In this first picture you are looking at the scope of his trachea.  The pink swollen area in the center should be smooth and flat.  Imagine that your windpipe is about as large as your pinky finger.  Now, imagine that that just got reduced by about half and that is what you’re seeing.   In the second picture you can see the swelling around his vocal cords.  Those are the two small white things also near the center of the picture.

Trey’s surgery went off with flying colors this morning.  We got down to registration and  pre-op right around 6:00 am but due to the surgery staff not being able to locate his anestesia records the procedure didn’t get underway until arond 8:30.  Fortuantely they made up for lost time.  By about 8:50 the Drs. informed us they were done with both scopes and even had pictures to show us (stay tuned to this space as I will post them as soon as I have them) of what they saw.  Essentially, areas of Trey’s glottis (the tissue surrounding the vocal cords) are extremely swollen and raw.  There is one image where you can see the actual individual “bumps” of inflamed tissue.  The ENT doctor is convinced this is a result of his acid reflux condition.  They gave him a dose of steroids while he was asleep to help the swelling and then they were done.  The treatment they are going forward with is to keep him on the Prevacid in order to reduce the amount of acid in his stomach.  He’s still going to reflux but now it just wont have as much acid in it to burn his windpipe.  Additionaly, they believe that because the area is so swollen and irritated that it is also partly to blame for his aspirating.  The hope is that as the swelling goes down that the aspiration ends and he can go back to a normal diet.  As it stands, Trey continues to be banned from drinking any liquids that haven’t first been thickened with a product called Thick-It.  If you can imagine a slushy (ICEE for us older folks) thats about the consistency of what he is allowed to “drink”.  I call it drinking but typically it has to be spoon fed to him since its too thick for a tippy-cup.  Other than that he is just on a soft food diet like mashed potatoes with extra butter, pudding, applesauce, yogurt, ice cream and anything else of that sort.  Of course all of it has the Duocal added to it to increase the calories. 

As expected, they decided to keep Trey overnight just to make sure he didn’t have any adverse reactions to the procedure but everything is looking good for an early Tuesday dismissal.  Yay!!!

After 11 days and 10 nights at the hospital we were given the option of going home for 2 nights or staying at the hospital till surgery early Monday morning.  Home was calling our names and we surprised the girls around 4:30 Friday.  I kept waking up last night thinking I was in the hospital room.  My own bed never felt so great!  And Trey slept the best he has in months.  He was in such a great mood today and you should’ve seen the smiles he gave his sisters when they played with him.  Cousin Nate, Daren and Tracey stopped by to visit and Nate and Trey had fun playing together.  It is tough trying to get enough calories and protein in Trey.  His favorites right now are yogurt, mashed potatoes with a lot of butter and applesauce.  He still refuses to drink thickened drinks.  It’s scary wondering if he is staying hydrated or not.  When we left the hospital he was just shy of 20 lbs.  They measured his arms and once again we heard if we can’t get some weight on him we will have to turn to a feeding tube.  He has always come through when this has been threatened.  

It was a long week..some of the highlights included….cat scan, making him out of it for the scan, blood draws, his breathing, putting him on oxygen, having the 2 PAs rush in, yes he has pneumonia, putting him on meds via IV, his hand swelling from the meds, switching hands for the IV, to no we don’t believe it is pneumonia, take him off the meds, me getting all dizzy from lack of sleep and the nurse trying to hold me and Trey up and yelling for help, watching his hemoglobin drop again, but so far not low enough for another blood transfusion, waiting for PTLD results, finding out cat scan results and the narrowing of his air way, another Barrium swallow test, still aspirating, no more bottles for Trey, trying to get as many foods as we can get in him, fighting to get the nasty tasting Prevacid in him, finding out they didn’t do the right PTLD testing that was requested, and hearing that DR. Langnas wasn’t in our room for rounds Thursday cuz he was at the nurses desk on the phone yelling at someone, meeting with the ENT docs and on and on. 

Thank you to our families for helping with the girls and coming to visit us in the hospital! Thank you to everyone for your prayers for Trey and us!

