Nissen and Mic-Key

Well, it is here. Time for the nissen fundoplication and mic-key gastronomy surgery. This morning started off early. We were up and going by 3:00am and nervous as can be. We arrived at Vandy at 6:00 and met with the anesthesiologist, surgeon, nurses and assistants. I had a million and one questions to ask. Some I wish I had not asked. Ignorance is bliss--right? Honestly, I even told Jeff we can still leave, they haven't started on him yet. Part of me was very serious about taking him and running.

We were told to expect John to have breathing issues during surgery and it is likely he will be in the ICU on a vent for sometime. His breathing likes to act up after most procedures. This was a huge concern for him.

Our first update came after about an hour into surgery. The nurse stated his vitals are normal and she will call with another update in another hour. Second update...about an hour later "Everything still going fine, Dr. Rauth still working and will call with another update." Then we waited over two long hours before we heard any word from his nurse or doctors. Jeff slept through every update, sure was wishing I could have done the same. I thought several times that I was going to have a full blown panic attack, because I just new something wasn't going right and that is why it was taking longer than expected. Finally, our name was announce to go to conference room 3.

We entered the conference room and waited anxiously for Dr. Rauth. As he began talking, he apologized for the time it took to complete the surgery. Then went on to explain when they opened him up he noticed something "odd". This something "odd" was called Morgagni's hernia and pretty large. We went on to learn that this is a rare hernia with and can be life threatening- 45-62% mortality rate. What if we had not done this I asked? He went on to explain all the testing we have already had would not pick it up because it is difficult to diagnose due to it's location. He said most doctors would see this as pneumonia on X-ray and would not suspect this hernia. Now--is this a God thing or what? Went in for a surgery I really didn't want him to have and a blessing I didn't know I would receive occurred. Anyway, he went on to complete the nissen fundoplication and g-tube surgery and it went as expected.

In recovery, John had rapid labored breathing (not unusual for him) and attempted to pull out the new g-tube and tape off his incisions. Needless to say, he was fighting mad. So, he is now in arm restraints--no-nos.

He is resting now and we will try to feed him in a couple of hours. Guess we will see how that goes.

It's been a rough January/February in the family household. Sickness has struck more than once. John Andrew was scheduled to have the nissen fundoplication and mic-key surgery (to help with GERD) in January but came down with a virus, bronchiolitis and croup. So, obviously that was canceled at that time, rescheduled for February 14. Really hoping his is well enough and it won't have to be rescheduled again.

The nissen fundoplication surgery is where the upper curve of the stomach is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach which stops acid from backing up into the esophagus. This allows his esophagus to heal. It will also be very unlikely that he will vomit again for the rest of his life. This is a permanent procedure and cannot be reversed.

I have really had a hard time accepting he needs this surgery. Lots of praying, talking and second, third, fourth, fifth and sixth (second opinions) from specialist. All say he could benefit. It has a pretty long recovery period and he will also have a feeding tube or mic-key placed in his stomach. We will have to learn how to feed him using the mic-key and relieve his stomach contents through this tube. Not sure how that will go yet but it should only have to be used about 3-4 months. I have been told it won't be as bad as I think. This will be new for us. In the past, when he has needed help with feeding, the tube was placed through his nose and into his tummy.

I had no idea what GERD/acid reflux could do to a person. For John, it effects his breathing, sleep and heart. John has severe sleep apnea and heart disease. A sleep study showed he would stop breathing more than 10 times every hour for up to 20 seconds each time. Many nights Jeff and I are up shaking him and telling him to breathe. In July, John had a T&A and tubes to try and correct his sleep apnea. He almost died from this surgery. He aspirated due to not being able to cough up phlegm which caused pneumonia. He was placed on a breathing machine and in the ICU at Vanderbilt's Children Hospital. He was at Vandy for two weeks before he improved enough to come home. Thinking this would be the cure for his sleep apnea, I was excited but later proven wrong. It helped with his sats and O2 requirement but not the apnea. A follow-up sleep study showed his OSA was only slightly improved and more testing or surgery would be necessary. A bronchoscope, exploratory surgery, ph Probe and trip to the CADET clinic at Vandy shows he could benefit from the nissen and so here we go. The doctors feel now the GERD is causing him to stop breathing at night.

In January, he developed seizure like activity. This is not uncommon for children with DS. I was able to film his spells, which include his eyes rolling back, body stiffening and falling forward. The neurologist on call said it looked like a series of seizures but the EEG did not show he was having any seizures at this time. Once again we were told it could be GERD and not necessarily seizures. We see a neurologist on Tuesday, Feb. 7 to follow up.

John Andrew sleeps hooked up to monitors. I am able to monitor his oxygen saturations and heart rate carefully. I watch these numbers multiple times every night. His heart rate has never been a problem but this past month his resting heart rate is dropping into the 40s. We went in for an EKG and echocardiogram which we do every few months to follow his Atriel Septal Defect (holes in his heart). Like every echocardiogram, his holes in his heart are not closing and this time his tricuspid regurgitation and pulmonary pressure are worse than ever before. The pulmonary pressure has never been a problem. This can cause permanent damage to his heart if no intervention is done. His cardiologist said it is likely caused from his sleep apnea and something must be done. Again, recommendation for the nissen to correct the GERD, which should help the apnea, which should help his heart/pulmonary pressure. He is still facing heart surgery later this year.

All of this goes back to reflux. Who would think something as simple as acid reflux could impact so many parts of the body? They cannot tell me for certain that this will correct the apnea but it should. If this does not work, the next step may be to remove part of the palate in the back of his mouth and open up his throat to see if that will allow him to breathe better at night. Ughh, the thought of that makes me feel sick.

He is ONE TOUGH COOKIE! Tougher than most people I know.

Enough medical stuff. I know God will be there on Feb. 14th just as He has been on the other 14 hospital stays my little guy has endured. John is so much stronger than his mommy. I am asking for all my prayer warriors to start praying now. Pray for John to have a speedy recovery with NO complications. Pray for his brother and sister that they will understand why their mommy is gone again and not at home with them. Pray for my husband that he will be able to go back and forth from the hospital safely to help with my children. Pray for me, that I can juggle my career, family responsibilities and take care of John Andrew as he needs.

I will continue to post updates and pictures as we more forward.