Update Long Over Due

Wow over a month has gone by where I haven't done a blog post. We have had a quite a busy August. I swear I am never going to get caught up with all the pictures I would like to share. Curtis left at the beginning of August with the Cougs for a 16 day basketball tour in Australia. They traveled to various cities playing against a number of professional basketball teams. He had a wonderful experience down under. The boys and I would have loved to join him but after our short family trip to Spokane we knew that was totally out of the question.

The boys and I headed to Tacoma while he was gone. Trey had all of his speciality doctor appointments. All these appointments kept us quite busy but we did have some fun while we were up there (blog posts to follow).

I will try and make this post as short as I can... Trey was scheduled to have a repeat MRI at Children's to make sure his Chiari 1 Malformation has continued to stay stabilized. Which it has, thank goodness. He was sedated for the procedure. This of course is never fun. We met with our amazing neurosurgeon afterwards. We were glad to know that Trey doesn't have to have another MRI for 2 years unless symptoms of the Chiari start surfacing.

Trey also had an appointment with his neurologist. An uneventful visit. Trey will continue on his seizure medication and follow up in 6 months. We are happy to report no seizure activity.

Before our scheduled clinic appointment with Trey's GI specialist he was scheduled to have a procedure with him. Around Trey's G-tube there has been this excessive growth of granulation tissue. This is a normal response for the body in an attempt to heal a wound and in this case Trey's body response to protect where a foreign object (g-tube) now is. Some kids experience more granulation tissue than others. I can usually treat the excess tissue growth myself but unfortunately the tissue has become so fibrous it is almost become a keloid type scar. Keloid is an overgrowth of granulation tissue at the site of a healed skin injury. They can be firm, rubbery lesions or shiny fibrous nodules.

So the plan was to inject that fibrous tissues with a medication called Kenalog to hopefully reduce the scar tissue. Trey was sedated for the procedure because the injections are pretty painful.

Such a brave little boy. Getting his vitals before the procedure.

When the doctor went in he found that the scar tissue goes all the way through the tract where the tube is. He said the injections weren't very successful because the tissue wouldn't absorb the medication very well.

He also performed an endoscopy (test that examines the inside of gastrointestinal tract). While doing this he noticed that Trey had some tissue changes (inflammation) in his esophagus area. Trey is already being treated with the strongest form of medication to treat the acidity of his reflux. But in the last couple of months his reflux symptoms has progressively gotten worse. Trey constantly is turning his head to the side or grabbing his throat during the day or even when he is not getting fed through his tube. This is how we can usually tell when he is having a reflux episode. It has also gotten to the point where Trey will barely eat or drink anything these days.

So Dr. Pickens decided to have Trey undergo a 24hr pH probe study. This test uses a probe/tube that is placed in the esophagus (this connects the mouth to the stomach). The study measures the amount and seriousness of acid juices that may be backing up into his esophagus.

Unfortunately the NG had to go down Trey's nose and stay there for a 24hr period. The probe is connected to a small monitor that records the acid levels and how far Trey's reflux comes up. Dr. Pickens said this is the best way to give him detailed information that he can't get from physically examining Trey.

Trey had a similar size tube that stayed in his nose for about 4 months when he was 1. He did an amazing job with it during that time. But I was super anxious this time around. He is such a little person now. So aware of his surroundings and curious about everything. But as always our brave little boy did pretty well with the tube once he got used to it. We had a rough start at the beginning due to vomiting episodes related to the sedation medication they used to help place the tube. But he didn't try to pull the tube out once he was oriented.

Grammy helping with some great distractions

Trey's tube was connected to this monitor.

One of us had to press button if...

1. He went from lying to standing position.
2. Being tube fed or attempting to eat.
3. Giving reflux medication.
4. If we saw the head tucking or grabbing his throat during his reflux episodes.

So this meant Trey had a shadow for 24hrs. I was aware his reflux was progressively getting worse. But when your sole purpose for the day is to only watch for those symptoms it was amazing what we saw. I had no idea he was doing the head tucking ALL the time. Of course I felt terrible.

Dr. Pickens called us the next day with the alarming results. Trey's acidity levels when he refluxed were within normal limits-which we expected. But the amount of times he refluxed and how far the gastric juice would come up was severe. We pressed the button for head tucking (Trey's physical sign he displays when refluxing) 200 times in a 24hr period. Out of those 200 times 150 of those times correlated 100% with reflux. So that day Trey experienced reflux 150 times and during those episodes the gastric juices came all the way up.

So Dr. Pickens referred us to an amazing pediatric surgeon at Mary Bridge. She reviewed Trey's history in detail and went over Trey's pH probe study in depth. Curtis and I were able to sit down and meet with her. She said without a doubt Trey needs surgery. So after her very thorough explanations and question and answer time with us (which we greatly appreciated) we agreed that this is the best thing for Trey's quality of life.

So towards the end of this month Trey will undergo a Nissen Fundoplication. This is a surgical procedure that will hopefully correct his reflux by creating a better valve mechanism at the bottom of his esophagus. The goal is to prevent stomach contents from returning to the esophagus. During the surgery the upper portion of the stomach is wrapped around the lower portion of the esophagus.

This tightens the outlet of the esophagus as it empties into the stomach. After surgery, food and fluids can pass into the stomach but are prevented from returning to the esophagus and causing reflux symptoms. This will also allow the esophagus to heal.

Trey will have the surgery done laproscopically which will hopefully create less pain after because there won't be a large incision that has to heal. The surgeon said that the surgery will take about 2-3 hours. Since Trey's current g-tube is having so many problems the surgeon thinks she will also have to revise a whole new site. So this may cause the surgery to go a little longer. But she won't know until she is in the operating room. Trey will probably have to stay in the hospital around 5 days.

Obviously our first question was will the surgery help Trey with his eating struggles. She said there is not 100% guarantee that the surgery will fix Trey's eating issues. But she does believe the reflux is the majority of the problem. She talked about how Trey is developmentally appropriate in all other areas except feeding. So kids with similar struggles usually start picking up their enjoyment of eating once they head to school. When Trey's g-tube was initially placed they told us the average age children get their tubes removed is around the age of 5.

We do know after the pH study that we have to do something to improve Trey's quality of life. We know his eating can't get any worse at this point. But of course we totally dread thinking about our little Trey-Trey having to go through one more procedure.

I will do my best to post how things are going during our stay in the hospital. We are again trusting that God has everything perfectly planned out for our little man.

Pictures from our Tacoma visit still to come....