Another month... another surgery coming up!

Jadon's cardiovascular system is working quite well.  He has been oxygen for almost two weeks and is comfortably maintaining SATs in the mid 90%s and his nurses keep commenting on how clear his lungs sound.  That is great!  We have been able to go on walks with Jadon around the hospital.  Since he is not connected to oxygen, it is easier to make our way around without wheeling the oxygen tank with us.  Jadon is still dependent on IV feeds and so the pole has accompanied us around.

Happy to take a walk around the hospital!

However, he is able to take some food (yogurt-formula combo) and so is able to be off the IV feeds for a few hours a day.  Yesterday Sara was able to walk with Jadon, sans IV pole, all the way to the Eaton Center for a bit.  It felt great to be 'normal' for a few hours.

Jadon still suffers significantly from reflux and there is concern about him aspirating food leading to a lung infection.  He is on several medications for this but none are doing the job.  It has been decided that Jadon will need a fundoplication (they tie part of the upper stomach around the bottom of the esophagus to help close off the hole and decrease the reflux), as well as fixing his hiatial hernia, and giving him a G-tube (feeding tube directly into the stomach).  We will find out more early next week as to exact surgery time.  The medical team figures that this will help him with his feedings and allow him to get enough calories to start putting some meat on his bones, which will further give him strength and help his recovery.

So, back under the knife!  We are thankful that the fundoplication and hiatial hernia repair can be done laparoscopically (through a small incision with a long fiber optic cable system, rather than a large cut).  This should decrease the recovery time for Jadon and hopefully hasten his way home!

Jadon really loves splashing in water and his siblings were happy to join in!

Breathing on his own... but not able to feed!

Jadon is now completely breathing on his own!  As of late Monday, Jadon had all oxygen turned off and his nasal prongs removed.  Since then, he has been able to maintain SATs in the 90s... which is wonderful and absolutely great!  Sara even sent a picture of his SAT monitor showing SATs of 98% sometime overnight on Tuesday.  This is a little guy who had SATs sitting around high 60% when we finally brought him in for his surgery!

With this development, Jadon is also gaining strength.  He will sit in his bed unaided for over an hour at a time.  He has been enjoying his stroller rides out of his bedroom, to the point where he is often unhappy if he is not out and about.  For the last couple of days, he has had to do some of the work himself.  He has been brought a ride-on toy from the physiotherapist and he was thrilled to be able to sit on it and move around.  Now we had to do most of the pushing to get him moving, but his little legs are working, and they will gain strength quickly.

 

The current challenge is his feeding.  Since early last week, Jadon has been retching/gagging whenever food has been placed down his NJ feeding tube.  After some discussion among the medical team, it was decided that Jadon will likely need a feeding tube going in directly through his belly into either his intestine or his stomach.  Sara had to go to training to learn about the function and care of the G (gastric... into the stomach) and GJ (gastro-jejunem... through the stomach into the intestine) tubes.  However, before they proceed, the medical team wants to make sure this will solve Jadon's problems.  Eventually the NJ tube was taken out (nose to intestines) because he was often retching and gagging, and an NG (nose to stomach) tube replaced it.  The hope was he would tolerate his medicines and feeds through this one.  However, after about a day, he was once again gagging and retching.  Today they pulled out all the tubes and have decided to give him a break for a bit.  He has been getting his nutrition through IV (tpn and lipids) over the last several days, and they will continue with this as they determine the best course of action.  His medicines have all been reverted back to IV as opposed to oral, with the exception of his heart medicine!  This one must remain oral, and so he had his first dose today with a little bit of yoghurt.  So far so good, but we are praying he will be able to keep it all down.  Hopefully they can determine his issues with feeding so we can get nutrition into him and hopefully bring him home soon.

Jadon's purple lips are a result of medication for thrush.  We don't care about the colour of his lips given the amazing smile!

