Here We Go Again

As we are quickly approaching our next round of trips to Cincinnati, I thought this would be a good time to update you on what lies ahead for our sweet Rhett.  We have waited and anticipated these next trips since February.  I almost can’t believe how quickly time has passed, and that it is already time to go back.  We will have two trips to Cincinnati that are a week a part.  We head out on our first trip on Monday afternoon, and we will come home on Friday the 16th.  We will be at home until the 22nd, when we will leave out for the second trip.  Next week is full of appointments and preoperative procedures.  If all goes well next week, the second trip is when Rhett will be having a major airway surgery.

I would like to focus on next week for this post so that you all can have some specific prayers for Rhett and our family.  We have an extremely full schedule next week as we prepare for this next surgery.  On Monday we will leave and drive half way to Cincinnati.  We will finish our trip Tuesday morning, and his first appointment is on Tuesday afternoon.  Please pray for safe travels for our family, and that Rhett does not get too restless in the car for such a long trip.  We will have the iPad and Mickey Mouse Clubhouse readily available, but even that will not keep him entertained the whole time.  That many hours in a car is tough on anyone, especially an 18 month old who loves to move.

Rhett’s first appointment is a clinic appointment on Tuesday afternoon with his GI doctor.  This was an appointment that I recently added to our schedule a couple of weeks ago, even though he was released from GI back in February.  Rhett has always had reflux problems and issues with throwing up whatever he is being fed.  When he was still an infant, we thought this would be something he would outgrow since all infants spit up.  When he turned a year old, I transitioned him to a blenderized diet.  This is where I use real food to blend up to feed him through his g-tube so that he is not living off of formula only.  Once we switched to this diet, the vomiting did get better.  He went from throwing up after every single feeding, to throwing up once or twice a day.  We continued with this diet thinking that it would continue to get better, but he was pretty consistent with throwing up daily.  I knew this was not normal and that if he continued to throw up this much, it would affect the healing process for his surgery.  I wanted him checked by the GI doctor again to make sure everything is still functioning correctly.  We have recently changed the recipe for his diet so that we can feed him a smaller volume and still get the calories he needs each day.  So far this is going extremely well!  I am hoping that his vomiting was because we were feeding him too much and his tummy couldn’t handle it.  One of the struggles of tube feeding is that I have no way of knowing if he is full or not.  Please pray that everything GI related looks fine.  Also pray that this diet will continue to work for Rhett, and that the vomit will stop. 

On Wednesday, Rhett will have a triple scope with ENT, GI, and the Pulmonary doctor.  He will be under anesthesia, which always makes me nervous.  Please say prayers that Rhett handles being under anesthesia fine.  Even though he has never had a problem with it in the past, it is still a little stressful each time your child has to be put to sleep.  Also pray that everything looks great so that we can continue with plans of surgery for the following week.  His scope is not scheduled until 3:00 in the afternoon, which means he will have to go all day without eating.  He is on a pretty strict feeding schedule, so I do not know what it will be like for him to go that long without anything to eat.  Please say a prayer that he is not too irritable going that long with no food.

Thursday will be an extremely busy day for Rhett.  He will have 3 appointments that are back to back.  One of his appointments is with the ENT that specializes in ears.  We are planning to discuss options for his left ear.  We are unsure if he has a working nerve in that ear, and we are hoping to be able to get some sound awareness for that side of his head.  Rhett will then have a Fiberoptic Endoscopic Evaluation of Swallowing (FEES).  This is a swallow study that will give more information about Rhett’s swallow and how his anatomy works when swallowing.  Rhett has had several swallow studies, but this will be the first time he will have this kind.  I am not looking forward to this at all because they will be putting a camera through his nose so they can see around his voice box and esophagus.  Please pray that this procedure is not too terrible for him.  I can’t imagine that it would feel good trying to eat with something down your nose.  Also pray that he will cooperate during the procedure so that the doctors are able to get all the information they need.  I would like for you to pray that his swallow continues to show improvement.  The final appointment for this day will be an appointment with an eye doctor.  Rhett has not had his eyes checked since being in the NICU.  Vision problems is something that is very common with CHARGErs because many of them have colobomas in their eyes.  Rhett does not have colobomas  in either eye, but I wanted to follow up with a doctor to make sure everything continues to look fine with his eyes.  Please say a prayer that his eyes check out great, and that we do not find anything wrong.

We will be traveling back home on Friday.  We have a very busy week ahead of us, and your prayers mean the world to us.  Rhett has already come so far in such a short time, and he continues to amaze me every single day.  He is the happiest, sweetest little boy that I have ever met, in spite of all that he has been through.  While I hate he has to go through so much, I appreciate the privilege I have been given to witness God’s miracles each day through Rhett.  Weeks like this are stressful and tiring, but it is one step closer to where we need to be.  Thank you again for your prayers as we enter into next week.