Surgery Update

Lucy's cleft repair surgery was L-O-N-G (She was scheduled for later in the day, so we were the LAST people in the waiting room, like even the front desk people cleaned up and left) but according to the doc, it went well.  She received 6 stitches in the soft tissue of her throat somewhere that will eventually dissolve and hopefully lead to more successful swallowing for her going forward and less "junk" getting into her lungs.

Her tongue was quite swollen and her throat was quite sore after surgery, so she understandably wasn't too happy.  Since she has a history of respiratory challenges and it was quite late in the evening when she came out of recovery, they decided to send her to the ICU instead of a normal floor just in case she needed extra support.  However, true to form, our rockstar did awesome without oxygen all night and woke up hungry in the morning.  We were able to go home on Friday, which was nice. 

She isn't thrilled to be on a soft food diet, but we are making the best of it with lots of soft fruit, well cooked pasta and grits and are happy to be recovering at home as a family.  I expect a low-key holiday weekend in front of us.

Thank you for your continued prayers and support this week - we felt it!  Keep them coming for long-term success for this surgery!

Romans 12:12 - Be joyful in hope, patient in affliction, faithful in prayer.

Health Catch Up

Lucy has had a good summer, but she has definitely not been 100% from a health perspective.  She's had quite a few throwing up episodes, although not as severe as some in the past.  She had pneumonia again at the end of May and a few other respiratory infections.  I asked to have her blood levels retested based on her lack of energy and we found her hemoglobin was quite low again (7.8 - should be 10+), so she was severely anemic and needed a blood transfusion in the middle of August.

Her most urgent medical need right now is that she has a laryngeal cleft - basically where her vocal chords and larynx meet up and should close when she swallows, they don't close, so she slowly aspirates liquid into her lungs.  The theory is that all that gunk builds up in her lungs and causes ongoing infection, irritation and sickness.  This has been present since birth, but not an issue when originally diagnosed since she had a feeding tube.  In the midst of switching care providers, it was re-looked at and our current ENT doc thinks it definitely needs to be repaired.

So, today (Thursday) is surgery day.  The stitches each take 20 - 30 minutes and she'll likely need 5+ so it has the potential to be a few hours in surgery, with a 1 - 2 day recovery in the hospital.

We'll keep you posted on how it goes and how recovery and 2nd grade go.  I'm cautiously optimistic she'll be less sick this school year and we are on the path to permanent solutions to some of her complex medical.

Also, please know she really did enjoy summer!  She went to Art and Chemistry camp and NASA Exploration camp.  She made new friends, and went to the lake and Duluth and most exciting of all - Disney World!  She is amazing and strong, even when her body is fighting to stay healthy!

One Month Home

Joy :)

Yesterday marked one month home for Lucy.  It's been wonderful to have a "normal" schedule of work, school and weekends to relax.

Lucy has been feeling good since we've been home - lots of energy, eating well, no throwing up.  We are averaging about one doctor's appointment a week:
 - to check her swallowing functionality (questionable - there may be some aspiration into her lungs - like VERY small amounts, but still a potential factor)
 - To follow-up with GI (uneventful visit - going to try to drop one of her maintenance medications that was supposed to keep her from throwing up...hope it goes well!!)

In the next few weeks, we have hematology (to see why her red blood cells were so low and not reproducing fast enough), a chest CT scan, pulmonology and ENT.  There are also some patient advocacy conversations I'm having with the hospital based on how some things happened during Lucy's hospital stay...oh and of course a pile of bills to review and pay and prescriptions and nebulizers to pick up and administer.  We are down from 7 different medicines when we left the hospital to 3 though, so that's awesome!!

School has been going great - she's happy to be back and her class is happy to have her back full-time.  HUGE plug for the Mounds View School district - they have been so amazing to work with during all of Lucy's health issues.

We feel a little bit like we missed the Christmas season this year.  We bought and wrapped gifts (thanks mom for wrapping 90% of our gifts :)), sent the majority of our Christmas cards out and spent time with friends and family, but it honestly took most of our holiday break to unpack, finish laundry and mentally recover from the ordeal that is 2 months of sickness and 10 days in the hospital.

Thank You so much for the gifts, care packages, thoughts, prayers, phone calls, text messages, meals and love you sent us - it was felt and appreciated!