August is a roller coaster. For our family, there are so many ups and downs associated with this month; and none of them have to do with school starting. We have had some happy moments in August, but we’ve also had some sad ones. For example, today, August 6th, we have officially been in our new home for one year!! I can’t help but laugh when I think back to our family living in a two bedroom apartment for two and half years. I brought my last two babies home to that cozy 900 square feet. It’s quite comical that we survived that season.

Unfortunately, I’ll always remember August 1st 2013, when we received Gideon’s PBD diagnosis. Talk about a steep drop for our family. That whole year is a blur. But on the upside, August 2013 is also when I began my blog; which started me down the road to my own emotional healing through transparency in writing.

While we have so many things to be thankful for, this August is a roller coaster, yet again; taking us somewhere we did not want to go. For six and half years, I have worked tirelessly to provide my son different ways to be nourished without the use of medical procedures. He has been to feeding therapy, we’ve used different pureed foods and even unique techniques to get those pureed foods down him when he wouldn’t take a spoon. But unfortunately, we finally hit the wall.

Gideon is losing weight again. His blood work shows malnutrition… It’s time for me to accept the fact that our boy needs a g-tube. {Insert heavy sigh}

Now I know what some of you are thinking. G-tubes are great! Such an easy feeding process! They can get all the healthy foods they would never otherwise eat! No more fights with meds!

And yes, those are all things I look forward to for our son. Unfortunately, what it is usually a quick and easy procedure, will not be so simple for Gideon. After a consultation with a surgeon today, we were reminded of why we have put this procedure off for so long. There are lots of “extra” concerns for Gideon to have a g-tube placed.

First of all, Gideon is borderline adrenal insufficient, which means he’ll need more than a few stress doses of steroids. Ugh! (If you have followed our blog for sometime, you’ll remember when Gideon was on a continuous, low dose steroid and how he didn’t sleep for almost a year…among other side effects.)

Second, Gideon has thrombocytopenia (low platelet count), which means that his blood does not clot well. So he will need a plasma transfusion before (and maybe after) the procedure. Again, these are not deal breakers, just added stress to what normally is a quick and easy procedure. But those are not even my biggest concerns.

My biggest concern is how do I keep Gideon from pulling the tube out for the first 6 weeks while it heals?? This kid will not even leave his hearing aids in for more than 30 minutes at a time, and he has had them since he was a baby! He won’t wear jackets over his shirts. Doctors have never obtained his blood pressure because he won’t wear the cuff. Oh and he kicks off ALL blankets. I’m telling you, unless this g-tube vibrates and feels good (which I know they don’t), Gideon will not rest until he rips it out. And as long as it is “healed” we can learn how to put it back in, no problem. BUT if he pulls it partially out before it’s healed, we could be pumping food into his abdomen cavity instead of his stomach. Then we have to have more tests, more procedures, more anesthesia… it’s a cascade of more interventions that we have, for SO long, been able to avoid.

So listen, I know this is not the end of the world, but it is still devastating for me as a mama. It’s gonna require extra precautions when I want to take our boy swimming. We are going to need more medical supplies and pads for when this thing leaks (yuck!). It could cause him to have reflux, something he’s never struggled with before. Basically this is just one more ugly reminder that I’m not going to be able to save him from all that PBD has taken and will continue to take from him. And so I need to grieve this loss for him and for myself.

I’ve been told, by many that have gone before me, that I will be so glad we did it. But I’m not there yet. Today I’m sad. Today I will grieve… and possibly tomorrow and the next day. But soon enough, the Holy Spirit will pull me out of the pit and bring me back. He always does. I’m faithfully sustained by the God who carries me through all the ups and downs of this life.

“He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.” -Psalm 40:2