Emotional yo-yo!

Sunday night Jadon was admitted to the cardiac critical care unit because of severe lethargy and low blood pressure.  On Monday morning after a blood transfusion and some time on a blood presser, he was doing much better.  He was followed up with several ultrasounds and x-rays and since he was doing so well, was moved up to the cardiac floor early Tuesday afternoon.  It was nice to have such a short stay in the CCCU.  

Our relief however was very short lived.  In the evening, Jadon's blood pressure was extremely low once again.  Less than 8 hours after leaving, Jadon was once again admitted into the CCCU.  This time he was put onto 2 different blood pressers and ended up on a morphine infusion due to his obvious pain and discomfort.  He has had several other diagnostic tests to help figure out what the issue is.  The telescoping of his intestine has corrected iteslf, but tonight he sits in the CCCU, lethargic and uncomfortable.  The medical team is not exactly sure as to the source of the issues, but are currently querying pancreatitis, given his pancreas enzymes are elevated.

Through this all, Jadon has been able to remain on room air, which is encouraging.  One of the tests was an echo-cardiogram (heart ultrasound).  It shows that there may be some small improvement in heart function through this all.  We will take whatever positives we can during this difficult past 2 weeks.

On a positive note, Jadon is featured on some huge monitors around the hospital as part of an advertisement. The woman in the picture is was awarded a "Smile" award and asked for Jadon to be in the photo with her. To bad he had just woken up and did not smile. ( The pic was taken in the summer when he was more fluid overloaded)

Back to the ICU...

This past week has been tough!  After the dilatation did not work, the plan has become to try an reverse the fundoplication, with hopes that once the wrap is undone, Jadon will be able to cope with his secretions.  There is still question of whether they should redo a loose wrap, a partial wrap or no wrap at all.  Of course, if the fundoplication is undone, the likelihood is Jadon will once again experience severe reflux.  In view of this, the medical team decided to change his G-tube (tube sticking directly into his stomach) into a GJ-tube (a tube through the same hole, but passing through the stomach, through the duodenum and into the jejunum).  The thought is that the feeds entering directly into the intestine will decrease the acidity of the stomach and thus decrease the reflux once the fundoplication is taken down.

This change in feeding tube was done on Tuesday and once again, it was tricky to get the procedure completed on Jadon.  I asked the radiologist who completed the insertion about the danger of intussusception (when the small intestine telescopes on itself), a potentially dangerous issue sometimes triggered by a GJ insertion.  I was told that it mostly happens with younger children/infants and it was very rare in someone Jadon's age.  I should have taken that as a warning!

On Wednesday, Jadon was showing some abdominal discomfort and was taken for an x-ray and ultrasound.  They discovered some fluid collections around his stomach and they were querying a perforated bowel.  I rushed to get down to the hospital in the evening as it was indicated that an emergency surgery was quite likely.  An upper GI study under fluoroscopy ruled out a perforation and so that was averted though the adrenaline rush to the whole family was not!

Over the weekend Jadon was more lethargic, to the point where he spent all day Sunday sleeping and/or just hanging out in my arms, which is NOT like him at all!  He could not even be talked into a walk to the playroom or splash with water in his bed.  Since all his vital signs were good, the staff kept an eye on him but there was nothing to intervene on.

At shift change, Jadon's blood pressure was quite low.  General surgery, GI and CCRT were called.  Given his lethargic state and continued dropping of blood pressure, they wanted to take no chances on Jadon and we were once again admitted to the ICU.  Jadon received another blood transfusion and blood pressers for a while to get his pressure up.  He looked quite good in the morning and back to his mischievious self, but his stamina was gone.  By the early afternoon he was quite lethargic again.  With several more x-rays and ultrasounds, they determined that yes, of course, the rare instance occured.  Jadon had intesusseption.  So they have removed his GJ-tube and replaced it with a G-tube. (one step forward, one step back).  He is feeling a bit better now but still in abdominal pain.  They will continue to monitor him and hope that he will be over this in the next few days.

As we were admitted into the ICU, we were told what room number we were going to.  Sara looked at me at said, "Figures, that is the ONE room of the 8 possible rooms in the cardiac side that we have not been in yet!"

Remembrance Day... we will never forget!

November 11th has a special significance for us.  16 years ago today, Sara and Steph Parent became parents for the first time as lovely Rykauna Doris Parent came into the world.  Our lives have been one great adventure ever since!  She has always been a wonderful and intriguing child.  We recall her telling us before her 3rd birthday... "I want to have a sleepover birthday.  The parents can come drop the kids off but they can't stay!"  She went on to arrange the sleepover to a rousing success!  She has not stopped aiming for the stars since.

Rykauna makes us proud.  She has grown into a wonderful young lady, full of compassion, creativity, optimism and joy of life!  She certainly adds a spark to our family!  She has matured tremendously over the last difficult year.  We are truly blessed to call her our daughter!

Rykauna being a wonderful jiejie!

Dilatation did not work...

So on Friday, Jadon went in for another procedure.  The plan was to insert a balloon attched to a scope down his esophagus to the spot of his fundocplication.  Then the balloon was inflated to try and dilate the site of the fundoplication to allow for secretions to flow through better.  Jadon had to be sedated and therefore had to be intubated again.  The procedure went well but accomplished nothing.  The doctor who performed the procedure indicated that the tightness of the fundoplication was not the issue.  The medical team was not surprised to hear this as this was somewhat expected but they had hoped that it might help.

So, we are now on to the next plan.  They team is talking about several different drugs that would likely help the motility of the esophagus.  Whether these need to be given for a while or to perpetuity is anyone's guess at this time.  There are a few different options with their pros and cons and we are waiting for their recommendation.

Meanwhile, Jadon is doing fairly well still attached to the replogle tube.  He has started retching a bit during feeds once again and the team is still struggling a bit with keeping his fluid balance down.  Overall he is in good spirits and we love the little fellow.  Time will tell what the long-term prognosis is.

Jadon playing with one of the therapy dogs

Making one of his many faces!