Last Friday Bennett woke up with a stomach bug, which was not much fun at all.....but thankfully it was done by the afternoon and he has been good to go ever since.

We did a fun fall day trip to Charlottesville this past weekend and enjoyed a perfect, crisp fall day.  Bennett thoroughly enjoyed the tour of Thomas Jefferson's house~ he giggled and jabbered the whole way through the tour......the boy obviously loves history just like his daddy :).

We have a follow up appointment with our GI doc this week to see how his G tube is healing up and will have an eye appointment next Monday to see if he needs another Botox injection into his eyes soon, so things continue to move forward.  It has been so wonderful to be home and back into our routine.....we are praying for no more hospital stays for a while.

Love,

Kelly, Travis & Bennett

Bennett is back home and doing great~ thank you for ALL the prayers and love given to us.  He is tolerating his feeds great and his g tube site looks great, so we are praising God for no complications thus far.  We will be cleaning his g tube site daily and will have a follow up appointment in 2 weeks to make sure it is healing like it needs to.  Eventually he will have a "button" placed where his current PEG tube is coming out of his tummy.  Either way, it is SO MUCH EASIER to feed the boy this way vs. the NG (nose feeding) tube because that seemed to really irritate him and cause massive refluxing.

He is sooooo happy to be sleeping in his crib again and just keeps looking around smiling, so he definitely appears to be appreciating the familiar surroundings.  Our time in the hospital was only 2 days/nights, but it felt like MUCH longer.

We will post some pics later on, but until then we are going to enjoy having our sweet boy home and get out and feel some of the beautiful fall weather.

Love,
Kelly, Travis and Bennett 

Bennett will have his g-tube surgery tomorrow (Thursday) morning at 11am, so your prayers for the procedure and the doctors who care for him are greatly appreciated.  We're relieved in a way that it is just the g-tube and not also the nissen (the wrapping of the stomach around the lower part of the esophagus to prevent reflux) as we thought we may have to have.  If the nissen is ever needed, then we can always have this done.  For now, though, it's just the g-tube. 

We're told the procedure will last around 30 minutes to an hour, and Bennett will stay in the hospital for 24 hours afterward.  He should be able to come home by Friday afternoon, g-tube and all.  The team of doctors that is placing the tube is very experienced with the procedure and they have assured us that things should go very smoothly. 

Thanks again for all your prayers.  Overall we feel like this is a good "middle of the road" way to go to help Bennett's feeding.  It's not as simple as the NG tube through his nose, but it's also not as invasive or complicated as the tube with nissen.  Bennett has some good friends with their own g-tubes, so he's looking forward to learning all the "tricks of the trade" when he sees them. 

We'll try and post after his procedure. 

Travis, Kelly, and Bennett

*UPDATE - October 9th, 5pm*

Bennett's procedure went very smooth this morning and he is currently sleeping away in his room at the hospital.  They will give him morphine and tylenol to help with any pain he has over the next day or two, and an IV with antiobiotics will be running as well.  We hope they'll let him come home tomorrow (Friday) afternoon, but they may keep him until Saturday.  Anyway, just wanted to let you know that all is well and that the boy is sleeping soundly (hopefully for the rest of the night!).

We are home, so thank you for all the kind words of encouragement and prayers!  We are incredibly appreciative for all the support that continue to have on this journey.

Bennett is on the NG (nose feeding) tube and will be for the next week or so~ we have a follow-up appt. with our GI doc next Friday and will then talk plans for the g-tube (placed directly into his stomach).  When the g-tube happens we will be back in the hospital for 2-3 days.  He still wants nothing to do with the bottle, so we are going to continue with speech therapy in hopes of eventually drinking all he needs by mouth.  Until then, we can rest assured knowing that he will get the hydration, nutrients and meds that he needs via tube.  His feeding had been creating a lot of stress around here, so he deserves to return to his "normal" life and not be strapped to his high chair for the majority of his day!

We updated some hospital pics of the tiny tiger for your viewing pleasure :).  He was pretty much all smiles all week long and didn't seem to notice that he never left his hospital room.......his mommy and daddy were definitely getting cabin fever in the hospital and are thrilled to all be back together again.  In fact, the boy hasn't stopped smiling and babbling since he walked through the door into his familiar surroundings and spent about 3 hours of glee playing in his crib.

Have a wonderful weekend and we thank you for all your love and prayers. 

It's been quite an eventful week so far, but we think (and we hope) that we may be able to head home on Friday afternoon/evening.  This plan could change, but right now we're hopeful this will work out. 

Bennett's swallow study on Monday did not go well as he was fairly tired and very hungry, and therefore didn't really enjoy being surrounded by several large x-ray machines and sitting in a cold seat.  It's almost as if he was looking at us and asking, "do you honestly think I'm going to sit here with a smile on my face and calmly drink and eat for your little x-ray study??!!  I'm miserable here!!"  After a few minutes it became quite obvious that he was not going to make it through the test, so they cancelled the study and we went back to his room.  At this point the plan is to schedule another swallow study early next week on an outpatient basis. 

Tomorrow morning Bennett will undergo another test that will last approximately 24 hours.  This test is essentially very similar to his seizure monitor test several months ago, when he was videotaped for an entire day.  For the test tomorrow another tube similar to an ng tube will be placed down his right nostril alongside his ng tube.  This tube will video his esophagus for 24 hours to determine how he is reacting to his feedings.  On Friday morning the test will end and our hope is that we will be able to take Bennett home while remaining on the ng tube for now. 

