV and Influenza.  We were told they’d have the results in a couple of hours, only later to find out they send them out for testing and we didn’t actually get the results until Friday morning (blood work was done on Tuesday).  Needless to say we ended up getting transferred and admitted to ‘Observation’ at Children’s a few hours later.  I felt bad for Brooke and for Braxton, it was his birthday after all.  Thank goodness for our fabulous daycare, they had a party for him and his buddy who shares the same birthday so he had a great day regardless. 

We ran out of our 48 hr max stay in observation at Children’s so they moved us up to a penthouse suite on the 21^st floor, too bad the lake is gray and dull this time of year.  We spent 3 more days here waiting for Brooke’s O2 count to go up when she slept.  Her poor little lungs just couldn’t take in enough oxygen to keep her levels in the 90s while she slept.  They suctioned her so many times, deep suction and just nasal suction that she started screaming the minute she heard the machine.  She was so hoarse from the irritation she could hardly cry, it was so sad.  It is the first time I heard my baby cry a ‘true’ cry, a painful - help me cry, not the typical ‘I’m hungry’ or ‘mad’ cry.  It broke my heart and brought me to tears, but the suctioning had to be done

There were many student doctors keeping a watchful eye on her and the Attending’s.  One of the student Drs just was in awe of her and would always stop by to see her.  He actually finished feeding her and watched her while I ran to Walgreen’s to purchase a humidifier for her one afternoon.  The Attending said it was good for him because he couldn’t be a Pediatrician without ever feeding a baby, so it worked out well.  J 

By day 4 I was getting a little delirious and at the end of my rope.  What we thought was going to be a 2 day stay turned into 5.  I finally asked for a chest x-ray Saturday morning, it was mentioned, but they were going to wait until Monday if nothing changed.  Thank goodness one of the Dr’s agreed with me that we shouldn’t be waiting until Monday to move to protocol 2.  By this time we had gotten the positive results for RSV and they called her condition ‘bronchialitis’ the whole time, so she was being treated for the right issue and her lungs were clear, no infection.  It was just taking a while to get this virus out of her system.  I snuck in her probiotics and bought a humidifier in hopes of them helping, not sure if they did or not, but they didn’t hurt because she finally took a turn for the better on Saturday, mid-day and we were released that night around 7pm.  Thank God!!!

Happy late Valentine’s Day! 

We made it to week 5 of casting

This may be our last week, woohoo!  Not 100% sure yet though, we’ll find out later today.  Her knees have over a 90 degree flexion which is awesome and her feet are fairly corrected, so much so that if after this week her heel on her right foot has come down enough (her right foot had the vertical talus, but now we’ve discovered, not a full vertical talus, but only partial), she may not need to have the tendon release surgery.  I’m hopeful for no surgery.  Even though the surgery is minor, it’s still surgery and she’s a baby, my baby.  I’d prefer no surgery. 

After the casting is complete she will be fitted for braces.  She may have 2 sets.  A set of AFOs, which will be below her knees for during the day and a pair at night to keep the flexion in her knees.  The pair at night for the flexion in her knees would hopefully only be needed for a month.  The AFOs, which I believe stands for ankle-foot-orthotic, are something she will likely have her entire life.  These will help compensate for her lack of muscle in her lower legs.  Only time will tell, but I’ll update with that news when the time comes.  Until then, take care and please continue to pray for our little girl.  She’s still shunt free and I pray every day she stays that way.