Jinxed

I'm not sure if it's the shirt I'm wearing on these days that we keep getting admitted to the hospital, or if it's the fact that I started my last blog post bragging about 6 months of no admission to Texas Children's…..but SOMETHING jinxed us.  Because I'm sitting here typing this from the 12th floor of the West Tower at TCH.

I probably should get rid of this shirt...

For the past couple of weeks, Elise has been coughing.  I've brought her to the pediatrician 3 times in the past 4 weeks; yesterday would have been the 4th time, but as I was sitting in the waiting room at 9:30 am, I emailed her primary liver doc, Dr. Fishman, and our transplant coordinator the following message:

Good Morning,

Elise became very sick again overnight last night.  This morning she has fever of 101.7 and o2 is ranging 90-92%…and she is very tachicardic, pulse in the 160s-180s.  I am at the pedi right now waiting to see doc, although we won't be seeing her regular pedi b/c she is unavailable.  I called earlier wondering if maybe I should just bring her straight to TCH.  I am pretty sure she has some type of URI.  This has been going on for 3 weeks now, and her liver enzymes were already elevated at liver clinic on 10/29 after she had only been sick for a couple of days, so i'm obviously very concerned about the effects that this all may be having on her liver.  Please let me know your thoughts.

Thanks,

Erin Babin

I sent that email at 9:58 am.  I kid you not-  at 10:01 am, I received a call back…Dr. Fishman saying to leave the pedi's office and bring her straight into the TCH ER, where he said they would call ahead for her and have her put directly into a room. So we left the clinic and were on our way.  I already had a packed bag in the car, but I suspected we might end up at TCH at some point. 

Upon our arrival to the ER, we were taken directly back to a room, despite the mob of patients who had been triaged and placed back in the waiting room, halls, outside walkways, and elevator towers.  Before I was able to even sit down, I heard the words over intercom, "MED EVAL IN ROOM 14 STAT." Attending and resident ER docs headed into our room, immediately suspected a left pneumonia, and ordered fluids, telemetry, chest x-ray, IV Rocephin,  LOTS of labs including liver panel, CBC, BMP, EBV & CMV levels, blood cultures, urinalysis, stool sample, and viral studies for Adenovirus, Flu, RSV, and parovirus.  I asked that they contact liver team to advise them that Elise had arrived and to consult with their regarding the plan.  Shortly thereafter, "liver team"--and I mean the "real" liver team, came in with a resident and a couple of students to eyeball her, and, according to the nurse "add a bunch more labs that I've never even heard of." They also took the liberty of requesting a room for Elise on the 12th floor/ GI/liver transplant floor and admitted her under their primary service.  

"I hate the ER…."

"let's order every lab that we can…."  And there were 3 more tubes after this pic.  

While in the ER waiting on results of chest x-ray, her o2 saturation plummeted into the low 80s, and she started looking worse and worse…right before my eyes. I was --and I am-- so thankful that we were already at TCH receiving the best of the best care when this happened.  Within a couple of minutes, she was hooked up with a nasal cannula for supplemental oxygen, and she was able to get some rest.  Liver team came back in to take another look. They told me that their main concern is the obvious infection in her body which could be a threat to her new liver if not appropriately treated.  Her initial liver panel yesterday was not significantly changed from the panel drawn on 10/29/14; liver enzymes still elevated but no alarm for rejection at this point, which is a very good thing, and her liver function is great! 

collecting stickers...

Last night, we were informed that Elise is RSV+ (Respiratory Syncytial Virus)  UGHH!  She had RSV twice while waiting for transplant, and it was terrible then, so hearing RSV now--when she is immunosuppressed-- was scary.  Liver docs said all they can do for RSV is treat the symptoms-- the coughing, wheezing, fever, and low oxygen saturation. Antibiotics will treat the pneumonia. 

So now, it' 8:15 am on the morning of Day 2 here at TCH.  They've just drawn another round of labs, and I've just made my coffee...we'e ready to see liver team and find out the plan for the day.  Oh… speaking of labs…..when resident came in last night, I specifically asked what labs would be drawn in the morning, and she confirmed that a liver panel would be drawn every morning in addition to chemistries and tacro level.  Well…this morning….nurse comes to draw labs, and I ask what is being drawn to compare.  Well….much to my displeasure, but not to my surprise, that resident MD that I spoke with last night did not actually order a liver panel.  REALLY?????   We are on the liver/transplant floor, and this is a post-liver transplant patient!   I insisted that the nurse collect an extra couple of vials of blood while the needle was in her arm "in case we have some labs added on" so as to save Elise another stick. The nurse did take the extra vials of blood, and I followed up with that resident MD. She immediately added the liver panel and assured me that the attendings would be rounding with the team shortly, and I can address all my concerns with Sonny (Dr Harpovat.)  We really like Dr. Harpovat, and I'm very happy that he's on hospital service right now if it's not Dr. Fishman. 

breakfast time…   it's a brand new day!!