Getting stronger day by day

Jadon has had a mixed week last week.  He has had ups and downs with some fevers, coughing episodes, vomiting and more tests, but up until today we have been very encouraged.  As of this past weekend he has gained in strength,  has become more and more interactive and is starting to stay sitting up completely on his own!  I timed him on Tuesday where he stayed sitting on his own in his crib for two minutes, initially using his core and then leaning on his right arm. I know sitting for 2 minutes doesn't sound like much but given where he was only a couple weeks ago, we are thrilled!  We also took advantage of the nice weather and Jadon has gone outside for a few walks around the hospital.

The challenge now is Jadon's feeding.   He is currently getting all of his nutrition through the NJ tube.  The plan is to get him eating again.   He had a feeding test on Tuesday. He tolerated thick puree and thin puree.   Aspirated a little on thick liquid and a lot on thin liquid.  Jadon coughed when he aspirated which is a good sign.  The plan was to start yogurt for a couple days then introduce other foods.   Jadon had a little yogurt Tuesday supper time by ended up vomiting it out overnight.  Since then he has been wretching and vomiting quite frequently and his fevers have been persistent.  The medical team are deciding how to proceed with Jadon's nutrition so anything orally is currently on hold.
So there are still issues to sort out but there has been some notable progress.

Easter Visit

Due to my being sick over the last week we had not been able to go see Jadon as a family for a while.  The kids were very excited yesterday afternoon as we headed down to the hospital after our Easter Sunday program.  I was a bit apprehensive because Jadon had not really been doing well when I last saw him Saturday afternoon.

We arrived at the hospital and all had lunch together as Jadon was sleeping.   We then took turns to go in to see him.  He was more alert than we had seen him.   He was shaking his rattle and playing tug of war with a ball andnodding his head yes when asked if he wanted more bubbles.   We were thrilled to see Jadon's little personality come out even more.

Our wonderful nurse took a family picture for us!  Heartwarming day. Rykauna  and Logan even each had an opportunity to hold Jadon for a few minutes.

Jadon 's oxygen settings are still on quite high, so there is still a long ways to go.  We are hoping they can start weaning him down today.  We are hard back to the hospital for another visit this afternoon.

The Roller-Coast continues!

Jadon had finally had his breathing tube removed late on Wednesday evening and was placed on high flow oxygen. On Thursday he had an eventful day as it was time to deal with the non-functional NJ (nasojujunem) feeding tube (tube down the nose, through the stomach and into the intestine).  Jadon was brought down for the fluoroscopy guided procedure and after several attempts at placing it in the right place, the radiologist gave up and said it would need to be done in another radiology area of the hospital on Monday. So, the ICU team decided to try feeding him via the NG (stomach) tube. This creates a risk for aspiration but since he is so much stronger the team decided to try it again. So far it seems to be going well.  He remained under the care of the Cardiac Critical Care Unit staff at until early Friday afternoon, then was transferred over to the cardiac step down unit once again.

Jadon has shown some signs of progress.  On Thursday he spoke the word, "more" when the nurse gave him some yummy mouth moisturizer.  He was tossing a ball and rattle a little bit over the last couple days, and would grin and almost chuckle when they fell.  He is also a bit feistier...which is great, as he has been almost overly complacent for awhile.

Despite some definite progress, we were reminded again today of Jadon's precarious health.  I went down to the hospital Friday afternoon to spend some quality time with Sara and Jadon as I have not been able to go down over the last week since I was fighting bronchitis.  I was amazed to see Jadon's oxygen weaned to 2L nasal prongs!  He was doing quite well, though he had a slight fever.  He fell asleep early in the evening, and so Sara and I headed out, with the promise from the nurse to call us if anything of significance occurred.  We came back this morning to find Jadon on 15L high flo, 60% oxygen with SATs around 92%!  Significant regression in his oxygenation levels!  We were shocked and disappointed.  His fluid level was back up a bit again, he hadn't had physio for a couple of days, and his lungs sounded crackly!  He got physio which helped him somewhat and as the day progressed his SAT levels slowly climbed up, but he is still on the high flo.

When he does well, we want to be cautiously optimistic, but it's tough if the next day, like today, brings another set-back.  Comparing day to day makes for a bumpy ride.  We have to look at the general trend over weeks, and over that time span, he has progressed.