Monday, 23 November 2015

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!"

Wednesday, 11 November 2015

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!

Tuesday, 10 November 2015

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!

Friday, 30 October 2015

Happy Gotcha Day!

It's hard to believe but Oct 29th was the one year anniversary of Jadon joining our family. 
Creative Rykauna made a little poster for Jadon
It has been a wild year with lots of medical drama but one thing is for sure....we are all head over heels in love with this boy who is medically fragile but who is a true heart warrior. He has been feeling better the past few days and engaging in lots of sensory play...including this bowl of spaghetti noodles the child life specialist made him. His mischievous grin and love of life are evident even when confined to a bed for so long.  
 Next week he will hopefully have his fundoplication dilated as per the decision made Thursday by his multi-disciplinary care team. The round table discussion had : Cardiologists (yes, three were there, general surgeon, ENT surgeon, gastroenterologist with her GI fellow , heart function nurse practitioner and her cardiac function fellow, PT, OT, Complex Care Pediatrician, Complex Care Nurse coordinator, and Steph and I. Jadon had a GI scope over a week ago but they passed the scope through the fundoplication site without dilating it in hopes that would be wasn't. The team is hoping dilating the fundoplication wrap site will improve movement of fluids from his throat to his stomach. Praying it works... complication-free.

Friday, 23 October 2015

Back out of Critical Care for the ????th time!

Jadon just got moved back up to the Cardiac Floor this afternoon.  He has been doing better to the point where they took off all breathing help on Wednesday.  The main difference is they have been controlling his secretions using a replogle tube... basically a suction tube partway down his esophagus which is attached to constant suction.  This way his secretions never get an opportunity to build up.  His SATs have been sitting around 95% which is higher than they have been for a very long time.
Jadon's favourite activity... playing with water!
So, they have determined the cause of Jadon's breathing issues leading to his cardiac arrests.  It is a build up of secretions (mostly saliva) in his esophagus, that when he lies down, become an issue in his trachea and occlude his airway.  The problem is that they do not know the cause of the secretion build up!  They have eliminated all of the more common causes and have some tests ordered and a multidisciplinary team meeting planned to discuss the cause and what they can do to deal with it moving forward.  The replogle tube works, but that is not a long-term solution.
Jadon with no nasal prongs - just the replogle tube (and PIC... and g-tube... and EKG leads...)
Million Dollar Smile!

Saturday, 17 October 2015

Some answers but lots more questions.

Since Jadon's cardiac arrest on Sunday night he has undergone several tests to see if the medical team can determine the cause of his respiratory issues that have really been with him since his fundoplication surgery in early September.

The saliva scan indicated that he was pooling secretions above the fundoplication.  An endoscopy was done to see if the wrap was a little bit too tight and to dilate it if that was the case.  However it was shown to be fine and the opening was appropriate.  Thinking perhaps that there was a A flexible and rigid bronchoscopy were then performed to look at Jadon's trachea.  They found some 'interesting' structures (what isn't interesting about Jadon) but nothing that would indicated reasons for the obstruction/secretion build up.

The cardiac critical care attending physician has indicated that the team plans to continue to try and figure him out.  He was taken off the ventilator yesterday and is breathing on his own with some oxygen again.  He has also started coughing on his own which is encouraging because he has not been doing much of that over the past month.  At the very least the cough can help move secretions along.

So once again Jadon's complex condition raises many questions but provides few answers.  We continue to pray that things can be figured out and he can come home safely with the ability to protect his airway.
Singing Twinkle Twinkle Little Star... this is the "like a diamond in the sky"

Monday, 12 October 2015

This Sunday Evening... another Cardiac Arrest!

Jadon has been in the hospital since last Sunday.  He has been on hi-flo oxygen to maintain proper oxygen saturation.  Each evening he has secretions build up and rough breathing sessions.  Over the last few days he has had a lot of stomach pain, discomfort and bloating after his feeds.  It was decided last night to send him to x-ray to make sure that the g-tube was well placed and that there were no specific issues.  While there, he suddenly got significant respiratory issues and ended up having another cardiac arrest!

He is currently stable on the ventilator in CCCU and seems neurologically intact, for which we are thankful.  He was asking for a saline ampule to play with and for a massage.  The team hopes to scope his fundoplicatoin site either today or tomorrow to slightly dilate it and allow for him to swallow his secretions.  They will also perform a bronchoscopy to look at his trachea.  Praying the team is given wisdom as they continue to treat his very complex condition.