Hello friends… it's been a long week. Let me give you a review. We have routine news, bad news, and good news to share! What else would one expect from "Liverland?"
Last Thursday January 29, Elise underwent her scheduled operation for adenoidectomy and ear tubes-reinsertion.
Last Thursday January 29, Elise underwent her scheduled operation for adenoidectomy and ear tubes-reinsertion.
The only little problem we had was separating her from me in the pre-op area. But I quickly suggested that they allow me to scrub in and go back with her to the OR, so as to reduce the trauma [for both of us.]
My husband, David, being an anesthesia provider, can't believe that they allow me to do this, but they do…..this is the second time in a row. Thankfully, we have been having very reasonable anesthesiologists, who trust me not to "freak out" when Elise goes limp in my arms. Now, let me tell you….there is a HUGE difference between your child sleeping in your arms and your child falling unconscious in your arms. But nonetheless, I know what to expect, as I have done it before and acquainted myself with the process of anesthesia, and it is MUCH less traumatic for her to fall asleep this way than in a cold room with strangers in masks after screaming for several minutes as she walks down the hall.
I digress….Elise did GREAT with the surgery… so great, in fact, that the ENT and liver team decided to discharge her home with pain meds and 3 days of antibiotics rather than keeping her inpatient overnight as originally planned. I personally couldn't have been happier to bring her home. She did struggle with pain for a couple of days, but nothing unmanageable.
I digress….Elise did GREAT with the surgery… so great, in fact, that the ENT and liver team decided to discharge her home with pain meds and 3 days of antibiotics rather than keeping her inpatient overnight as originally planned. I personally couldn't have been happier to bring her home. She did struggle with pain for a couple of days, but nothing unmanageable.
This past Saturday, approximately 48 hours post-op, I noticed she started coughing. I tried to rationalize, telling myself she just had her adenoids removed, and her throat is probably scratchy and irritated. Then on Sunday, I became a little more concerned, as her cough became worse, and she spiked a fever of 101.2. I decided that this warranted a trip to the pediatrician in the morning.
On Monday morning, Feb 2, I took her to see her pediatrician. Her o2 saturation was 97% at that time. She was coughing quite a bit, retracting, and breathing very fast, but after an albuterol breathing treatment, her symptoms improved, so we were sent home. I asked whether antibiotics might be warranted, questioning whether this might be--or might develop into- pneumonia, as we have experienced several times in the past. But…you know…doctors are under pressure to avoid ordering "unnecessary tests" and to also avoid antibiotics whenever possible. And so….we went home and started up breathing treatments three times/day.
Yesterday, the coughing was worse, but she didn't really have a temperature over 99-100, and she didn't appear to be in distress…..until later in the evening. When I was getting her ready for her bath, I noticed she was breathing fast--approx 38-40 times/minute, retracting, and when I checked her o2 saturation, it was ranging 88-92%. I gave her a breathing treatment, and it improved to about 94%. I really debated at that point about whether or not to bring her to the ER right then and there. I decided to just increase breathing treatments to every 3-4 hours over night, checking SATS frequently, and try to wait and bring her in to see the doctor again this morning. So that's what I did. I checked her and gave her a treatment at midnight, and again at 3:30 am this morning.
At 8:00 am, I spoke to Elise's pediatrician as I was on the way to her office. When I gave her a run down of her vitals overnight and indicated that her temp this morning was 100.3, she told me to head straight to ER at TCH. She said she would notify liver team that I was on the way with Elise, in respiratory distress, and that I should not have to wait to be seen. And I didn't. I never even signed in to the ER. Come to think of it, I don't think I ever signed a "consent to treat." I'm sure I'll get a phone call about this tomorrow.
Anyway…chest x-ray and labs were ordered quickly after we met with the first set of doctors- the ER resident, fellow, and attending MDs. Liver team quickly involved themselves in Elise's plan of care, and they consulted pulmonology as well, since Elise has been followed closely by pulmonology since last year when she had several bouts of pneumonia and a case of RSV. The ER resident came in shortly after the x-ray and stated, "the x-ray looks clear." That didn't sound right. I asked about labs. At that point, the only thing back was her CBC which showed an elevated white blood cell count at 15,000. I asked, "well, that WBC looks like an infection brewing….but your'e saying there's no pneumonia or bronchitis, etc?" She responded with comments that pulmology should be on their way down, and they'll give their opinion. Good. Because I could hardly wait to hear it.
