As much as I hate when my son, Ethan, is sick, at least I can assume it's just normal "baby stuff." Not so in Elise's case. This past Saturday, Elise woke up with a fever of 103.2. She was not acting like herself, and I thought she appeared a little jaundiced. I brought her to the pediatrician, as I was previously advised to do prior to calling the hospital, to look for any "normal baby" explanations for the fever. Her regular pedicatrician was not in on the weekend, so we saw someone else, and this covering pediatrician stated that Elise had an ear infection and sent us on our way with a quick script for an antibiotic. As the day went on, Elise's condition seemed to get worse; her fever would not really break with Tylenol, her skin was clearly yellow, and she seemed in pain- grunting, breathing fast, and screaming every time I would put her down.
At the risk of possibly seeming neurotic, I called the liver team at Texas Children's Hospital and brought her in to the ER.
Almost immdiately, I was thanking God that I did follow my intincts; all of her liver enzymes were double and triple their baseline for her, and her liver function tests were significantly decreasedr. An ultrasound of her liver showed dilation of her biliary ducts and enlargement of her liver. She was admitted to the hospital to be treated for a seriousl liver infection, Cholangitis. Obviously, this was much more than just an ear infection.
On Sunday, things got a little worse, as we were told that she was possibly septic; bacteria was found in her blood, and her vitals were consistently elevated. I spoke with several liver doctors as well as the director of the TCH liver center and was told that all evidence indicates that her liver has incurred further damage. They also said that it appears there is very little "reserve" left in her native liver, so time is becoming more and more critical. They indicated that they were requesting an increase in her PELD score to take it from 28 to 32, placing her at very high priority for a donor liver. However, due to the malrotation of her intestines and transversed organs (related to her liver disease), she needs the left lateral lobe of a liver, which will take longer to find. Considering all this, the team informed me that they were now beginning to entertain the thought of testing for living donors.....just so that we might have a "back up plan" in case time runs out and there is no other choice. Of course, I completely agree with this plan, and I will be the first one tested to determine whether I am a viable match to be a living donor. I know that I am the same bllood type as her, A+, so now further testing will be done at St Luke's hospital.
A "living donor" transplant means that, assuming they find a willing live person who matches Elise's blood and tissue type. they would remove a small percentage of the donor person's liver and place it into Elise. As previously stated, this would be a last resort, although the prognosis would be at least as good if not better.
I can certainly say that the last two days here at the hospital have brought "momma bear" out of me. I have learned time and time again that I am Elise's best advocate, the one who knows her best. I've also learned to challenge and question anything and everything that doesn't seem 100% correct, as mistakes DO happen. I won't go into all the nitty gritty, but suffice it to say that a resident MD here made an order yesterday which could have potentially caused Elise to be inelligible to receive a tranplant if an organ had become available. This was based on a completely inaccurate and unresponsible assessment of her, noting that she was to be on "contact and droplet precautions due to suspected respiratory infection or virus." I am not a doctor, but I immediately questioned this. as her oxygen saturation was perfect. her viral studies were all negative, and she had no symptoms of a respiratory infection...other than a nasal sound that is part of her baseline presentation when she is upset or worked up in any way. I could have explained this if he has bothered to take a history on it before running off to make his orders. Anyway, I demanded that the attending physician, the supervising infectious disease doctor, come to evaluate her. She was thoroughly assessed from a respiratory standpoint, as I requested, and the situation was rectified. All special precautions were promptly removed, and it was documented in her chart that she is clear for surgery should it become necessary.
So, today she is scheduled to go down to interventional radiology for placement of a central line, a peripherally inserted central catheter (PICC) which will allow her to go home on 21 days of IV antibiotics once she is stable; this is the normal protocol for treatment of the Cholangitis liver infection. Her doctors are anticipating that she will be ready to go home by the end of this week.
Once again, thank you all for the continued prayers, love, and support. I know that this is all part of God's plan, and I have faith that Elise come through all of this just fine, hopefully with a brand new, healthy, left lateral lobe of a liver very soon!!! :-)
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