Our Appointments

Here is Braden at Children's Hospital. We had lunch outside in the beautiful sunshine!

Today we were at Children's Hospital for Braden's scheduled follow-up VFSS (video fluoroscopic swallow study) appointment and his appointment at the pulmonary (lung) clinic. We first went to have his swallow study done this morning and we can report that Braden has made significant progress in the last two months. He is not better, but there is change and that is what we were hoping for (best case scenario). It is sometimes difficult to wait patiently for a developmental change when we cannot see progress on a daily basis. We have to wait until we can see it on a screen during his tests every couply of months and in the meantime we just continue with his care as directed by his doctors and hope that it is making a difference. Well today I would say that yes, the last two months have made a difference. In the last week (unfortunately) Braden ended up with a double ear infection and also needed to go in for his 12 month shots and because of that we had two doctor appts last week with the pediatrician and of course another one today. However, the good news is that at all three appts we were told that his breathing has never been better and that his lungs sound perfectly clear with no wheezing! This is a big change in itself and one that we had noticed improvement in over the last six weeks. We are so thankful and feel so blessed to know that many of you have been praying for Braden and that those prayers have made a difference!

As far as the appt's went, after his swallow study he then went to see the doctor at the pulmonary clinic this afternoon. The doctor was very pleased with Braden's progress and said that it didn't surprise him to see this change for the better. Usually at about 12 (to 18) months is when they expect to see some progress and advancement in developmental swallow problems. I am sure they have told us this before but you don't want to count on something like that because each child is so different and develops at their own rate, as well as that the stats for a condition like this are very few.

So, Braden has made progress and it is something like this (without getting into too much medical jargon):

At his last swallow study two months ago Braden had some trouble swallowing double thick liquids and he had lots of trouble swallowing single thick liquids.

Today they started with single thick liquids and he proceeded to swallow about twenty to thirty swallows with only one small incidence of micro-aspiration. He did not remember how to suck from a cup with a lid but we managed to syringe some of the liquid in and used a regular cup to pour one swallow at a time into his mouth. That one aspiration was a trace of single-thick liquid that went into his lungs. Not great of course, but a big improvement from last time. One of the unfortunate things about the aspiration is that Braden has always been labeled as a silent aspirator which means that if it were you or I were aspirating that liquid we would start coughing. He does not have that reaction and this is a danger obviously because it means that we don't know when he is aspirating (except for when he is being x-rayed).

In light of these test results the doctor would like to start Braden on double thickened milk from a cup and continue to keep the NG tube in (yay, no stomach tube for now) for supplementing with water for hydration purposes. There is a strong possibility of dehydration with a diet of double thick liquids.

Our follow up appointments will again be in two months and we are hopeful that at that time his swallowing has improved enough to put him on single thick liquids and take the NG tube out for good. However, if at that time he is not able to progress to single thick liquids, the doctor did say he will need a stomach tube because he cannot keep the NG tube in for any longer than six months.

For now we are so thankful for this progress and for the answers to our prayers, as well as for all the support we continue to receive!

The text from Braden's birth announcement:

"Give thanks to the Lord for He is good, His love endures forever."

Pslam 107:1