After 7 months with the tube....

Make plans if you want, but Josiah does things his way and on his time (and God's plans, of course).  After 5 weeks of not using the Gastrostomy tube, Josiah's specialist had decided he was approaching the removal of the silicone "friend".  A smaller tube had been ordered and we were on track to receive it by Tuesday June, 28.  Once the tube was in our possession we would need to extract the old one and insert the smaller one.  The method behind this; the g-tube site (called the stoma) would begin to heal around the smaller tube, causing the stoma to shrink in size.  Then after 4-6 weeks this tube would also be removed, and the body would do its job in healing itself the rest of the way.  Guess Josiah did not like that plan!
Today, when I picked him up from the nursery after church I noticed that his tube was sticking up higher than usual.  When I checked it, it had completely dislodged.  I got out my medical bag and got the supplies to try to place it back in.  Noticing that the site was closing up, I began to worry and knew that we needed to have the tube replaced into the crater.  It was rapidly closing and I could not get the g-tube back in place, even with great force.  I packed the wound with sterile gauze and taped it down.  Scooping up my screaming little man, I rushed him out to the van and sped to Chippenham Hospital.  Once there, they took him back right away and begin to asses the situation.  Pediatric surgeons were called and it just so happened that Josiah's surgeon, Dr. Lanning, was on call.  He is familiar with Josiah's history and was able to give a good perspective on the situation.  The options I was given for his treatment where as follows;  put a catheter in place and tomorrow, have the site dilated to get the tube back in.  Option two, allow the stoma to heal on its own and deal with the leakage and irritation until it closes.  Or the only other option, surgery.  The surgical procedure would of course, require anesthesia, a breathing tube, and pain relief following the procedure.  I have known for a while that surgery would be our last option, which is why we had opted for gradually sizing down with the tubes until the body could naturally heal itself.  I just could not justify putting him through further pain and time in the hospital for them to dilate the site and put the tube back in, when it has not even been utilized in over a month!  With those facts, we knew the best choice was to let the site heal on its own and eventually close up all together. 

Right now there is an open tunnel in his abdomen that goes down into the stomach.  As you can imagine, there is nothing stopping the contents of his stomach from traveling that path.  When he eats or drinks, the substance will take the path of least resistance.  We have to keep the opening covered with gauze and taped down with pressure so that the stomach contents are not able to easily escape.  Doing so, will force the food and formula to take the natural path and will be absorbed for maximum nutrition.  We need Josiah to continue to thrive in weight and development.  He is doing so well.  Two tiny little white teeth have popped right on through his bottom gum, right in the middle.  It makes that little smile of his, that much cuter!

June 18th, the Lord called another wonderful woman home.  Nanny passed away after a long struggle with Alzheimer's Disease.  She was such a huge factor in Chris' upbringing and childhood and he lived with her for 90% of his life.  Christopher was absolutely the love of Nan's life.

Mary Christine Cimburke

February 8, 1937 - June 18, 2011

Always loved, always remembered, always cherished. 

The first time they met

The one and only time Nanny had these 3 together.  Thank you God for each day we had with her.

...glad that is behind us!

10 minutes into the procedure, the nurse comes out to get me and I instantly got nervous.  I was relieved to know that all they needed was instruction on how to release air from his g-tube, and that nothing was wrong.  This was his Ear, Nose and Throat doctor; gastric tubes are not his specialty.  So I sent the tubing back to the O.R. and walked them through it on the phone.  I so badly wanted to go back there and for a moment I thought they were going to let me!  Haha stupid liability laws!  If you know me, you know by now that I have become fascinated with the medical world and would jump at the opportunity to be in that room with my son.  Back out to the waiting room I went.  His normal support system was there, waiting for the procedure to end, as they have done so many times.  My 85 year old Grandma has sat and waited in many waiting rooms for Josiah.  From birth, to the latest procedure, she is always there and amongst the most relieved to see him recovering.

Dr. Salley (our family ENT and by far the most trusted) came out to let us know that the procedure went well and that he was going to be going to recovery.  Then the nurse came out to get one parent to come back for Strong Man.  Poor Chris, I am always the "one" but he knows I would go crazy having to wait any longer.  When I got back there he was moaning and making the same noises as before.  Struggling to breathe and having a hard time recovering, just like his last surgery.  I had brief flashbacks of the nurses and doctors resuscitating his lifeless body and was praying hard that we wouldn't be reliving those events.  He had a few strong apneas, but he maintained his heart rate and just required oxygen.  I was instructed to try to feed him but I was apprehensive.  I listened to the nurses and offered him the bottle, he was aspirating it so I stopped right away and put it in his tube.  They gave him tylenol and he began to settle down.  With his recent history of Morphene sensitivity we did not want to give him anything else.  So many pain medications derive from Morphene and we were not going to risk it for the minimal pain of an adenoidectomy.

Admitted for observation, we went up to the peds floor where we were once again greeted by all of Josiah's "girlfriends".  He loves his nurses and they have truly watched him grow up, he is more than just a patient, he is Josiah Cimburke!  Once we got settled into his room I noticed his face getting really red, his saturation was dropping a bit but he still had blow-by oxygen. He was getting more red and his forehead looked as though it was swelling up.  I went out into the hall to grab someone and they took his temp and checked his vitals and nothing seemed to odd, except the fact that he looked as though he had just got back from a week in the tropics!  His nose, mouth and bottom of his ear kept their natural color.  This was something we had never seen.

 

After talking to the doctors and anesthesiologists they figured out that it was a reaction to a drug called Succinylcholine that was used to open his airway.  After surgery, when they removed the breathing tube, Josiah had what is called a laryngospasm.  Basically his throat was closing up and he was able to get air out but not in.  They administered the drug and he was fine, but the flushing was a reaction from it.  He was given Benedryl through his IV and got his color back rather quickly.  We are forever encountering new things with Josiah and I have a feeling he is going to continue to surprise us all of his life. 

The next morning, we were discharged.  His sleep study was scheduled for May 31st, I received a phone call from the hospital and took the appointment they offered.  After arriving last night and spending 2 hours in the hospital, we learned that the sleep study was to fit him for the oxygen he would have at home.  I told the nurse that we were not getting that because Josiah had surgery.  This sleep study was to confirm that he was no longer having troubles breathing in his sleep.  They called the doctor and after speaking with him we decided to cancel and reschedule his follow up sleep study for down the road.  I do not see the purpose in putting him on a CPAP machine. Why disturb his quality of life, when he just had surgery removing the obstruction that was the culprit of his obstructive sleep apnea.  He is still on his apnea monitor and we will be alarmed to any lengthy pause in breathing that he encounters. They could not do the follow up sleep study to confirm that surgery was a success because he just had surgery within the week.  "Confirmation sleep studies" are not to be done until 6-8 weeks post op.  So we will be going back for that at a later date.  Looks like Strong Man will be on his apnea monitor til his 1st birthday, like his sister.