Saturday, April 30, 2011

Two weeks of news

This update is way overdue.  So much has been happening and I just have not had time to sit down and write.  :-(

Unscheduled Weight Check (4/19/11):
I stopped by the pediatrician’s office last Tuesday to pick up a prescription.  I could not help but to borrow their scale to check Callie’s weight… 18 pounds, 12 ounces!!!  That is a gain of over 2 ½ pounds in 4 weeks!!!  Wow.  I think it is safe to say the tube feeds of 900 calories per day are working.  Very exciting!

GI Appointment (4/21/11):
Last Thursday was Callie’s first follow up appointment with Dr. Enav since getting her tube.  He was very pleased with her growth.  She also grew a ½ inch in length (28 ½ inches).  However, he was concerned to hear she is no longer taking anything by mouth.  He would like me to offer her a bottle of EleCare at every feed before I put the formula through the tube.  This was our original plan, to get her to take as much from a bottle first before using the tube, but since returning home from the hospital she refuses the bottle every time.  I do not know if this is due to the disgusting taste of EleCare (at least to me) or because she never feels hungry.  We are going to step up the feeding therapy to see if we can improve in this area.
We are also going to make an appointment at the tube clinic to see if the nurses can help find a better way to keep the tube in place on her little face.  The tape keeps rolling back and needs to be replaced daily, but the supply company/insurance does not provide enough tape to make such regular fixes.  And of course the tape cannot just be picked up at Walgreens.  It has to be special ordered and costs up to $4 per piece!  Her cheeks also get irritated from the tape, so maybe the nurses can come up with a better way to affix the tube. (Update: This appointment is now scheduled for May 11th.)
Dr. Enav advised another appointment that has to be made is a follow up endoscopy at the beginning of June to confirm her esophagus has healed.  This will be a repeat of the procedure we did in the hospital last month where they put her under light anesthesia.  In addition, they will do an impedance pH test at the same time.  This is the procedure I described earlier that involves inserting a catheter through a nostril, down her throat and into her esophagus at the point where most acid reflux occurs.  A sensor on the catheter records the reflux for 24 hours.  We will be able to see if her current dose of Prevacid is taking care of her reflux or if it will need to be adjusted.  We hope that the endoscopy will show her esophagus has healed and the impedance test shows her reflux is under control.  (Update: This appointment is now scheduled on June 8th.)
The final appointment that came out of this visit with Dr. Enav is our big upcoming appointment with the EE clinic.  This will most likely be our most important meeting in June.  It is my understanding that the EE team is made up of Dr. Enav (GI), Dr. Alpan (allergist), Stacie (dietician), Keisha (GI nurse), and Denise (allergist nurse/assistant?).  We will meet with everyone at once and they will come up with a plan for further treatment of her EE as well as transitioning her from the NG tube to solids taking into account any allergies she may have after her upcoming allergy test.  I am happy to be connected with a GI doctor that specifically specializes in EE (this was just luck – I picked him randomly before knowing Callie had EE, or ever hearing of it for that matter).  Apparently he is quickly becoming one of the top doctors in the country focusing on EE, and the EE clinic that he and Dr. Alpan have set up with everyone participating to treat a patient together at once is unique.
I learned something unfortunate during this GI visit about EE.  Apparently it is a chronic disease.  I did not realize this.  I thought she had an inflamed esophagus, we would let it heal for a few months, and then she would be done with it.  If I understood correctly, it is something she will always have.  Hopefully we will be able to keep it under control, but it will always be there and at risk for flaring up.  It is a relatively new disease and not much is known yet.  Hopefully there will be new information available in the upcoming years as more research is done.  At least for now we seem to be under the best medical care possible in the DC area.

24 Hour Video EEG (4/22/11):
Last Friday we checked into Children’s National Medical Center (CNMC) for a 24 hour video EEG.  Shortly after arriving Callie had many wires pasted to her head.  She did not like this procedure and cried during the 20 minutes it took to hook her up.  Then the wires were attached to a computer that recorded her brain activity and she was placed in front of a video camera.  I was asked to adjust the camera so that it remained on her for the duration of the test.  We had to stay in the room and just moved back and forth from her crib to a little couch.  It was an uneventful stay.  I just had to keep her entertained and prevent the wires from getting pulled.  There were some disappointments during the stay… CNMC does not have wireless internet or free food for parents!  Note to self: Stay at INOVA Fairfax (free room service-style food service and wireless access) instead of CNMC whenever possible!  The biggest challenge of the stay was getting the paste out of her hair after the wires were removed on Saturday.  I washed her hair 4 times before leaving the hospital and it was still a greasy mess.  Luckily it finally came clean after another 6 washes or so at home.  We were released promptly after 24 hours and told the results of the test would be received in a few days.

