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 enough...it 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.

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!

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"

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.

Unfortunately, a short stay home!

So Jadon has been readmitted to the hospital with breathing issues.  Since coming home on Wednesday he was gradually needing more and more oxygen.  Finally on Sunday evening we brought him in to Sick Kids as he was having shortness of breath, effort of breathing and was struggling to keep his SATs up.  He spent the night in emergency, was admitted to the Critical Care around 6 am and moved up to the cardiac floor around 2 pm.  He is on hiflo humidified oxygen and is resting relatively stably.  We are hoping and praying that this is just a short stay as they work through his issues.

Jadon is out of the hospital, but the hospital is not out of him!

Having Jadon home is a blessing, but has also proved to be a lot of stress and work!

Jadon gets fed every four hours (but at least we get to skip the 1:00 am feed)!  He is currently on a formula that we have to mix so that adds to the set-up time.  The pump needs to be primed, dose and rate set, and it runs for just over an hour.  After that we need to flush out the G-tube and clean the feed bag/line.

Jadon gets meds 6 different times a day, for a total of 26 doses.  These all have to be drawn up with various amounts and individually injected into the g-tube or feed-bag.

One thing that is unexpected is that Jadon has needed to be on constant O2 since coming home.  The plan was to use it on and off as needed, but whether it be the increased activity of interacting with his siblings, or the new environment, or something else, he needs it.

The other stressful thing is the suctioning.  Every few hours, we can see Jadon struggle to breathe a little, and hear a bit of gurgling at the back of his throat.  We ask Jadon if he needs suctioning and he will nod his head yes.  If we don't ask him quickly enough, he will get our attention and ask us to suction him!

Finally, every day we get a community nurse come in to run Jadon's IV antifungal med through his picc line.  She is teaching Sara to hep-lock it so that the nurse will be able to stop by to start the med and then Sara will deal with the end.  Within a few more days, she will train Sara to do it all from start to finish so the nurse won't need to come daily.

This all boils down to a pretty full-time job.  Because of the feed and med schedule it is difficult to get a long uninterrupted stretch of sleep.  The kids and grandmaman have been great in playing with and entertaining Jadon - who is absolutely thrilled to be at home.  We are starting to train some of them on some of the medical procedures so that hopefully we can get a bit of a break here or there!

Here is a picture of our living room a.k.a. Jadon's hospital room.  You see one of two concentrators (hi-flo and low-flo), one of 3-different size back-up oxygen tanks (middle size), the feeding bag and pump, suction pump, IV pump and O2 sat monitor.