I have learned that my hospital breaking point is 10 days. On day 10, I begin to lose my grip on "tough advocate mom" and slip into "weepy sad mom". It happened earlier this month with chemo - Day 10 was NG tube day, and I cried a river about it for no real reason. This time, Day 10 hit hard and I was a mess this morning. I am tired, sore and sick of the beeping machines, vitals every 4 hours, nurses all night and of Scarlett being trapped in a bed. Cabin fever is hitting hard. Thankfully, Chris had today off and was here all night and day, and he helped to keep me from falling apart. He's the best.
We started our morning with the little one asserting her independence and yanking her NG tube out. It surprised her and she cried for a minute, but then she was all smiles - so proud of herself! I was happy because we want it gone ASAP, but there is one problem: medications. She is on high doses of electrolyte replacements that are so gross and such high volume doses that there is just no way to get them into her reliably without the tube. When they tried to replace the tube right away, we asked that it be done while she was under anesthesia. Now that her CSF is staying in her body, all the electrolytes should equalize and we can eliminate the medications and the tube.
Her MRI was delayed almost 2 hours. We took her down and talked to her as they gave her Propofol, which put her right to sleep. I haven't heard about the MRI results yet...I'm taking a "no news is good news" approach for tonight.
Radiology escorted her straight to the operating room. There, they implanted a brand new shunt (VP non-programmable, for those of you with experience) just behind the old site. While they were threading the shunt tubing down her chest and abdomen, they ran across a complication that we never anticipated: the previous infection draining from her CSF into her abdomen caused some damage to her bladder. It was distended and full (even though she had been producing plenty of wet diapers) and slightly adhered to the inside of her abdominal cavity. The neurosurgeon called in the general surgeon (brain guys don't mess around with abdominal issues) to take a peek with the endoscope to check for other problems, and to repair the damage.
We were pretty confused when the neurosurgeon began explaining this in the waiting room. We were not expecting any abdominal issues, though it makes sense that the infection would have effects. However, they feel it is resolved, that she should have no further complications and that it should not extend our hospital stay. That's what they all say...
Once we saw her in the post-op room, we were reassured by how good she looked. Despite having a few extra holes than we expected to see, she seems to feel fine. She was thirsty and drank some glucose water (sugar - her favorite!). She was crying (good) and sucking her pacifier (very good) and even smiled for me (the best!) We found out that she got her way once more in surgery, too: they could not get a second IV ("just in case she needs it" in addition to her port) even with the anesthesia. We had been trying to avoid it since the last one failed a few days ago, and she won!
Luckily, the long procedures meant we had a break from the tiny room and hospital walls. Chris and I went to lunch at the Stanford mall across the street, wandered through the stores, had our first Pinkberry frozen yogurt, and generally took a deep breath. We needed it.
Tomorrow will probably be very busy with visits from all the medical teams to discuss the events of today. I will be awake early for rounds (around 7 for Neurosurgery). I like to be ready for them, ready to listen and ready to ask questions. On to Day 11.