Thursday, 16 April 2015

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.

Monday, 6 April 2015

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.

Saturday, 4 April 2015

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.

Tuesday, 31 March 2015

Out of the OR back to Critical Care

Jadon had his sternal surgery this afternoon. The sternum was opened up again, cleaned out, flushed with antibiotics, and infected tissue was removed.  The bone was in relatively good shape so the surgeon was happy with that. An attempt was made to access a fluid collection on the right lung but it proved illusive as always. His sternum was rewired and a different type of stich was used to close the skin so only a small part can be reopened if necessary. He is back in the cardiac critical care unit for at least overnight with the hope of taking him off the ventilator in the morning. He has been dropping his oxygen levels a bit tonight but finally seems to have stabilized. 

Praying he continues to improve and not have any further setbacks.  I am still fighting bronchitis so I was not able to be present at the hospital.  Obviously this was tough on both Sara and I. We've got to admit... this is getting long.  But our faith is in God.  We know that he is in control.

The Lord gives strength to his people; the Lord blesses his people with peace.  Psalm 29:11

Monday, 30 March 2015

Back to the OR tomorrow :-(

Jadon has been doing better, been more alert, and more interactive over the last few days.  He has played with syringes, toys and has even blown a kiss on a few occasions.  His sedation has been continuously weaned and as he is now on a very small dose, his real personality is coming out more, which we are thrilled with.
Jadon playing with a syringe
The suction bandage on Jadon's wound has been doing a good job getting the pus out.  However, the infection has caused some issues and the sternum is destabilized.  This means that the problem in healing is not only the flesh wound, but the bone underneath.  It is very uncommon (but we have learned that Jadon very much is the uncommon one!) but occasionally necessary to go back and open the chest up again to clear an infection/wound and rewire the sternum closed.  Jadon will be going back to get that done tomorrow afternoon.  While they are there, the doctors might place another chest tube to help with the fluid drainage.

It is discouraging.  Obviously this will delay his full recovery as far as his chest wound is concerned.  However, we are hoping that this was the source of infection all along and that without his body having to fight that off, he will be able to heal faster and gain his strength back more quickly.

Meanwhile, Jadon's NJ tube accidentally came out yesterday. The team decided to try feeding him via the NG tube. Unfortunately he started aspirating a bit so they decided to put in the NJ tube again under fluoroscopy guidance. It went in really easily and Jadon was quickly back to his room. Although the radiologist had tested the tube before we left the GI suite, it was not functioning a few minutes later when the nurse tried to hook up feeds to it. The assumption is that it is kinked, but since he is going to the OR tomorrow anyway, they decided to not worry about it for now and start him on IV nutrition overnight and up until his surgery.

Friday, 27 March 2015

Let's vacuum this wound clean!

Jadon's fevers worsened and he was looking more lethargic clinically.  Late yesterday afternoon, after being suctioned, a bubble of pus came up out of his chest wound.  The nurse and nurse practitioner were concerned and they called the cardio-vascular surgeons who came and had a look.  They were concerned about a pus-filled abscess and so ordered another chest CT to see what exactly the issue was.  After the chest CT this morning, it was determined that Jadon did have a pocket of pus but that it was likely above the sternum, not below.  They have decided to continue with the antibiotics.  They also cleaned out the wound and put Jadon on a suction bandage:
literally a sponge taped over the wound, attached to a tube which leads to a 'vacuum'.  This applies constant low-level suction to the wound to try and make sure that all of the pus gets cleaned out.  He will likely be on this for several days.

Other than that, Jadon's sedation is continuously being weaned, and his breathing is doing well.  The radiologists and cardiac surgeons commented that the chest CT showed that the heart and the lungs were both looking better than they had in the previous CT, which is good news.  Ultimately it seems that Jadon's two biggest problems: heart and lungs, are doing relatively well.  The challenge now is to get him healthy enough, and eating and drinking enough to get him home!
Jadon a few days ago, looking great in a shirt!  This is before the chest wound opened up.

On another note, Logan is doing much better.  The shingle pain is basically gone now, though he still has significant itchiness on the one hand.

The months of February and March sure have flown by.  I wonder why? :-)

Wednesday, 25 March 2015

Moving Day :-)

After 43 days,  Jadon is finally out of the Cardiac Critical Care!  We have met very many wonderful people who have been dedicated in their care of Jadon for one and a half months.  He is a sweet little boy and even heavily sedated he seems to have wormed his way  into the hearts of many of his caregivers.

This afternoon he was moved up to the step down room on the cardiac floor.   This is a transition room between the critical care and a regular ward room.

But of course, things with Jadon are never straightforward.   Yesterday and today he had some fevers.   His white blood cell count was up.   Signs of an infection again!   The sternal incision on his chest split open again and there is an infection there.  Two types of antibiotics have been started and hopefully this will take care of all that.

They are now working with Jadon to strengthen him and to get him eating and drinking.  He is slowly becoming more alert with some signs of our little guy with the big personality that we all love and miss so much!