27 Days and Counting

It's hard to believe that just over a month ago Adam & I walked into Mac with Logan ready to have an ultra-sound and surgery done for the pyloric stenosis, and since then we've been here at Mac (with the exception of going home for  aweek in that time). We have actually been living at the hospital for 27 days! I have been sharing this tiny hospital room with Logan for almost 4 weeks total. Adam has been driving back and forth to work and back here, spending money on food, gas & parking, our kids are with our parents, our crazy dog being taken care of by the Keizer clan, we have had visitors, emails, phone calls, meals on our doorstep & help around the house for a month now. Adam & I have had to make decisions & go through things we never thought we'd imagine, things that we never wish upon any of you to have to experience. There have been moments of weakness and emotions, moments of laughter, moments of fear and worries and everything else you can imagine. Yet through it all we've been surrounded by the love & support of our family & friends and most of all God who is holding us through all of it.

Today, I thought to myself, what is the Lord trying to teach me in all of this? I am trying to keep a positive perspective through this trial. I had another couple of wonderful visits today in which I had the opportunity to express how I feel and talk about our situation, and they were able to give me some much appreciated thoughts & advice. After those lovely ladies left and I sat alone here with Logan in my arms, I decided to pray. To pray harder then I ever have before for patience, trust, understanding and for answers. Even if they are not the answers I was hoping for, I just needed to hear some answers. To know where to go from here. To have an idea of when I can pick up my other children & go home. Believe it or not you start to go a little crazy being stuck here away from your kids & the normalities of life for this long. I sometimes just want to give up, mostly for the fact that I'm tired emotionally & mentally, but even though I feel this way I know that the Lord will continue to pick me up and carry me on through this. This is not a time to just give up and walk away. My son needs me. I need to be his advocate and get through this holding his hand. And I feel like we are getting closer to knowing the answers by the day!

Cue the doctors! Not long after all this Dr. Zachos and our team of GI doctors came in the room to inform me that those biopsy's that they took from Logan's scope last week just came in today. It turns out that under a scope they were able to see that Logan has a protein intolerance called "Eosinophilic Esophagitis". Eosinophilic esophagitis is an allergic inflammatory condition of the esophagus. Symptoms are swallowing difficulty, food impaction, and heartburn. Basically the wall of the esophagus becomes filled with large numbers of eosinophils, a type of white blood cell. They believe he has a milk protein intolerance. Yes this is something we've discussed before that they had ruled it out. How come we are going back to it? Apparently this is not something you can just see with the scope, which is why we had the biopsy's of the espophagus taken. We have increased his medications again and we have changed his formula to a higher conentrated formula (still from Nutrimigen) that is packed full of more calories and the protein is broken down even more then what he was on before. This is the highest kind of broken down protein formula that you can get. We will monitor his feeds over the next few days and hopefully by the weekend, slowly try to work him up to bolus feeds again (eating every 3 hours). If Logan can tolerate this formula with a sufficient weight gain, none or less vommitting and is more content, we will then move on to try to get him to take more from the bottle. He will most likely still go home on a feeding tube until we can get him to fully take the bottle again (this could take a few months, it all depends on Logan). They have assured us that once we can get Logan off of continuous feedings and he can handle the bolus feeds then they will put a g-tube in his stomach to go home with until he can be off of tube feeds. The only way he could go home without a feeding tube is if for some miracle he takes the bottle no problem before we are discharged, but we are not holding our breath as they think this could take him a few months to grow out of the reflux & correct his feeding issues. So long story short, they are trying their best to get us home for Christmas! If this is not possible he will get a LOA (leave of abscence) for a few days over Christmas. Fingers crossed!! :)

THIS was the best news I've received in SO long!! You can just imagine the feelings of excitement & relief I was feeling. The GI team has told me that there are no guarantee's, but this is the first clue leading us in a direction as to what to do for Logan, so we will hopefully be able to see after the weekend if things start to improve and Logan begins to thrive. We will also be doing the MRI tomorrow just to confirm that nothing else is wrong and rule out any other problems that Logan could potentially have. It still seems so crazy to me to think that after everything we've been through it could just be a protein intolerance, but we don't even care. Now we know how to try to help Logan! This doesn't mean he is out of the woods yet, as he will need alot of health care & follow up visits once discharged, but it is a step in the right directions. Praise God from whom all blessings flow!!