Another Duke Day Down


Y’all, I am tired.  We were on the road at 7:30 this morning, and made it back to our house with all of our children (one of whom is sick) around 8:00 tonight.  We’ve had our share of doctors, tests, needles, traffic, and fast food… But it was a productive day!

Harper’s first appointment this morning was with her ENT at Duke to discuss her sleep issues and her oversized tonsils.  Fortunately, while she does have very large tonsils, her number of sleep apnea episodes has actually decreased from her first sleep study to this last one.  Because of that, they do not want to do surgery at this point, which was a huge relief for this mama!  Although a tonsillectomy is a routine procedure, any surgery is a bit more complicated with Harper’s history and her medications and her seizure risks, so avoiding that is a huge praise.  For now, we are going back to using a nasal spray before bed every night to see if that will decrease swelling in her airways and help her to breathe a little easier at night (and hopefully sleep better, too).

After the ENT, we saw an audiologist for a hearing test, as was recommended by the developmental pediatrician.  We didn’t have any concerns, but he wanted to be sure that her hearing on her right side hasn’t been impacted by her seizures since they’re always on that side of her body.  Of course, she passed with flying colors and had a pretty good time playing games with the tester, so all good news there.

We had a break for lunch and a stroll around Duke’s campus before going to the neurology clinic.  We have been feeling very positive about Harper’s progress.  She’s only having about one seizure a week, and those are very small compared to what we’ve seen in the past- they’re only lasting about a minute and ending on their own, and we haven’t had to use a rescue medication in a few months now.  While this is definite improvement, the neurologist wants to see her 100% seizure free.  So, we are increasing her Trileptal dose once again.  Once we get to a place of seeing zero seizures for a few months, they would like to start weaning her off of the Topomax because of the negative side effects associated with it.  With that medication, Harper’s appetite is decreased, she is unable to sweat and therefore overheats easily (not easy to deal with in the summer around here!), she has ocassional hallucinations, and there is a risk for issues with her kidneys.  For now, it has to stay as it is for seizure control, but we will reevaluate in three months.  The neurologist also noted some change in Harper’s muscle tone this time.  She said the right side of her upper body was weaker and tighter than she had noticed before, so we plan to check in with her physical therapist regarding that.

Our final stop was the lab, which of course was the most unpleasant part of the day.  Harper is old enough now to be well aware of what’s going on at the doctor, and she is very compliant.  She offers her arm for the blood pressure cuff, sits still for weights and measurements, and does whatever they ask of her.  But she cried big crocodile tears today when they pulled out the needle for bloodwork.  She still sat still and let them stick her, but how my heart ached when she sobbed and said, “Mommy, I don’t like it!”

I am so grateful tonight to be home with my babies and my husband who walks beside me on this crazy journey.  We both had our moments today in the hospital as little reminders of unpleasant memories came our way- the helicopter that landed above us, that same helicopter that has carried our baby twice now… The smell of that hospital soap that we used to scrub away the germs before we could walk in to see our girl… The parents weeping in the waiting room… The lady giving behind-the-scenes tours to terrified expectant parents.  It can be so sad and so scary and so overwhelming.  

But we get to leave that place with our daughter, and come home and get back to our “normal” life.  I can never express enough gratitude to God for that gift.  I often end these posts with our latest prayer requests… Tonight I ask you to say a prayer for those families who didn’t get to leave the hospital with their sons or daughters today, for those who are walking hard journeys and need the strength that only He can provide, for those moms and dads who are weary and cried out and need some hope.  I’m praying that God will reveal himself in mighty ways to those families, and that we will all remember to give thanks for the gift of each day.

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