Congenital Diaphragmatic Hernia (My Story)

Posted on August 17, 2009

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Oh the joys of having a baby.  Their first cry… a sign of the new life you have brought into the world.  Ten little finger and ten perfect toes on the most delicate thing you have laid eyes on and you instantly fall in love.  Never in your wildest dreams could you imagine something being wrong with this perfect human being now lying peacefully in your arms.  Your bundle of joy grows and milestones are reached… three months, six months, one year and then they grow up to be the rambunctious children they were meant to be running here and there.  Of course they get their occasional bumps and bruises and sometime the small broken bone, but you could never imagine something life threatening to happen to this prefect being.

This is the way many parents imagine their children’s lives to be.  Of course they will defy you and test your boundaries but they are still one of the loves of your life.  On July 8, 2009, this is the date that everything I thought was true would be tested (along with my sanity).

12:00p.m. – It started off much like any other day. Wake up, eat, do some house work, and take a trip to the pool just after noon.   But this was not going to be our TYPICAL day.  About an hour into our swimming my five year old son, my baby boy, ran from the pool cold and decided to sit for awhile and get some cookies from the concession stand.  He ate three of four of them before deciding to go back into the pool.  A short while later, here he is running back complaining of a stomach ache.  I explained to him that it would go away and that he just needed to sit down.  Little did I know, this stomach ache was going to turn into an adventure I will never forget.

2:00p.m. – The pain got worse, and he complained that breathing was even painful.  We decided to pack it up and get some pepto for his stomach.  He took a chewable pepto and crouched down for five minutes before he demanded that I take him to the doctors.  And that is what I did.  The ER in our town is not huge, and they get busy most days but they took him in immediately because of the amount of pain he was in.  They gave him some medicine to help the pain and waited for it to subside before taking him for some x-rays.  Once we got to radiology, they took approximately 4 x-rays of his chest and stomach and we waited.

3:00p.m. – Usually results are not given so quickly but probably 15 minutes later the doctor was in the room asking if my son could stay with the nurse while I came with him.  We walked down a few hallways and as we are walking he asked “Has your son ever had chest x-rays before?”  I couldn’t recall so they did a search on their computers and found that he had one in 2005.  He then says “Here is the reason I ask.”  Now I’m not a professional x-ray reader, but what I saw even astounded me.  Below you will see two images.  The first one is similar to what the doctor was showing me and the second is a normal healthy chest x-ray.

xrayCongenital Diaphragmatic Hernia vs. Normal chest x-ray

As you can see, the two are very different.  I didn’t know exactly what I was seeing, but I knew something was wrong.  He started to tell me what I was looking at.  Basically, my son’s stomach was in his chest.  All I could think (as lame as it may sound) was OMG!

4:30p.m. – Considering the size of our ER, we do not have pediatric surgeons on hand to deal with children with problems of this magnitude.  So I was told that I had three options.  The first was to lifeflight him to Danville, PA to the Geisinger Medical Center or to the Hershey Medical center in Hershey, PA.  Or we could take the ambulance or I could drive him to either of these two places.  I opted for the ambulance.  I then had the daunting task of calling his father, the one man that I do not talk to due to our troubled past (drug and alcohol abuse and many other problems).  I tried to hold back tears while calling him but after I got on the phone with him all I could say was “I need your help at the hospital”.  I couldn’t get anything else out of my mouth except “uh-hu” or “no”.  So as he is asking me questions to narrow down why he was needed, I’m still sobbing because I never in my life thought we would be taking my five year old son to a hospital to potentially have surgery.

5:00p.m. – He showed up 10 minutes later.  Keep in mind the two of us at one point wanted to rip each other’s throats out.  He saw me and said I looked like I needed a hug, and to tell you the truth I DID!  Within an hour the ambulance arrived and I was in the back with my son on our way to Danville, PA.

0708092026-01 Ambulance Ride

6:45p.m. – We show up at the hospital and at this point my son has not eaten or had anything to drink since lunch.  It’s simply impossible to tell a child this young that they cannot have food or water and for them to understand.  It was one of the hardest nights of my life even with just this simple fact.  I was yelled at while he was in pain and as much as I wanted to give him something, I just couldn’t.  So we sat and waited for the surgical team to show up, and I convinced him to watch a little television to keep him content.

9:00p.m. – The pediatric surgeon showed up and told us the disk with the x-rays from our local hospital were too small to tell what was going on but she did say it looked like he had a herniated diaphragm.  She wanted to get a nasogastric tube down his nose to see if it would help relieve some of the pressure.  Do you know how hard it is to tell a young boy that they are going to shove something down his nose and he is going to have it go down his throat to his stomach?  Darn near IMPOSSIBLE!   But he was a pro and it all went well.  Of course with having something running down his throat he felt like he was going to throw up every few minutes.  As we waited for the tube to possibly take effect, they got their mobile x-ray machine to come take x-rays of his stomach a second time.

