What a Month!

Whew! What a month August was! I am sorry for not posting more frequently...or at all.

As is the nature of this blog and Beckett's health, I will warn you that you possibly do not want to be snacking while reading. :)

We were on the road for much of August, and when we were not traveling, our days and evenings were filled with swimming lessons, back to school events, and medical care for Beckett.

In just 3 weeks in August, we traveled to Dallas three times and Houston 2 times.  We saw the GI doctor, the surgeon, the CF specialist (pulmonologist), and he had a couple of different tests run.  So I actually had a lot to update on, but just no time and/or energy to do it!

GI Update
We saw the GI doctor at the first of the month.  Beckett's flushes were unfortunately very unsuccessful at this point. She changed up the plan of what we needed to flush through the cecostomy. Then, if that didn't work within 12 hours, we were to give him an enema.  In addition, she put him on Flagyl for the first week of every month to treat Small Intestinal Bacterial Overgrowth, as well as Erythromycin to help speed up the motility of his GI tract.

The Flagyl and Erythromycin did seem to help with his severe distention so that was good. However, the flushes were still going wrong...like literally the wrong direction. So as soon as we put the flush in, it all refluxed back up and out of the button site.  So clearly, this wasn't going to work as not only was the flush not coming out, but it wasn't even going through him or in him. Then, the button started leaking stool...a lot of it. So we went back to Dallas for a radiological study to see if the cecostomy tube was in the right position.  This would help confirm if it was a mechanical issue with the tube or the flush just not working.  The tube was confirmed to be in the correct spot, and of course, the flush didn't come back out at the hospital (for them to witness).  It waited until about 15 minutes after leaving the hospital. Frustrating. It has been tough, and sweet boy shed many tears over the situation. Not easy. Long month.

The flush recipe has since been changed and....drumroll, please-- Nearly 2 months post-op, and it is working. For the last week, the flush has been doing its job. Hallelujah! We are so relieved and thankful for that! He is on quite a hefty amount of meds for it to work, but it is working! Unfortunately, he is still leaking a lot of stool, which is definitely a problem.  We hope to get that resolved quickly.

Surgery Update
The surgeon is very pleased with the healing of the incision and the tube site. He has a small bit of something called granulation tissue around the button, but it is not horrible at this point.  He unfortunately seems to have a bit of a rash around the button, but it is controlled and not causing Beckett any discomfort.  The surgeon does not need to see Beckett again unless there is a problem.

CF Clinic Update
We really like the CF clinic in Houston at Tx Children's.  Of all the specialists that we saw there, I would have to say that he is my favorite.  Hence, the reason we drive all the way to Houston to see him. Unfortunately this time around, the appointment was the morning after the GI appointment in Dallas.  So that made for a busy couple of days and three tanks of gas!! There is nothing to eventful to report from this appointment.  He wasn't overly impressed with Beckett's growth, but he also wasn't overly concerned about it. We did learn that Beckett's pancreas elastase test came back showing moderate to severe pancreatic insufficiency.  This does go along with Cystic Fibrosis. It means that his body is not absorbing food appropriately (which could make weight gain quite difficult).  We discussed his enzymes-- the med that helps his body break down, digest, and absorb food-- and were instructed further on these.  We also decided to return for a repeat sweat test. The sweat test came back normal. No big surprise there...it has been normal in the past, and he has never followed those text books!

Genetics Update
This can be slightly controversial, but we sent Beckett's blood work on to whole genome sequencing. They believe through this process, perhaps they can discover the cause of Beckett's trouble.  In turn, it might be able to help other people some day who are struggling similarly. It also might help us know how to treat his health problems and how to best help him.

And Coming Up--
Tomorrow Beckett has a GI appointment, so back to Dallas we go.  Prayers for safe and easy travels for me and Beckett would be very appreciated.  Please pray that we get some ideas on how to improve this leakage problem.  Also, I am going to talk to her about the possibility of a CF specialist in Dallas seeing Beckett.  After our constant travels in 2 directions last month and some discussions with doctors, we feel that - as much as I like the CF doctor- we need to get all his specialists in one place. And we have decided on Dallas. It will not only help with the traveling, but it will also help in the consistency in Beckett's care.  This necessary consistency is actually the bigger reason.  The communication within one hospital is much easier and more streamline and everyone is able to work together for a greater good it seems.  However, we are not sure if we will be able to find a CF specialist to see Beckett in Dallas as he is so very non-classic.  Praying for just the right doctor. And if there isn't one in Dallas, then we will continue to juggle the two.

We also will see Endocrine again soon.  The GI thinks that we need Endocrine to check on a couple of things for us including diabetes and hypoglycemia. And the geneticist thinks it could be helpful to discuss growth hormones. She says there is no way to know if they will work for Beckett or not, since we do not know his diagnosis, but that it may be worth looking into.

OK, I think I have covered all of the major updates in this whirlwind of a post.  Pretty quick and to the point! I will post more soon. It shouldn't take me so long to update again. 

I also have some pretty sweet picture of my big boy going to Kindergarten! I will be back to share those soon.

Thank you so much for your prayers over this last crazy month.  We really appreciate them and need them. So thank you. And thank you for your texts and messages checking in on us! We will keep you updated and let you know how he is doing!

Love-
Kaylan