Trey’s aunt Christa, who gave him part of her liver has her nursing graduation ceremony tomorrow.  Had she not taken the time off for Trey she would have been done 6 weeks earlier.  We are so thankful for what she has done for Trey.  After helping a lot with the girls…getting them dressed, taking to school, picking up from school, meals and things she has decided it will be a long time before she has kids.

The doctors thought it would be better if we came back Sunday night.  The way the snow is coming down it looks like it could be a long drive to Omaha.  We have to report at 6:00 am Monday and Trey is the doctors 1st surgery at 7:30.  We never thought to ask how long surgery will take.  We will try to update this site ASAP with results.  Again thank you to everyone for your prayers and offers of help.   

Maybe.

To bring it all up to date…After waiting almost 4 days for the results we found out that Trey tested negative for PTLD and is no longer testing positive for EBV.  That is a huge weight off of our shoulders.  The thought of piling cancer on top of everything else was just overwhelming. 

More good news…the Drs think they have a handle on what is actually causing his breathing problems and it all stems back to one thing.  The CT scan showed that Trey has a very narrow trachea.  That, in turn, is the leading contributor to the aspiration (along with the reflux) which is causing him to not get all the calories (especially protein) that he needs which is causing the ascites.  The prevailing theory is that when Trey had his transplant, the ventilator tube that he had down his throat caused some scarring.  That scarring has narrowed the airway and created a condition called Aquired Subglottic Stenosis.

The bad news…it means yet another surgery (his fifth).  On Monday the 22nd Trey will undergo a Direct Laryngoscopy and Bronchoscopy.  The Drs will first do the bronchoscopy to look at his entire airway structure including down into his lungs and then the laryngoscopy to look at his voice box and up behind his nose.  After that they will perform the surgery and cut away the scar tissue in his throat that they feel is not treatable wioth steroids.  Either way, they will inject his throat with steroids in order to the shrink the scar tissue.

We are currently still in Omaha and will remain so until at least Friday.  There is rumor that they may dismiss him for the weekend with instructions to return for the surgery on Monday.  The deciding factor on that will be how much weight he can gain between then and now.  His diet calls for at least 1,000 calories per day and so he gets to eat all the good stuff while other kids are stuck with broccoli and brussel sprouts.  In addition to the fatty foods and multivitamin, he has an additive called Duocal put in all his soft food like mashed potatoes and applesauce in order to boost their contents and give him the maximum benefit.

We’re still taking each day on its own but it helps that Trey is happy and doing well playing with his toys and taking walks around the hospital.  With luck we’ll be back home by the weekend.

Trey turned 13 months today!

Today was a long day.   It all started late yesterday when it was discovered that Trey was aspirating his formula.  Aspirating is when part of the food or liquid is drawn into the lungs instead of the stomach.  After running some tests, they decided that he only did it with thin liquids.  The temporary treatment is to take him off of his bottle and add a thickener to the formula.  Once this is done, about the only way he’ll “drink” it is with a spoon.  Trust me, it takes a while to spoon feed 6 ounces of formula.  After that, they set midnight as the last time he could eat or drink anything in preperation for his surgery.  Fortunately the also put in the IV at that time so he didn’t dehydrate and it also helped him feel full.

The surgery was supposed to be at 11:00 this morning but due to a very busy OR they didn’t even come get him until noon.  The surgery then got underway about 12:45.  It didn’t take too long, in fact the pre-op and post-op processes took longer than the actual surgery.  The good news about the surgery however, is that the adenoids were NOT all that bad and they only had to remove a very small amount of tissue.  Slightly more than it will take to test for a disease called PTLD (more info here).  They’re not really all that concerned about it but since Trey did test positive for the Epstein-Barr virus they want to rule out anything more serious.   The results of this test should be back by early next week at which time they’ll make a determination as to which way to go on this one.

The bad news about the surgery is they ruled out the adenoids as being the cause of Trey’s breathing problem.  They were able to look at his larynx and saw that it is inflamed and raw from reflux.  Reflux is when the contents and acid in your stomach rise back up the throat.  Being all swollen, this has now become the leading candidate for his respiratory ailments. They plan to treat this with Prilosec and PPI (protein pump inhibitors) medications.  The next week or so will tell the tale on this one.

