So much is still up in the air this Monday night

My update on things here is really in a sense still no update. On a good note, the supposed virus seems to have crested and in that aspect, Gwendolyn’s getting better.

On the other hand, now that those symptoms are subsiding a little, it has brought back to light the issues Gwendolyn was having initially that facilitated Heather setting up our appointment with the occupational therapist last week. Namely, Gwen still has regular problems with her respiratory system, especially breathing while she is feeding. Right now, the plan seems to be that we continue with her stay here until those issues get resolved. While the virus exasperated the problem initially, even when she’s virus free the doctors feel that she just isn't getting the correct amount of oxygen mix in her blood due to those breathing issues… especially when she feeds.

Right now, there seems to be a difference of opinion between the Neurologist and the Pulmonologist as to the next course of action.

Before I dive into that, I think I need to explain the item that’s currently causing the discussion. When Gwendolyn went for her MRI earlier this week, it confirmed the presence of a Chiari Malformation. Honestly, it wasn’t much of a revelation because the majority of kids with spina bifida have it to various degrees. The part that’s difficult to gauge is exactly how much effect it has on each child. Some exhibit little or no outward effects and in severe cases, some can’t even breath regularly on their own.

In the simplest of terms, a Chiari Malformation is basically a tethered spinal cord. See, your spinal cord is supposed to be free-flowing in spinal fluid. When your spinal cord is tethered due to the spina bifida, it becomes adhered to the spine itself. This causes the spinal cord to pull down on the bottom part of the brain, called the cerebellum. Then the cerebellum kind of descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine. The cerebellum is the portion of the brain that controls your sensory and motor control, such as eating and breathing patterns, so it’s very relevant in this discussion.

Now, back to our regularly scheduled blog… The Neurologist feels that the risk of doing a surgery on the cerebellum to free it from the spinal cord far outweighs the possible reward that might be gained by it. Essentially, he feels that another brain surgery might not even relieve her symptoms while at the same time opening the risk for possible post-operation infection. He basically thinks that it is too much risk for a solution that might not present itself.

On the other side of the spectrum, the Pulmonologist feels that Chiari Malformation is undoubtedly the cause of all her issues. Her thought is that it is the only logical explanation left to explain things. She thinks that Gwen needs to have the surgery and do so soon or she could run into even more serious breathing issues eventually.

Because of the difference of opinion, the Pulmonologist is going to begin running a series of tests starting tomorrow and leading through the majority of this week. They hope to better gauge exactly where she's at in terms of her breathing and eating. After a few days of gathering that information, they'll confer to review the results and try to make a decision on whether or not they should continue with the surgery to correct her Chiari defect or not. Again, there’s a chance they do the surgery and it honestly isn’t the cause for her issues, which opens a whole new series of concerns in terms of figuring out exactly what the problem really is.

In the mean time, the occupational therapist came and observed Gwen’s last feeding. For those of you that followed my blog when we were admitted back into the hospital, this is the initial meeting we had scheduled on Thursday that went terribly wrong and was cut short. Anyway, this time we were able to finish the feeding observation. After some research and a consult with other doctors, the O.T.’s recommendation was that Gwen needs to be put on a feeding tube. She said that she needs some feeding intervention or she risks harm should the breast milk seep into her lungs accidentally during a feeding. By staring on a course of feeding treatment now, it wouldn’t do anything but confuse Gwen. She doesn’t want to start something only to alter it based on what type of solution is decided on between the Neurologist and the Pulmonologist at the end of the week.

So, I sit here in a hospital room watching my daughter receive her first meal via feeding tube praying that it doesn’t become a long-term solution. At the very least, the tube is a tremendous plus for her in the here-and-now. The struggle Gwen had eating before wasn’t healthy. Now at least it isn’t such a task for her to get nourishment.

In any case, our family is still trucking along. Braelyn is still doing well hanging with grandma and has a pediatrician mid-week to check her growth. Of course, she’s no longer in preemie clothes and is instead solidly in newborn cloths (as you can see from the picture above) so I don’t have any fears there. Heather and I are doing well under the circumstances. I’ve become a little too familiar with this room but luckily I have the ability to sleep about anywhere so that’s a plus. Needless to say, it’s stressful for all the Castellanos but we’ve had our share of that this last month and come through just fine so we’ll be okay after this road block.

Well, sorry again for such a lengthy blog entry. Unfortunately, I’ve had a lot of medical jargon to explain these last couple of days… hopefully they’ll be shorter in the future because I’ll have less to share.