June 15, 2011
This past month has been a flurry of busyness. Josie’s last MRI showed that there was a slight improvement and therefore they made the decision to give her a break from one of the chemo drugs that inhibits healing. This was done so that Josie could have two surgical procedures done; the first surgery was the placement of a g-tube (or button) for feeding along with the Nissen procedure that would help stop her reflux. The second surgery was to put her bone flap back into her skull. With these plans in place, we started a laundry list of doctor appointments and pre-operation “to-do’s” as well as the typical chemo appointments at the clinic and various therapy appointments.
The first surgery for the g-tube was on May 23rd – all went well with the surgery and the doctor was done in about 2 hours. We were looking forward to being able to see Josie without the tape on her face and also for a reprieve from her reflux. The Nissen is a procedure where they take the top corner of the stomach and wrap it around the esophagus and then sew it to itself. This allows food to go down if eating by mouth, but then the food cannot come back up. We had been told many times prior to this surgery that Josie would probably never be able to throw up, reflux or even burp once she had the Nissen procedure. The day after surgery, they started giving Josie her formula through her g-tube. To our surprise and pretty much everyone else’s surprise, Josie refluxed through her Nissen. We thought that perhaps they had started her with too much in her stomach and that the sheer force of the volume is what brought it back up. We were okay with that concept…at first. The second day after surgery, Josie continued to reflux through her Nissen and then they kept us there for 4 more days trying to figure out how to keep food in Josie’s belly. They finally sent us home after 6 days at the hospital with a slow program for how to increase Josie’s food intake. We left on a Sunday and by Monday, we were calling the doctor’s office because Josie was not only refluxing formula, but medication and doing so in large quantities. On Wednesday we took her to have an upper GI done so that they could check the Nissen and the g-tube sight. The upper GI showed that the Nissen did in fact fail – they could not tell precisely why, but they could tell that she was able to get reflux up the esophagus and that shouldn’t happen with a Nissen. After much discussion, the decision was made to change Josie’s g-tube to a gj-tube, BUT they could not and would not change it until her g-tube sight had healed for at least 3 weeks or more. Therefore…Josie once again was given an NJ tube – which is the same tube she had prior to surgery and now has tape on her face again. We were so disappointed. We were right back to where we started from, except now she had a new piece of equipment extending out of her belly that we couldn’t use.
Even with the new tube in her nose, her reflux is really bad and Marc and I cannot get a full night’s sleep because she is coughing, gagging and throwing up.
Josie’s skull surgery was on June 8 and both of us are looking forward to getting over this next hump in the journey. The surgeon wasn’t sure how the bone flap would fit into the hole in Josie’s skull, but he had multiple routes that he could take, and we were comfortable with all of them. The surgery was targeted to start at 8:30am and she was off to the OR right on time, with the anticipated timeframe of 2 hours for this surgery. At 10:15, one of the nurses came out to give us an update and said that they had just got her positioned and that the surgeon took great care to make sure she was exactly where he needed her to be. That being the case, they had only started the surgery 10 minutes prior to the update, but already things were looking good. The bone flap was almost the exact size of the existing hole; in fact, he had to trim it a little to make it fit just right. At a little after noon, we got the word that all went well and she was in recovery. We all let out a sigh of relief! Josie was finally being kind to the surgical team and took it easy on them!
We were sent home after only 2 days post-op – record time for any of Josie’s hospital stays. Marc kept on saying “okay, when’s the hammer going to drop”, because it seemed to be going a little too well for a Josie situation.
He wasn’t too far off…we came home on Friday and then on Sunday, Josie started running a fever (took her temp 4 times!) and she had a funny rash on her belly. Since she is a chemo kid, we are supposed to call in if she has a temp over 100, she was at 101 and 102. We were told to take her right in to the ER. When we got there, they moved us right in – no waiting in the waiting room for us, this was serious. We have been in the hospital ever since and without any real answers. They took blood cultures and nothing has grown to indicate that there is an infection. Josie’s torso/back and diaper area started out screaming red and looked like a bad sunburn – the kind where you touch your skin and your finger leaves a white mark because it is so red. Her fever is gone and she is on some pretty high doses of antibiotics. We were hoping to go home today (Thursday), but Josie has started having diarrhea and her blood counts are down. Josie is acting much better and has seemed herself for the last 2 days and the rash on her belly is looking better – not so red. This is a hospital stay we were not anticipating, but the doctor was and is so glad that we got her in when we did.
We are so tired, we feel like we need a break, but know that with Josie there may not be much of a break. She is so worth it though – sure we would love it if she didn’t have cancer, but this is her journey and there is a purpose so much bigger than we can see. We rejoice at the littlest things and savor them so much more because of this journey. She has started sitting up on her own – she wobbles because her left side is not as strong and she can’t catch herself, but she is learning to compensate. She has two teeth – one is all the way through and one is still trying to break through. Her left arm surprises us and she will make it move when we least expect it. The small things, but huge for Josie and for that we are content.
Blessings,
Marc & Darcia