As of right now Trey is spending the night in PICU so they can monitor his breathing after surgery.  Tomorrow is anyone’s guess.  If thing stay the same, we’ll stay in PICU.  If they get a little better, we’ll be back in general pediatrics.  If they get a lot better we might get to go home.

We’ll try to keep everyone as informed as we can.

Well, we hit the first major bump in Trey’s road to recovery. For the last couple of months Trey has had this virus that noone can seem to define. He ran a couple of high fevers and his breathing became very labored and hoarse. About a week ago, he seemed to shake that bug and started to act like himself again. But also about that same time we noticed a swelling begin to show in his abdomen. We weren’t too concerned but when it continued to get larger we decided to take him to the pediatrician last Saturday. While they were concerned there didn’t seem to be any alarm but nonetheless they took some measurements and said they would look at him again the following Tuesday when we were scheduled to come back for his one year shots, which had been delayed due to the mystery virus. Tuesday arrived and the measurements they took of him were actually less than Saturdays results. Still, the Dr decided that it was prudent to call UNMC with the results.

What happened next threw us all for a loop.

UNMC asked that we immediately bring Trey to Omaha where they would admit him to the hospital for an ultrasound and X-rays. About three hours later we were in Omaha hoping for a one day stay. Later that day, he was taken to radiology where they x-ray’d his chest looking for fluid or irregular gas patterns. Neither showed up. The ultrasound revealed only slightly more. There was/is some fluid in his abdomen but fortunately at this point it is still clear which means that it is not infected and OK to reabsorbed by the body. It doesn’t seem to be swelling in any area except his tummy which is a good thing and that will apparantly clear itself up shortly…or so they think.

Now for the crazy part.

Remember the labored and hoarse breathing that has been going on since November that nobody thought was a big deal? Well, apparantly now it is. Treys liver team is very concerned about that and it has taken center stage quickly. After doing a couple of blood draws and being vistied by an Ear Nose and Throat specialist it has been determined that the likely culprits are his adenoids. Adenoids are part of the immune system. They are located in the back of your nasal cavity almost directly behind your nose and they act to trap inhaled bacteria and viruses. In patients that have had transplants it is not uncommon for them to become infected because of the immunosuppresscent medication that they take in order to fight rejection. It is also somewhat common in non-transplant kids for them to become infected as well. Either way, the best and most certian way to take care of infected adenoids is to remove them so that is what they have planned. On Friday morning Trey will go into surgery to have an adenoidectomy. They tell us that the surgery should only take about a half an hour or so. There is a small chance we might get to go home later that day but they have no intention of letting him leave “until we get the breathing back to normal” so let’s all hope that this is the cause so we can get outta here before the weatherman and Mother Nature dump on us.

KETV Channel 7 was covering Husker kicker Jordan Congdon leaving the team and wanted to talk to us about liver transplants.

Click the link to see the video on their website.

http://www.ketv.com/news/10683050/detail.html

It hardly seems like it’s possible but 2006 is already over.  For us it seems as if this past year has been such a blur.  In just a couple of weeks it will one year since Trey had his first surgery at Children’s Hospital in Omaha and we really didn’t have any idea what was coming up.  We knew something wasn’t right but not exactly what is was yet.  What a difference a year can make.  Today, Trey is doing well.  He is almost back to his old self again following his recent bought with this virus.  In fact, we still don’t know exactly what it was but it seems to be finally wearing itself out.  He’s finally get back around to playing with his toys and eating normal amounts of food again.  Hopefully now he’ll start putting on a couple of pounds (he weighed 19.6 the other day at the Dr). 

The good news through it all is that it seems as if his liver and everything related to the transplant has remained good.  His numbers were slightly elevated thislast week but nothing to be concerned about.  He also faced another round of RSV shots which are always not fun for him (two big needles in the leg) and not fun for us (about $1,000 per needle) but the idea of him getting RSV with a weakened immune system makes it a non-issue.

As far as the rest of us go Emma and Anna are both back in school after the Christmas break…and not a moment too soon.  With the 8 inches of snow we received on News Years Eve it was getting a bit cramped in the house with everyone.  Not much else has really been exciting lately but I’m sure we’ll come up with a few thiings as we go along.  Stay tuned this weekend and I will get some new pictures up from Christmas of Trey, the girls and the families.