Friday, November 4, 2011

November 4, 2011 - Day 34



4 months, 4 weeks, 2 days since diagnosis
day #43 of current hospital stay

Things continue to go well. We have decided to put in a G-tube. This will take the pressure off of all of us in regards to meds and eating. Riker will go home on a significant amount of meds and going at her with a dozen syringes a day is not helping her oral aversions. With a G-tube, we won't need to worry about her eating or getting the meds she needs to stay healthy. It will have to stay in for a year, but, I imagine she'll be fine after that and we can take it out. This, too, shall pass.

I have spoke to the feeding team and they think I'm doing exactly what I need to/should be as far as eating goes. She'll eat eventually - we're not pushing it. At this point, we're trying to make eating fun and are encouraging self feeding. I don't think I'll push the bottle on her, at all. As her coordination improves, there will be cups and solid food. She'll eat eventually.

I've started to troubleshoot the formula problem. Last time we tried to give her some, she couldn't keep it down. We've started fortifying again to see if she still has an averse reaction. So far it's going ok. If she continues to do well, I will start cutting her breast milk with formula. I haven't decided by how much - it depends on how much I have after doing an inventory.

If all goes accordingly, we should have the G-tube in on Monday. After a few days to heal and make sure all systems are go, we'll be discharged. OMG discharged? I wish I could say I was looking forward to it. It took about 5 weeks to get used to being here. Now I'm used to being here. Another change is not going to be easy. Being away from teams of medical staff is not going to be easy. We'll be close to the hospital, though. We'll be having frequent visits to clinic and all her vitals will be monitored closely. It will be ok. This is not the most difficult part of our journey.

As with everything, I just keep telling myself that it will be ok....repeating it over and over... It seems to have worked so far. Everything is ok :)

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