This is a blog post I wrote early this morning…..read on to find out why.

Love this guy beyond and I don’t usually post about his day to day Crohn’s struggles, hospital stays, other interventions and treatments but my sporadic, personal blog posts paint a picture of what we are coping with. Life goes on for everyone but our days are often still filled with struggle and the usual trappings of living with chronic illness. This week has been no different. Last weekend we had returned to Pittsburgh for a very helpful and intensive weekend for Lowell to continue to build up pain management techniques. We had scheduled surgery for Monday, the day after we got back, for a Gastronomy Tube (G-tube) to be placed which is basically a button that opens to the stomach and is used to deliver nutrition in the form of calorie and nutrient dense formulas. It can be hard to grow and gain weight for many reasons when you have IBD including low appetite, pain after eating, difficulty absorbing nutrients and more. Lowell is not growing the way he should be for a 17-year old though he loves food and has made a tremendous effort to eat more and gain weight. He has been doing nasogastric tube feeds (which is a tube that he inserted nightly through the nose to pump formula through) on and off for years but those are hard to maintain on a long term basis so we finally decided to go ahead and have the surgical G tube placed. The surgery went well, was done laparoscopically and was much easier then his other abdominal surgeries. The day after the surgery Lowell even expressed that he liked it as it seemed pretty easy to use and most importantly he could add a lot of extra calories to his diet. But as things often go with Lowell, and even though the first few feeds in the hospital were fine, when we were discharged yesterday the first time we hooked up the pump at home and started the feed, Lowell was uncomfortable immediately and in pain. We had to stop, call the surgeon and drive to the ER for an X-ray to determine the issue. Both the surgeon and our regular GI said complications were rare. After about 4 hours of waiting, trying to do the test with some radiologists who didn’t quite know what they were doing, well you can guess what happened next. When we finally were able to do the contrast X-ray, the thing that is “so rare” happened to Lowell meaning the tube malfunctioned and needed to be surgically repaired. It was midnight by now. The surgery started at 2AM and we were back with him in recovery around 4AM. There were terrible insensitive nurses in the OR recovery, a lame post op pain management plan and many other hospital frustrations. I have already spoken to the charge nurse, nurse manager, and patient relations about the issues.

Thank you for all your calls, texts, messages, kind word and offers to help. It’s hard to respond to everyone but I so appreciate it. You all who have been with us over the years know about the complications we have endured and we know that we have genuine love and support and that you are there if we need anything. I say we, because yes, we have endured it but really it is Lowell who I know has been through it all and had the most difficult things to deal with. it is hard to really know if your child has not been through these things.

I don’t need anything, can’t make plans beyond today and most important is to sleep and rest. That’s where I am at.

Jonah visits after work at Iverbe and we will go home in a few days. Lowell will continue to catch up on his school work, play piano, watch episodes of The Office and hang out with the dog.

It takes a whole bunch of energy for all of us to be in this, -physically, emotionally, psychologically-and more so I sometimes can’t do much else. Even if it seems like getting out for a night with friends or going to a concert or cultural event-normally deemed as fun or a mini escape-it’s not always the case and in fact those things can also be energy draining instead of being a respite. So if I say no, or cancel plans, or can’t answer the phone, and can’t call or text or email back, this is why.

I’m currently otherwise focused on the important and very consuming task of taking care of Lowell, of Sam of Jonah, of me, of us.