Infection and Doctors and Meds, oh my!

Apparently, the infection police are watching closely and felt the need to remind us that there is, after all, a medically fragile child living in our home. So all the fun that we've been having has come to a screeching halt and has been replaced by doctors' appointments, trips to the pharmacy, questionable allergic reactions and preliminary lab results that are not looking so hot. Not so much fun in the So Cal sun.

The fun actually started with our first appointment in the "get established with a million new doctors" marathon. Gracie's new ENT promptly informed me that she had fluid in her ears... BOTH EARS. This was shocking to me, as she hadn't shown any signs of irritability. A quick tympanogram (an electronic and acoustic measurement technique used to assess middle ear status - - i.e. to determine whether the fluid pressure is too much, thus requiring treatment) and voila, we are sent packing with a prescription for Augmentin. Poor Gracie... that translates into lots of diapers and a wicked diaper rash. That was December 10th.

The next day both kids saw their new Pediatrician, who was recommended by the ENT. I really like both docs - - and have definitely had the chance to form an opinion given that we've seen them both multiple times already. That went well and was without any surprises (with the exception of a lovely "two" performance by Preston!).
I have to say, the Pediatrician was exceptional with Gracie and she was exceptional,too! She handled the wait time and stress of being at the doctor, especially another new office, very well. I was incredibly proud of her.

Right before Christmas was Gracie's first Medical Therapy Unit (MTU) clinic eval. This is to get her established with the therapists through CCS (California Children's Services). This finally has been set up after two years of struggling with keeping eval appointments due to Gracie's health and battling with finding a neurologist who would take our knowledge and observations of our daughter seriously. Finally, she was able to have the full diagnostic evaluation this past fall. With that evaluation came an additional diagnosis (in addition to CHARGE Syndrome) which we received in letter form upon return from our first house hunting trip down south. The letter had her diagnosis in bold across the middle of the page:
Diplegic Cerebral Palsy

The "mild-to-moderate" CP diagnosis, in all reality, does not change anything or define anything as far as we are concerned. It only helps explain some of the additional delays and struggles that Gracie is experiencing. We've always known her brain structure is not normal, and we knew we had to wait until she was older to see how it would affect her. This is the (or one of the) answers. It does, thankfully, help her qualify for additional therapy through the state agency.

That same afternoon (after the MTU clinic eval) was cardiology. I got a great feeling from that office, too. Everyone was very friendly and attentive to Gracie, including the doctor, which was a good thing! He gave her "the works" - - echo, EKG, pacemaker check. He wasn't thrilled with the amount of leakage from her mitral valve and was even less thrilled at how large her right ventricle appeared on the echo. I explained to him that she's always had a 'larger' heart, but that compared to the size at infancy and prior to her first surgery, it's (according to her previous docs) much more proportionate to her age/size now. (Incidentally, her first surgery caused a slight "moment of awe" in the OR, as no one in the room had seen a heart that large on a baby her age & size.) Her new doc wanted her back on at least one of her two doses of Lasix each day. (This had been held due to the feeding difficulties. Since we were fighting with proper hydration and calories, her team had agreed to withhold that med.) We suddenly went from a six-month check-up plan to a two-month plan with cardiology. I am hopeful that once he gets to know Gracie and has more time to review her chart, he will reduce the visits.

Just before the New Year was our visit with the new GI doc. He seems nice enough. He was running behind and must have looked at his watch 10 times while asking me very loaded questions about Gracie, starting with, "Why are you here today?" Ummmmm... try condensing that one down! I don't know where to begin. With all of the issues that she's had and continues to have, where exactly do you start a conversation that will need to quickly cover a very detailed 5 1/2 year history?
In a nutshell, he got very few of the details (It will take time, I know, for him to learn about Gracie and for him to read and listen to all that we have already tried.) and said this, "She needs to gain weight. In order to gain weight, she needs more calories." Ya think?!

Needless to say, not a stunner of an impression. But I will be (slightly) patient. Gracie sees him again the first week of February.
(Her weight and feedings continue to be a huge struggle. She dropped more after the move and at her lowest, was an even 23 lbs - - her lowest weight in over three years. I have been FIGHTING with her each day and have put on 1 1/2 pounds. It is a struggle with each feeding. And now, in addition to the actual discomfort that feedings can have for her, there is a behavioral issue surrounding feeding and control.

New Year's Eve... follow-up with ENT... ears looked good. Yipee!

All of this brings me to our current state of infection. Last week, after the lovely sibling playtime in the backyard, I noticed that Miss Gracie was sporting some pretty glassy eyes. Within 24 hours, her trach secretions were sticky and yellow and she had a low grade fever. I called the new pulmonogist, but since her first appointment isn't until the 16th and he couldn't see her sooner, he wasn't even able to order a culture for me. I called her ENT and left a message at the end of the day. When I heard back the following morning, Gracie's secretions had morphed into colors that should only be produced by Shrek and the Incredible Hulk. I was concerned... especially since she's on an inhaled antibiotic (Tobi) on a rotating schedule 28 days on, 28 days off. She'd only been off 11 days. And remember, she'd also recently been on a course of Augmentin. So, this new (or revitalized) bug was unsettling.

Last Friday we saw the ENT... again. He took cultures, and prescribed Septra. Gracie had one dose on Friday evening and another dose on Saturday morning. On Saturday evening, we discovered that she was covered in a very red, splotchy rash from head to toe. On her scalp, behind and in her ears... torso, armpits... it was everywhere and it itched. Bad. My poor, happy little girl was a mess. Needless to say, we did not give the med again. I called the doctor, advised the service of her status and said that I would call again if she got worse. In the meantime, I asked if another antiobiotic could be prescribed so as not to have her get so much worse over the remainder of the weekend. He wanted to wait until Monday.

We gave her Benadryl, soothing baths, applied hydrocortisone and calamine. All of this offered little relief and she really wasn't that much better. Very itchy... everywhere. So, Monday morning I cancelled her appointment with her new dentist, called the ENT to discuss the antibiotic and the Pediatrician to discuss what I believed to be a brewing yeast infection... ugh.

We waited for a VERY long time in the sick room of her Pediatrician's office today and learned that yes, indeed, Gracie is the hostess of a healthy yeast infection - - this is a first. He instructed me how to treat it and assured me she'd be feeling much better in her nether region within 24 hours. He also suspected, just as I had started to, that the "allergic reaction" was not an allergy at all. The fact that she is continuing to get worse is indicative of some other infection that her body is trying to deal with. The antibiotic could have triggered the reaction, but since it's not been administered in over 48 hours and she's continuing to get worse, it's not likely an actual allergy.

Time will tell on all of this. We are waiting to discuss the lab results with the doctors, as the initial results, per the office assistant who called late this afternoon, were concerning and led to a discussion with infectious diseases. I should hear something first thing in the morning.