A Long Day at the Hospital!

Annie had her huge CDC (Children’s Developmental Clinic) appointment today where we meet yearly with almost all of Annie's medical team.  (Unfortunately we don't get to see her urologist, neurologist, or ophthalmologist at this clinic.)  I dropped Lexie and Molly off at a very kind and generous friend's house at 7:30am and got to the hospital with Justin by 8:00.  We went right in and got measurements and vitals taken.  Then doctors started to file in.  We saw 9 specialists today and then had a series of scans, x-rays, and tests, a stop at the pharmacy and were home just before 4:00pm.

First we saw the orthopedist, who we updated about Annie’s dislocating knee cap and ankle since her surgery.  She also agreed to write orders for a new wheelchair for Annie since her current chair can’t grow any larger with her.  Annie has also been getting pressure sores on her right side either from an increase in her scoliosis curve or maybe because her trunk has grown longer and she’s just tipping to the side more.  So we're all excited for a new chair soon!

We saw the developmental pediatrician who we talked a little with about Annie’s early onset of puberty.  She first started at age 5, but they still say there’s not much to do until she gets through all the phases of puberty. So for now we'll just wait and enjoy watching her grow up.  We also explained to the developmental pediatrician about Annie’s terrible drooling, especially when she has cankers due to biting her lips and tongue during seizures.  He thought for a second and then asked us if we ever considered that the cankers were coming first.  He explained that possibly Annie develops cankers, feels them in her mouth and starts to try to bite them, this then startling her and putting her into seizures.  He explained that some people chronically have cankers due to herpes simplex—a virus that can cause cankers.  So his idea was to put Annie on a prophylactic dose of an anti-viral medication to help prevent her from developing cankers.  We’re not sure if it will help or not, but we’ll try it for a few months and see if the cankers and drooling improve.  It’s definitely worth a shot!

We met briefly with the neurosurgeon, mostly because we met with him at length last year to discuss Annie’s high tone in her right leg, but since she had surgery on her knee and ankle this past year, her spasticity in that leg is no longer quite the issue it used to be.  We still discussed the surgically implanted baclofen pump with him, but all agreed that at this point she wouldn’t be a good candidate.

The dietician also met with us to monitor Annie’s weight and growth and analyze her nutrient intake.  Annie has held steady at 52 lbs over the last 2 years or so (since she is entirely tube fed we control exactly how many calories she gets), so the dietician felt like we should increase her calorie intake by 5-10%.  I was hesitant to do this since Annie’s ribs aren’t showing and she does have a little tummy, and the heavier she is the harder it is to lift her.  But I then explained that we are switching formulas next month that will give Annie an extra 52 calories a day—which equals an exact 5% increase, so we left it at that and called it good.  So I'm happy we don't have to change Annie's feeding schedule, at least for now.  We suspect that Annie will need to continue to take her vitamin D supplement, but we’ll get the exact results of her blood work later this week.  Today Annie was in the 79th percentile for height, 27th for weight, and 3rd for BMI.

A metabolic disorders specialist met with us and Annie went for her DEXA bone density scan.  Her bones are slightly more dense than last year, so that’s great.  Her spine was not as dense as her hips however, but still dense enough that she still doesn’t require calcium supplements.  The metabolic specialist was actually surprised at how dense her hip bones were considering she's non-ambulatory.  Yeah for Annie!

We met just with the pulmonologist’s nurse practitioner which was disappointing.  She didn’t seem very knowledgeable about sleep disorders and couldn’t decipher the data from our CPAP machine memory card (that they even had a hard time locating in the first place).  So we’ll hear back from the pulmonogist later this week too, to find out really how much Annie is keeping her CPAP mask on at night and how much benefit she’s really getting from it.  They'll also check her blood gases level to check her carbon dioxide levels which can get high in children with sleep apnea.

We met with the physical therapist to talk more about a new wheelchair, the importance of being in a stander, and working on range of motion.

The occupational therapist talked with us more about getting a lift system in our home.  Although we are perfectly capable of lifting Annie ourselves, we know that in-home nurses are usually not allowed (or able) to lift a child over 50 lbs, so many families are required to get a lift system in their homes simply to maintain in-home nursing care.  The OT will eventually come to our house to evaluate our situation and needs when we decide to take that plunge.  She also gave us a reference to an in-home therapy agency that we might consider using next summer if/when Annie won’t be in school.

The social worker briefly met with us, but we really don’t have any needs for her right now, so that was quick and easy.

And we did finally get Annie's results from her UA from last week—it was normal, so now we’ll be switching her prophylactic antibiotic to batrim instead of cipro.  She used to be resistant to bactrim, but they suspect that it’s been long enough now that bactrim might work, and it’s safer to take prophylactically than cipro. We'll try it out and see what happens.  If she quickly gets another UTI, I'm sure we'll go right back on the cipro.

So we met with doctors from 8:00am till about 12:30pm, then had an hour lunch break before we had to be back for Annie’s series of tests.  We grabbed a quick lunch at Jason’s Deli, then Justin went in to work, and Annie and I went back to the hospital.  First she had her DEXA bone density scan, then x-rays of her hips and spine to monitor her scoliosis and hip dislocation.  I wish we could have had the x-rays sooner to be able to talk to the orthopedist today about the results.  We’ll hear back in a few days whether her scoliosis curve is increasing (last year it had gotten to 18 degrees), and to find out if her right hip might be starting to dislocate (her left hip has been out for several years).

After those tests, we went to the lab for blood work for blood gases level, vitamin D level, and various other things.  The loud opening of the door into the room startled Annie and immediately put her into myoclonic seizures.  The phlebotomist had no idea she was having seizures of course and continued to do the finger poke.  But then when she went to put the band-aid on, it just wouldn’t stick.  The phlebotomist was amazed at how cold and clammy Annie’s hands were so she had to wrap Annie’s whole hand to keep her from getting blood on her clothes.  I didn’t have the heart to tell the phlebotomist that Annie had been having seizures the whole time and that’s why she was so clammy. At least the seizures kept Annie distracted from getting her finger poked.

By then it was about 2:30pm and we were finally free!  I picked up Molly and Lexie, made a stop at the pharmacy to get all her prescriptions and was hope just before 4pm.  What a long day!  But it’s so great to just go to this one clinic appointment and be able to see so many doctors at once.  It feels very productive, and I love feeling like Annie is important to these doctors and getting the best care.  It was nice to have a day alone with her although I can think of much more fun things to do with Annie than sit at the hospital.  Annie did great today!  She kept her CPAP on all night last night, so I think that helped.  She was happy, smiling, and wiggly all day today!  I loved it!

A huge thanks to my friend Heather today (and all my friends who regularly take my children into their homes).  It's wonderful to know that I have such amazing friends that are willing to watch Molly and Lexie for 7 hours at a time!  I'm grateful to know they are in good hands and well taken care of, especially by a friend who so willingly and cheerfully welcomes my children into her home! Thank you, thank you!