(Update: I waited until the following Wednesday for the results, but there was no word from our neurologist Dr. Pearl.  I emailed him as well as his nurse for an update.  I waited patiently for another 48 hours until Friday, a full week after the test.  I was hoping and starting to assume no news meant good news, so I was surprised when I got his nurse Meg on the phone Friday morning and she told me the results came back abnormal.  She sent me a copy of the report and it read:

EEG FINDINGS:  There is a posterior dominant rhythm of 7 Hz reactive to eye opening and eye closure.  There is intermittent bitemporal slowing.  The anterior to posterior gradient of amplitude and frequency was maintained.  Sleep architecture was normal, including the presence of synchronous and asynchronous sleep spindles in stage II sleep, as well as vertex waves and K complexes.  There were no interictal epileptiform discharges.  There were no clinical or subclinical seizures.  There were no push-button events.  

Heart rate was 136 per minute.  The QTC interval is not calculated.

IMPRESSION:  This is an abnormal EEG due to the presence of intermittent bitemporal slowing, consistent with the known structural abnormality.  No clinical or subclinical seizures were captured.

I did not know exactly what this meant and was suddenly upset no one had called and explained the results.  I fretted all day and worried I would not have an update before the weekend.  Then Dr. Pearl called and set my mind completely at ease.  He is always wonderful to talk to.  He apologized for taking so long to follow up and advised he was very pleased with the EEG.  He said there were no seizures or signs of infantile spasms.  Yes, there was a little slowing, but nothing compared to what her EEGs showed last year.  He said this abnormality can be expected because of her PMG and he is not concerned about it.  She can remain medication free at this time and instructed me to call immediately if she has any signs of a seizure.  I hung up, said a prayer of thanks, and shed a few tears of relief and joy.) 

Allergy Patch Test (4/25/11):
This day was the start of another busy week (7 scheduled appointments!).  Our second appointment of the day and week was to get an allergy patch test placed on Callie’s back.  They placed small spots of pureed food (19 different types) under a large sticker/patch on Callie’s back.  

We received instructions to leave the patch in place for 48 hours and then remove it and take pictures.  We were then to return to the office 24 hours after that to get the test results read (4/28/11).  I was very disappointed to learn Callie is allergic to most of the foods they tested! 

Most allergic -- egg, wheat, soy
Moderaterly allergic -- chicken, turkey, beef, oats
Slightly allergic -- pork, corn, bananas, peas, potatoes, rice, barley
Not allergic -- milk, green beans, carrots, tomatoes, apples

This makes me very concerned about introducing solids back into her diet, but I am trying not to think about it too much right now.  I have high hopes that the EE team will know what to do and I will wait to find out the big plan in June.

I think that sums up the major events of the last two weeks.  Callie has been her usual happy self and seems to be doing especially well in her therapies (PT/OT) lately.  We are pleased with the progress she is making in her growth and development!

Saturday, April 16, 2011

Recent Pics

We have been very busy lately!  Here are recent pictures:



 Trip to Florida:

First haircut:

Last photos before the tube:

Trip to Puerto Rico:

The tube feeding is going well.  We have a routine now and everything has been going pretty smoothly.  I swear Callie is getting bigger every day!  She is growing right before our eyes.  She feels heavier and her size 3 diapers are finally getting smaller.  We do not have another weight check for a few more weeks but I think I am going to have to sneak in and use the pediatrician's scale in the meantime because I am curious to know what she is gaining.  This coming week we will meet with Dr. Enav, her GI doctor.  I am anxious to hear what he thinks about her growth so far and what he thinks about a plan/timeframe for getting rid of the tube!

Friday, April 8, 2011


Well, I wish I could report that it was smooth sailing after we returned home last Friday night, but it was anything but.  Callie vomited at nearly every feed for the first 24 hours.  I was in a state of panic, thinking with dread that we were headed back to the hospital.  Instead, the GI doc on call gave me instructions for slowing down her pump rate and reducing her feed quantities.  We were both very sick over the weekend and I think that is what contributed to her problems.  By the end of the weekend luckily everything was more under control and I am happy to report things have gone a little better each day since.  

Unfortunately she is now refusing all bottles and taking everything by tube, but I have been able to get her full daily goal amount of 900ccs/30ounces into her for the last five days.  It took a few nights of slow 12 hour feeds, but we made it.  And today I learned it is paying off... She had a weight check and is up to 17 pounds, 11 ounces!!  This is a gain of just over a pound and a half!  This is huge and I am thrilled!

We are going to stay with this EleCare-only diet for another 6 weeks or so until her esophagus heals and we complete her allergy testing.  Hopefully we can then start adding solid foods back into her diet and again start working on her oral feeding skills.  It is my understanding our goal for her weight is around 19 pounds.  Our next weight check with her pediatrician is on May 12th.


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