Once the test results/analysis of the video monitor are complete, and once the swallow study is completed, a decision will be made on whether or not to surgically place a g-tube into his stomach.  This surgery, if it even happens, could come as early as the end of next week, but at least we could have a few days at home before.  We think the doctors are sensing how much we want to bring Bennett home, so thankfully they're very willing to structure a plan that allows us to do this while also ensuring the tests he needs are scheduled and completed.

Overall Bennett seems to be doing very well and significantly better than last Thursday and Friday.  His cold seems to be nearly over, and they even removed the IV line from his ankle this afternoon.  The plan at this point is to have him on either an ng tube or a g-tube to ensure he's receiving his nutrition as well as his meds, and then to continue speech therapy to work on his swallowing difficulties.  How long he remains on either the ng tube or the g-tube remains to be seen.  The doctors are hopeful that the tests will reveal what is causing Bennett's difficulties in swallowing.

As always, thank you for your comments and your prayers.  We will post updates as they become available.  Tomorrow we'll try and post some pics of Bennett in his new room. 

Travis, Kelly, and Bennett

Once again, thank you for your comments and most of all for your prayers.  They continue to be such a source of encouragement for us all. 

Step one is going very well, so we are very thankful for that.  On Saturday they took Bennett off of the antibiotics as they felt the pneumonia threat was much lower than it was on Thursday and Friday.  On Friday night it took over an hour and over 6 different people to find a vein for the IV because he was so dehydrated.  Since it took so much time and effort they have decided to leave the IV in even though he is receiving very little fluid from it.  They want to leave it in just in case they need to re-start the antiobiotics at a later date.

The main concern at this point is his feeding and weight gain.  As mentioned, he is having great difficulty swallowing anything at this point, either liquid or solid.  The NG tube has worked well so far and he is being fed well through that right now.  On either Monday or Tuesday he will undergo a swallow study which involves monitoring him swallow his liquid and solid food and also taking chest x-rays.  If there is a high amount of reflux and any aspiration at all, then it will be more likely that he will need a G-Tube surgically placed into his stomach.  If there is no aspiration and a low amount of reflux, then other options will be discussed.

Overall, Bennett seems to be doing well and is getting used to his new room at the hospital.  He has his own tv in his room, so he and his daddy enjoyed being able to watch some football together this weekend and of course reading "Moo, Baa, La La La" about 120 times!

We'll try and post as more updates become available.

Travis, Kelly, and Bennett

Bennett was admitted into Fairfax INOVA Hospital earlier tonight, so we again ask for your prayers for his health.  There are two main concerns presently:  potential pneumonia and feeding/hydration problems. 

Bennett developed a normal cold earlier this week, but because of his chronic lung disease diagnosis a common cold can quickly become pneumonia for him.  We spent Thursday night in the ER as his temperature spiked and he was refusing to drink or eat.  They gave him an IV, took chest x-rays which looked good, and finally sent us home.  On Friday he continued to refuse to drink or eat, and because of the congestion in his lungs and fear of this becoming pneumonia our pediatrician wanted to admit him.  We were told this admission could last 1-2 weeks. 

Step one is clearing his lungs.  He is on an IV which now makes it extremely easy to give him his meds, and he is also back on the infamous "ng tube" which goes in his nose and down to his tummy.  This makes it much easier to feed him liquids which he is having great difficulty swallowing right now.  They will also be putting Bennett back on anibiotics as they do not want any small infection amounts in his lungs to grow into larger issues.  We were told step one will probably last 2-4 days.  

Step two will be surgically placing a g-tube into his stomach, but his lungs must be completely healed before any surgery will be attempted.  The decision to actually place the g-tube has not officially been made yet, but we think this could happen by the end of next week.  Bennett will undergo several tests before this even happens, such as swallow studies.  Bennett's feedings were going very well until about the first of September.  Ever since then it has been very difficult to get him to eat or drink, which in turn makes it extremely difficult to give him his meds for his reflux and seizures.  All of a sudden swallowing has become very difficult for him and he usually coughs his liquids and gerber food back up during his feedings.   

At this point one of the doctors thinks his feeding issues, though exacerbated by the cold and chest congestion, may be more neurologically based.  However, there is no consensus on this just yet, so we'll update you on this as we know more. 

As always, thank you for your prayers.

Travis, Kelly, and Bennett

Bennett had his first trip to Knoxville this past weekend and traveled like a rock star.  We were hoping that a change of scenery (that included the beautiful Smoky Mountains) would help him to fall back in love with his bottle.......unfortunately that did not happen, but it still was a great trip!  His Grana and Popper got to babysit him all day Saturday and his mommy and daddy went to watch UT get chomped by FL.  Bennett did not cry one tear during the 7 hour ride home on Sunday, so the boy is proving to be quite the fine traveler.  He is even working on 2-3 more teeth coming in! 

His drinking continues to be a challenge, so we are hanging in there.  He will sip water from a sippy cup to stay hydrated (about half goes down his throat and half goes down his bib), so we are thankful for this!  The GI doc wants to give the reflux meds time to work (3-4 weeks) and wants to rule out any possible allergies before we talk feeding tubes.  We will see the allergist tomorrow to see if he has any additional allergies to his obvious dairy allergy. 

UPDATE:  Bennett's initial allergy test showed allergies to dairy, wheat and beef.  We will find out more details on Thursday, 9/25. 

Bennett is a happy, chatty and funny little boy~  a true joy to his family, that's for sure.