11:00p.m. – Finally the surgeon came back with some news.  As she suspected, his stomach was in his chest and they assumed it was from a herniated diaphragm.  They called up to surgery and had them prep a room and immediately we were wheeled up to the 2nd floor to get ready.  Due to some other complications we had to wait to begin surgery.  As we were waiting my son had gotten to the point where nothing would console him and his hunger and thirst.  They decided to give him some medication to sedate him partially to give him some rest before the surgery.  The surgeon asked me if I wanted to see the new x-rays, which were exactly the same as before.  She explained that if the stomach was not getting oxygen that when they cut into him, they would have to cut some of the stomach out also (a very scary thing to hear).

1:45a.m. – The time had arrived for him to go back to the operating room as I was left to my thoughts in the waiting room.  Two hours and 15 minutes of waiting and thinking.  What had I done wrong?  What should I have done?  Why this was never caught before? Would they be able to repair the damage?  How could this be happening to me?  And the tears started again, but this time I was all alone in a waiting room.

4:00a.m. – By this time I think I managed to get about 30 minutes of sleep.  I was awoken to the sound of the surgeon coming into the waiting room telling me they had finished and everything was good.  They had to cut through the left side of his stomach and were able to see the hole in his diaphragm.  Because of this hole this stomach, small intestines, and portion of the kidney were up through it.  The stomach was caught up there and twisted so badly that it was about three times the size and was unable to release gas and other things like it should have.  During the surgery they pulled everything down to place, put a few stitches in his stomach to hold it in place and the diaphragm was sewn shut.  After this, they placed a G-Tube (feeding tube) through his stomach.  This was done as an extra precaution that his stomach would not twist up again.

5:00a.m. – We finally got settled into a room in the Janet Weis Children’s Hospital where I was able to room with him for his stay.  They told us that we would be staying there for approximately seven days.  For him to return home he would have to complete a list of things.

  1. Get up and walking around 5 times a day
  2. Pain controlled
  3. Peeing on his own (after foley removed)
  4. Eating & Drinking
  5. G-Tube care teaching

0709091006-00Afternoon July 9, 2009

His list quickly got checked off.  What was supposed to be a seven day stay quickly turned into a five day stay.  By Monday July 13, 2009 we were on our way home but this is NOT where our story ends.

On the evening of July 14, 2009 I had a funny feeling that it was going to be a rather long evening and I was right.  At 11p.m. I was woken up by my son telling me he had a bad dream.  I quickly got him under control and went back to bed.  At 1:30a.m. I was woken up again by my son in hysterics.  He said he was in the bathroom and went back to bed and that his G-Tube had come out but that he had put it back in and that “everything is OK”.  I was a bit skeptical but asked him some questions about it.  He told me it did not hurt when it came out and that it did not hurt when he put it back in.  From the lessons I had learned on Monday about the G-tube, it would have hurt to have it come out because at the end inside his stomach there is basically a balloon they inflate to hold this tube in the stomach.  The balloon is essentially larger than the hole in his side where it would come out and in essence would HURT to have it actually pull out.  Not wanting to have anything get infected or happen I called the on call surgeon.  They asked if I had seen the end of the tube in which I told them NO because he would not let me look at it.  They told me to wait till morning and call into the office in the morning to talk to the surgeon that did the surgery.  I hung up and decided that we would change the dressing that was holding the tube against his body.  He made one sudden move and out it came.  I was in shock and didn’t know what to think.  How could I doubt my own son?  The boy that knew he needed a doctor to help his tummy out!  The boy that defied the odds and got to come home two days earlier than expected!   I called them back again and they told us to come to the ER.  I got on google maps to get the best directions for our 1 ½ hour drive to Danville and off we were.

We arrived in Danville about 3:30a.m. and they took him into a room.  When we arrived the tube was not out of place so they were sure that it was just some misunderstanding.  They decided to do an x-ray where they put some fluid into the tube so it would show up on the x-ray.  We got him on the table and before we even started the procedure, the tube came out.  NO BALLOON!  That ended that procedure right away.

We then went back to the room and they attempted to put the tube back into place and found that the balloon had a hole in it which caused it to deflate.  At this time, I was getting so nauseated by watching them try and shove this tube back down into his stomach, that I had to remove myself from the room.  When I returned, they had a tube in place yet my son was screaming from being in so much pain.  They had to see if the tube was in place so they reordered the x-ray.  We arrived in radiology and the dye was injected as the x-ray is happening.  Unfortunately, the tube was NOT in place but this was not bad news.  The surgeon decided to keep the G-tube out and keep him for observations to make sure the stomach would stay in place.  Worse case, we would need to have more surgery to place the stomach back into the proper place.  So by 11:45a.m., we were back in a room at the Children’s Hospital.

Everything went well, and we are currently home minus the G-tube trying to get back into the normal routine.  He has a check-up appointment with his surgeon on July 30, 2009 and hopefully all will still be well.

stitches1His stitches! The SpongeBob Band-Aid is where the G-tube use to be
and it is healing up nicely.  Now to get all the tape marks off of him!

For more information about Congenital Diaphragmatic Hernia awareness, visit http://www.cdhsupport.org/

stitches2One month after surgery and all better

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