A Blessing and A Curse....

       In many ways, Sam's G tube has been so beneficial to her. During transplant, this is the only way she received much needed nutrition as I pumped breastmilk for her. If she wouldn't have had this, she would have only been able to receive TPN (nutrition intraveneously through her PICC line). She did receive some (about a week) of TPN prior to transplant as she had stopped eating for months, but long-term use of TPN can cause damage to your kidneys and screw up your digestive system. This is also how she takes all of her daily medications. Sam has always had a strong gag reflex that leads to vomiting and there is just no way she could successfully take the slew of meds she needs 3-4 x per day without this.

        On the other hand, from the day we received the g-tube, there have been issues. It initially became very infected and was a source of TREMENDOUS pain and concern for the doctors as at the time she did not have any immune system to fight it. Then during transplant, the balloon that holds the tube in her stomach "burst" and the response time and medical response/communication within the hospital caused another surgical procedure at a fragile time in her post BMT recovery (not to mention frustration with the response we received from one surgeon in particular.)

       So this past Monday Sam's new GI doctor who has been following her colitis treatment was scheduled to come to clinic and "change out" her G tube. These need to be changed every 3 months and Sam was past due. We were told this should be a relative quick and easy change since Sam's tube is older than four months, the site should be well established and healed now that she has white blood cells. We would need to hold her down still, but there should be little to no pain and it should be done in 5 mins. Well, that was the plan anyways. After 20 plus mins of holding Sam down, she was vomiting, sweating, and screaming in pain. The GI doc could not replace the G tube and something was obstructing the pathway to her stomach. She was very calm, considerate, and attentive to how this process was going and placed a catheter in Sam's stomach to hold the site "somewhat" open. This was an experienced attending physician and her RPN who apologetically said this had never happened to her in her 10 plus years of experience and that we would need to have the interventional radiologist place Sam's tube again under anesthesia. This is NOT what we wanted to hear as this is the dept. we have NEVER had good experiences with and we really wanted to avoid putting her under for the 11th time since February.

          Sam received her IVIG transfusion in the transplant clinic which takes three plus hours. We then went to the IR dept. and Sam was "taken back" at about 3:30 pm. All while she, myself, and my mom had not eaten since the night before. It was the same surgeon I had formally complained about, but he was a professional throughout the situation and was bending over backwards this time to acknowledge ALL that Sam has been through. Unfortunately, it was also an anesthesiologist we have had before and NOT the one we have had positive experiences with. He is gruff, dismissing, and condescending. He of course is a "separate entity" from the surgical staff. When procedures are "planned ahead of time" I have worked hard to request specific staff that we have had positive experiences with in the past and we can plan to be on their schedule. When it is an urgent situation like this, you have to "go with whoever is on for that day." After calmly but sternly sharing my concerns with just having him rip her from my arms and take her back screaming and hold her down until she is asleep b/c she "won't remember it", I insisted on carrying her myself into the operating room if he would not give her something to "relax her before." Again, I am NOT for drugging my kid more than needed but this is the same drug that they are going to give her in the O.R. anyways before giving her the mask as well, so in my mind it is just a matter of timing. I carried Sam into the room with one of those "full body" zip up white suits and hats on. She was still scared but much more calm than she would have been. I held her as he gave her the propofol into her picc line and laid her down on the table when she was asleep.

         The procedure lasted longer than expected because the surgeon said Sam is developing "clumps" of skin for some reason and her site is closing much more quickly than typical. He had to "rod" a medal line through her site to remove the skin clump and enlarge it enough to place the new tube. "Nothing that could have been accomplished without anesthesia on another floor." He said he recommended her next few changes be planned to be under anesthesia until they are confident that this can be done smoothly and easily without it. This is again the doc who last time thought Sam was "just being dramatic" basically. While we certainly want to make the process safe and minimally traumatic for Sam, we are not thrilled with having to plan to "put her under" again in a few months and the additional drugs that this entails. The anxiety of waiting for that surgeon to walk through the door and tell you "everything is ok and we are waking her up now" truly does not get easier, no matter how many times we've done it. In some ways, it gets harder because you know you are taking a small risk every time she goes under and you keep taking that risk OVER and OVER....

       Sam now has a new type of tube called a MIC-KEY tube. It is smaller and the "tube part" is not always attached to her. We have to open a valve and lock/twist the new tube into place to administer her meds. It is also made of a different material. So far to be honest, we are not sure this is the better option for her as she is very sore from the procedure and the manipulation of locking and twisting the attachment is very bothersome to her. I also think her meds, most importantly the cyclosporine (anti-rejection/GVHD) drug is sticking the plastic more and thus we may have to go up on the amount we are giving her to achieve the same therapeutic effect. We'll see.... For now, we are home and we are watching carefully to make sure the site does not start to look infected again. All in all Sam continues to march on as her smiley and strong self. She bounces back from these long and stressful days much more quickly than Mommy does:)

       Thanks to all for the continued comments on the blog, e-mails, texts, and calls checking in. We really do appreciate all the words of encouragement and read/listen to them all! Sam's b-day is coming up and we look forward to celebrating this courageous and hilarious little girl turning 2!