The pulmonologists did see her shortly thereafter. They reviewed her x-ray and examined her, and without a doubt, they confirmed that Elise has "full blown left-side pneumonia." They indicated that they could hear it on her left side, and after reviewing her history, suggested this is likely a bacterial aspiration pneumonia resulting from anesthesia during her recent surgery. They spoke with liver team, and then ordered a round of IV Rocephin antibiotic to start treating the pneumonia.
The only question that remained was whether to keep Elise inpatient or discharge her to treat the pneumonia at home. The ER attending deferred to Pulmonology attending, who deferred to liver team attending. I asked, "Well, who is the liver team attending on service right now?" I was told, "Dr. Doug Fishman. He said Elise is well-known to him." To which I replied, "LOL, you think? He's coming down here to see her and talk to me, right.?" "Yes, I believe he is," said ER doc.
I could hear Dr. Fishman in the hall several minutes before he actually came into the room. And then there was "the knock." I can't count the number of times I've heard that knock during liver clinic appts and hospitalizations over the last 3 years. That knock actually makes me happy though, because I know that things are under control when he's around.
And so, Dr. Fishman examined Elise, and then asked whether I had seen her liver panel. Well, as a matter of fact, I had. He assumed as much…he knows I'm all up on her numbers hot off the press.
He couldn't help but grin. That's right. Her current liver panel actually warrants a SMILE! SHE"S BACK AT BASELINE! Even in the face of pneumonia!
AST 68, ALT 61, GGT 40.
Which brings me to the rest of my discussion with Dr. Fishman. You know, I have already had a consult/ liver clinic appt on his books scheduled for next week, Feb 11, to discuss in detail the new diagnosis of DeNovo Autoimmune Hepatitis (AIH.) He acknowledged that upcoming appt, then offered to start the discussion now, while we were face-to-face.
Bottom line… Dr. Fishman says he is actually no longer ready to commit to the diagnosis of DeNovo AIH. He said that he has not started meds yet to target AIH because it may be "something to watch for but not necessarily diagnose" at this point. We reviewed her biopsy report together, citing the fact that there is absolutely no evidence of any fibrosis or cirrhosis, or any damage to her liver whatsoever. There was 1 single plasma cell identified, but Dr. Fishman says that in a case of true DeNovo AIH, he would expect to see a whole host of plasma cells. The ANA profile, he said, pointed to DeNovo AIH, but it is more like "consistent with," and not necessarily a conclusive. In any case, he says, "in a Dr. Shepard-ism," "MUCH better to have a little touch of rejection or Autoimmune Hepatitis than to have a real post-transplant complication…. like post-tranpslant lymphoproliferative disorder (PTLD,) which would be a risk if we start throwing steroids and increased immunosupressive therapy at Elise to target autoimmune hepatitis."
I can't even tell you how much better I feel after this conversation with Elise's liver doc, Dr. Fishman. I just wish it wouldn't have taken an entire day in the ER fighting pneumonia to get this face-time. But now I feel even better prepared for our appointment with him next week. I won't be so much like a "deer in the headlights" going into it.
Tonight, we are back home as a family. Elise was discharged home after receiving IV antibiotics in the ER, and she is to continue oral Cefdinir antibiotics x 14 days at home. We will see her pediatrician tomorrow morning, who will give her an injection of an additional dose of Rocephin, and then we will be following up with pulmonology and liver clinic next week.
On Friday, Elise's Grammie & Paw will join us to attend the Houston Rockets' basketball game, where Ethan and his TOT basketball team will perform for the pre-game show. I believe he will be receiving his first trophy, and he couldn't be more excited. I couldn't be more proud.
I just couldn't be a happier mommy. We have our challenges, but doesn't everyone? As they say, "what doesn't kill you makes you stronger." And I know for fact that everything we battle with Elise makes me a better mom, a better social worker, and a better wife.
