Since I'm running a little behind on this post, many of you probably already know this, but Elise received THE CALL on Saturday 3/23/13. When we left home that morning, it was to go to the zoo... we were not exactly expecting that we would bring Elise home from the zoo with a new liver!! Actually, I shouldn't say that; call it mother's intuition, but I put the hospital/ transplant bag in the van when we left home... "just in case." So like I said, we were at the zoo when our transplant coordinator called to tell us that they had an offer for a liver which appeared to be a perfect match for our sweet Elise. Obviously, we were overwhelmed with emotion...mainly anxiety... and we left the zoo in a hurry to drive three blocks to Texas Children's Hospital.
Upon arriving at the hospital, they expedited our admission through the ER, and we were led straight to the room which was awaiting us on the GI/liver floor. The nursing staff collected lots of blood for lab work, and a chest x-ray was done to rule out any illnesses which would preclude transplant. She was of course cleared for surgery fairly quickly; however, we still faced the wait for the surgeons to harvest the donor liver, transport it back to TCH, and examine it to ensure that it was indeed a perfect match and size for Elise and that it was in good condition. Surgery was tentatively scheduled for 6 pm. And so, we waited.
At 7:15 pm, the OR nurse and anesthesiologist came to take Elise to the OR. It was A GO!! I then handed our baby girl over to the transplant surgery team for the liver transplant, calling upon every defense mechanism I could to avoid the immense panic related to the lengthy list of potential life-threatening complications. As the OR nurse took Elise from me, I also handed her my cell phone number and a disposable camera as well as instructions to take a picture of Elise's old liver once it was removed. She said she would do whatever she could to get that picture for me. I just felt that I needed to see the organ that has caused such a crisis in our lives.
Shortly after 9:00 pm, I received the first update from the OR: "Dr. Goss has made the first incision; the operation itself has begun." I said to David, "I guess now there's really no turning back." David responded, "When they told us she had BA and that her liver was cirrhotic, there was no turning back; when she had that bleed 2 weeks ago, there was definitely no turning back. " Of course he was exactly right. At 10:35 pm, we received the next update: "the old liver is out, and the new liver is going in..." Wow. So, that was probably the point at which things started to hit me pretty hard. This surgeon had just taken out one Elise's most vital organs, and if this new liver didn't turn out to work, we could lose her. It was then not until 1:09 pm that we were informed that the surgeon was closing the incision and the operation would soon be over. Elise would be taken straight to the pediatric intensive care unit, where we would finally be reunited with her about an hour after surgery. While waiting to see Elise, her surgeon, Dr. Goss, came out to the waiting area and spoke with us. He informed us that the surgery went very well with no significant complications. I thanked him, and he said, "This is what we do."
Yesterday, on Sunday 3/24/13, at about 2:30 am, we saw Elise post-op for the first time post-op. She looked so little and helpless, although in reality, she was about 2-3 times her normal size as a result of fluid retention from surgery. She was intubated on a ventilator, meaning there was a tube inserted in her throat to breathe for her until she could do so on her own. She was also covered in monitors and had multiple peripheral IV lines as well as an arterial line which measured her blood pressure internally, a central line placed in her neck, a NG feeding tube, and a foley catheter. While it initially hurt me to see her like this, that feeling quickly began turning to triumph as Elise began to remind us who she was under that puffy skin.
Just 7 hours after coming out of surgery, Elise was obviously taking her own breaths, so the decision was made to remove the ventilator (breathing tube). The ventilator was taken away, and the rest of the day went fairly well without incident. Then this morning, less than 36 hours post-op, the liver and transplant teams rounded and made some additional surprising and exciting decisions. As the surgeon, Dr. Goss, walked into the room, Elise was screaming. Like music to my ears, Dr. Goss said, "Would someone get this kid a bottle!? Who has a bottle?! Let's let her eat...I bet that will fix her all up. The nurse quickly provided a small bottle which Elise latched onto while Dr. Goss continued his orders: "OK, she looks great...lets get rid of all this "stuff" and get her to the floor. To clarify, by "stuff" he apparently meant the foley catheter, the peripheral IVs, the NG feeding tube, oxygen, and heart monitor. I was stunned...but ecstatic! I asked whether he meant that she was really going to go to the regular floor today....and he said, "Yeah, why not! She's a rock star!" I reminded myself that Elise now has a perfect liver, matched and custom fit just for her by our amazing liver transplant team, led by this one Dr. Goss; HE is a rock star, in my opinion.
This afternoon, since arriving on the 12th floor at TCH--the GI/liver floor--Elise has been drinking bottles of formula, and late this afternoon, she wet her diaper for the first time!! For a short while, she gave us a little scare though, as she approached six hours without wetting any diapers at all. There was a short sighting of "momma bear" during the time that I felt there was a serious problem, and my concerns were not being addressed. Her catheter was removed at 10:00 am. Around 4:00 pm, she had still not wet any diapers at all, and she began refusing bottles and oral meds and appeared highly agitated. Her swelling appeared worse, and her abdomen was more distended. I told the nurse, who called the resident, who called the fellow, who said he was busy and asked her to call the resident again. STOP. WHAT? I was livid when I heard that the fellow was actually requesting the person one level behind him make a decision after that said person had just escalated the issue to him!! I went out in the hall and exclaimed, "Does that even make any sense??? You can go ahead and make that resident's day, but not at Elise's expense. I want the attending physician to see her within the next 10 minutes, or I am activating the RRT (Rapid Response Team), which is basically a patient/ family-powered "code" designed to alert medical staff and administration when a family feels the patient is getting worse and there is no action plan in place. Well, like magic, the attending MD came in and quickly ordered a "in and out catheter" to drain and measure urine. As soon as the word "catheter" was mentioned, Elise soaked her diaper!!! Potty training she go well now that I know the magic word.
Elise is now resting comfortably. She is receiving pain meds as needed as well as multiple other meds, some of which she will be on indefinitely. Her primary attending hepatologist, Dr. Fishman, came to visit her this afternoon, although he is not on hospital service this week. He's obviously very pleased her her progress and expects that she could conceivable discharge home by this Friday 3/29/13, barring any major complications of course! What a miracle have received this Holy Week, and the blessings seem to continue moment after moment. This Easter we are so deeply grateful for the unselfish decision one family made in their grief and darkest moments, to donate or donor angel's organs, thereby giving Elise "new life"-- her "gift of life!"
Please always keep our donor angel and his or her family in your prayers!!
Thank you all for love and support you all have shown to Elise and our family! We are overwhelmed and appreciate it all so much!!
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