Post-Op Update

First, thank you so much to everyone for all the love, support and prayers. We truly appreciate, as always, all the blog comments, text messages, voicemails and FB messages... they help give us strength.

Gracie's surgery went on as scheduled Wednesday afternoon. The surgery itself was much more difficult and took longer than anticipated. Though it came as no surprise to us, they found getting a new central line placed to be quite challenging. It took three attempts to get it done. Next came the actual surgery itself, which was, to quote her surgeon directly, "... a very, very difficult case." Dr. Lam and his team worked tirelessly to complete the surgery laparoscopically, and for that we are incredibly grateful. It means a much easier recovery for Gracie and far less risk of infection.

As it turned out, Gracie's liver and stomach were completely fused together by adhesions, so before he could actually begin repairing the hernia and re-doing her fundoplication, he had to separate the liver and stomach. Once he did that, he "took down" the hernia and, interestingly enough, found her fundo hadn't slipped, rather was fully intact and shoved up into her chest. He reinforced the fundo, all the while, the surgical assistant holding her liver up with the probes in order to keep his line of vision clear for working. He and his team were exhausted... and he wasn't ashamed to admit it. She was finally rolled out of the OR around 6pm... about three and a half hours after they started.

Our only objective has been to keep Gracie's pain managed and, of course, carefully monitor her vital signs. Her little body has been put through the ringer from this major surgery - not to mention the last two months - and we just want her to rest and heal. Unfortunately, she had tremendous breakthrough pain and, for the first day, needed hourly morphine to stay comfortable. She was also on Ativan, Tylenol and Benadryl (to control the itching from the morphine). It was absolutely heartbreaking to watch her writhe in such agonizing pain. She required a blood transfusion on Thursday. Her chest X-ray mid-day Thursday looked "fuzzy" and today's looked even "fuzzier." She retained a lot of fluid and required an extra dose of IV lasix to try and get rid of it (aside from the twice daily IV lasix she is already on). She required IV albumin because that is low (which has been her trend her whole life, regardless of her nutritional status) as is her prealbumin. She has been running a constant fever of 102 without Tylenol on board. Her CRP and white count are high... the CRP is expected to be high following surgery, however, hers was exceptionally higher today. All of this is pointing toward another respiratory infection. What's so unsettling is that she was so well covered with two broad-spectrum antibiotics for the last ten days. Based on preliminary culture results, they added a new antibiotic today and will make adjustments once the culture has had another 48 hours to grow.

With all that she has going on it becomes more difficult to assess her pain vs. discomfort from what might be brewing. Now that she is 48 hours post-op, we are trying to stagger some of her meds to keep her relaxed and pain free, yet at the same time, not wanting to snow her to the point that we can't really tell how she is. It's a fine balance and exhausting, especially today when she had a day nurse who insisted on questioning both John and me on every thing we asked for and how we're doing things. She was nice enough, but not a great team player and I have already asked the charge nurse that today's nurse not be assigned to Gracie again. (We have only done that two other times in Gracie's entire hospitalization history.) Poor rapport with the nurse just made an already difficult day more challenging. Thankfully, tonight she has Katie, a great nurse, who has taken care of her several times before and whom I was very relieved to see at 7:30 this evening.

Tomorrow they will start clear fluids on a drip through her suspended G-tube at a rate of 10cc an hour. I am so anxious about this as she has been gagging, retching and super junky with her trach secretions all day. I am trying not to pass any judgment about the success of the surgery - - or the new trach size - - until more time has passed and she has a chance to heal, but it's already concerning that her oral and trach secretion production is relatively the same when the docs expected that the combination of these two things should result in a vast improvement. I will be patient, though and let time tell. Please wish our Little Miss luck as she resumes fluids in her tummy for the first time since total gut rest.