First Infusion

I was so proud of my boy today. He did fabulous. He handles so much with such grace and maturity. We met a nurse from the infusion company in Dr. P's office. He went over some paperwork with me and we began preparing the pump, tubing and needles. Luckily it was all pretty familiar to me after years of doing IV meds and SQ shots. Alex gets infused through 2 needles a few inches apart. The first one went in and he barely felt it. The second was quite a bit more painful. When we started the infusion the second site continued to be painful. We stopped the infusion and with Dr. P's approval only infused through the first site. The infusion took about an hour and fifteen minutes. Alex was fine. He had some swelling and redness at the site that was to be expected. Otherwise we have had absolutely no problems. We are spending the night in Houston just to be safe and plan on heading home tomorrow morning.
Thank you to everyone who prayed for us this week. We love you guys.
Ali

Not what I expected!

You would think after 7 years of this, I would know better then to go into a Dr's appt with preconceived notions of what the appointment will be like! I went into our GI appt today expecting it to be very quick and simple. I thought they would be happy he is gaining weight, happy with his labs and want to just keep everything status quo. And that is how the appointment started out. But as Dr. N and I started talking more about the impossible situation we are in, he started thinking outside the box and we came up with a new plan.

We have been stuck for a long time. Alex's GI dysmotility really limits how much we can get in interms of calories and fluids. On top of that we have to drain Alex's stomach into a bag 24 hours a day. He loses about a liter a day in fluids. There is no way for his little body to compensate for this amount of fluid loss day after day. So we are stuck using his port every night to give either TPN or IV fluids. We tried to stop using his port to replace these fluids this summer which caused the weight loss and severe fatigue we saw. There has been some discussion about a medication to slow secretions however, these generally aren't used in neurologically in tact kids because they dry you out and can be pretty uncomfortable.

 So fast forward to today....We know one of the reasons Alex loses so much fluid is because his pylorus (opening between the stomach and small intestine) is completely shut. Alex had a surgery several years ago to open Alex's pylorus but it was unsuccesful. Dr. N wants to try dilating Alex's pylorus once again and inserting a tube to hold it open. His hope is that we can get some of the stomach juices to empty into the intestines instead of a bag. If this worked it would be great. However, there are some potential issues that could keep this from working. At least it is something to try!

After our appt, we were able to meet some friends for lunch and a quick trip to the park. Now a quiet night before we head in for our infusion in the morning!
Please pray Alex does well and has no reactions to the infusion.
Ali

In Houston

I meant to get out an update before we hit the road again, but time got away from me. Alex and I are in Houston for a GI appt and to get his first SubQ IG infusion (to help his immune system). Barring any problems we should be home on Thursday! This is kind of a "fun trip". Missy's daughter has been sick, so I decided to try my hand at Priceline and get a hotel room. Well, we wound up in a 4 star boutique hotel in downtown Houston. In Alex's words, "And I used to think Hampton Inns were nice"! I think I have created a monster with expensive taste!

I will update after the appointments.
Ali