I don’t want to jinx anything but we are finally on the home stretch. Lena had her shunt internalization surgery this morning. Everything went very well and she is recovering in our room in the Pediatric ward. Yeah no PICU this surgery. She is still needs codeine for the pain and is sleeping soundly as I sit here in the hospital starbucks (finally found an internet connection). If all goes well we should be able to go home tomorrow or Monday morning. She’s such a fighter. It is amazing how fast she recovers from surgery.

So much has happened since I was last able to post. Not only was I not able to get a good connection but so much was happening and I have had to explain what has happened to her so many times, it’s exhausting. I just couldn’t bear to make my self type it out one more time. Over the last 5 weeks my little Lena has had four brain surgeries. One to externalize her shunt, one to replace a shunt that had been in too long, one to flush out an infected cyst and install another drain in to cyst and one to reinternalize her shunt. She came into the hospital very sick, got better, got very sick again, had seizures, countless IV pokes, countless blood tests, several CT scans, two EEGs and probably more traumatizing events that I can’t even remember.

We have had such an  excellent medical team since we have been here. Our surgeon, Venkatraman Sadanand, is amazing. He cares so much for our Little Lena. he took extra time in the OR to clean up her little head after all the surgeries and bandage changes so that it will be easier and more comfortable for her. I can tell when he looks at her that she is not just another patient, he really cares. He even made her abdominal dressing into the shape of a heart, so cute. I don’t know what we will do if he ever leaves this hospital, we may just have to move with him. He has always taken the time to talk to us, make sure we understand, listen to our concerns and suggestions. We are treated as part of her medical team. 

When we leave here in the next two days we will have been here for five weeks. Lena and I have not slept at home in five weeks. It will be good to go home, but weird at the same time. Sad to say but I think we are both a little used to being here.

I wasn’t afraid to take the girls home from the NICU. I had been with them every day, I knew them inside and out. I have to admit that I am a little nervous about going home this time. Lena’s white blood cell count was not perfect nor were her glucose and protein levels, but we had done everything and clinically she is healthy. We decided to internalize her because all cultures were negative and frankly during this entire hospital stay her lab work as never made any sense. We are hoping and praying that we are right in assuming that her cyst has given her a different “normal” that the rest of us and that the white blood cell levels are indeed a reaction to the drugs and the external ventricular drain. Cross your fingers for us! Reinfection is our greatest risk right now (and for the next three months).