Lung Surgery

As previously mentioned Clara had her lung surgery on Monday. She also had a Hickman line placed to replace her PICC line (exactly like the wikipedia picture). This was a lung lobe resection of her bottom right lobe. That means that the entire bottom lobe of her right lung was removed. There are two lobes in the left lung and three in her right. Ideally, there will be no really differences in her ability to breathe and perform sports with the missing lobe. Since she is young, she should adjust to the missing lobe well as the rest of the lung compensates. The image below depicts her procedure (though she had an infection rather than cancer) and the website describes well information about a lung lobe resection as well as where the scar is for this procedure.

The procedure didn't go exactly perfectly. The surgery was scheduled for 2 hours (the anesthesiologist thought it would be 3) but ended up being 5 hours long. Apparently the lung was very inflamed and "sticky" which made it difficult to remove. We found out later that the infection was described as coral-like (which seems a bad texture to have in your lung). During the surgery a bit of fluid moved from the right lung to the left lung (the surgery was performed with her on her side) and it clogged her breathing tube. The anesthesiologist initially thought Clara's O2 saturation dropped to ~50% for around 10 minutes. There was some concern that this could have damaged her kidneys and maybe brain. We later found out from the operative note that it was only 2.5 minutes (time must run slower in the OR) and that she wasn't as concerned. Nevertheless, the anesthesiologist was happy that everything returned to pre-surgery status (peeing and playing).

Clara on Monday after her surgery.

After the surgery, Clara was kept intibated and sedated until Tuesday so that she could have some rest to let the body start to recover. I imagine partly because it is difficult to keep a baby still and partly because they were a little worried about extibation. They extibated on Tuesday a little early when she was demonstrating correct pressure around a leak in the breathing tube (better than the respiratory therapists had expected).

They moved us down to the oncology unit on Wednesday evening. This was great because we could actually sleep in the room which I did along with Brooke on Wednesday night. Clara actually slept pretty well and returned to her normal eating schedule. By normal feeding schedule she was able to have ~120ml of milk through her NG tube every 3 hours.

Clara on Wednesday night.

On Thanksgiving day they took out her drainage tube (this was used to drain and fluid from her surgery site). She had been doing well with it and wasn't really draining anymore. What is great about this is that once the tube is out we could finally pick her up again. She loved getting to move around again. She ended up with an air bubble under her skin from the surgery. There isn't a problem with this and it will slowly go away but it is freaky when we pick her up and you hear a squishy sound and feel rice crispies under her skin.

Clara on Thanksgiving!

Thursday evening we removed Clara's NG tube. This was more for Brooke so that she wouldn't be tempted to use it to feed her. We are trying to move away from NG feed and have permission to "starve" her until she gets used to eating from the breast again (and maybe will try a bottle). She has gotten so used to the NG feeds that she really only thinks of feeding at the breast as more of an immediate satiation but doesn't eat until she is full. I think that she has associated just short feeds with suddenly getting full. And she hasn't touched a bottle since really very early on. Of course, if she loses too much weight we'll have to reinstate the NG tube.

Clara today!

All of this culminates in us being able to go home TODAY! This is a mixed blessing in that it would be much better if she were able to get a stem cell transplant as soon as possible but will help us regain some sanity after more than three months in the hospital. We have to wait for the fungal infection to go away before transplant so we will be waiting until the beginning of the year. Hopefully this gives the anti-fungals time to kill everything. We are most worried about the nodule of fungus on her kidney so this will be the big thing to watch for. In the interim she will be getting some low doses of chemotherapy to keep her bone marrow relatively empty. Again, this isn't the ideal scenario, but it is the only real scenario because the infection would take over her if we tried the transplant now.

We will be having to come in every day (except Sunday) for her to receive some medications (right now one of her anti-fungals but soon the chemos as well). The anti-fungal takes 2 hours to run plus she will be getting labs and such so we are anticipating 4 hours per day in the hospital. This doesn't sound too bad to us because we have gotten so used to being here. Of course, we need to get Brooke a car ASAP so that she can take care of these errands while I am able to actually do some work. Either way, we are looking forward to some normal time with her at home.