Thursday, 30 July 2015

Medical update number.. who knows what?

Once again this week has given us mixed reviews.  The last two dressing changes on his sternum have been very encouraging.  The top wound has basically completely healed, just slightly scabbed now.  The bottom wound, up until Saturday had progressed very little.  In fact, upon changing the dressing the CV surgeon decided to consult plastic surgery and discuss a muscle graft into the wound to help speed up the closing/healing of it.  During Monday and Wednesday's dressing changes, the hole is much smaller and less deep and it look like it will close up on its own in the not too distant future!

As far as eating goes, we are also making great progress.  Jadon has shown a strong appetite and interest in food.  He is still on IV nutrition as his primary means but is managing to eat enough that they have started weaning that down.  The medical team feels that this improvement is likely due to some increase in heart function as a result of the bypass done in early June.  We are praying (an welcome all others to join) particularly that he can get to the point of taking enough nutrition orally that he will not need a G-tube as was originally planned.
Jadon playing with water during a physiotherapy session up on the Starlight Lounge patio.
In typical Jadon fashion though, he has the doctors flumoxed on other fronts.  His kidney function numbers and electrolytes have been off and not following a predictable pattern.  As a result nephrology (kidney specialty) was consulted again and they also asked for a endocrinology (hormone specialty) consult.  The endocrine team is not sure what is going on but think he might have a rare complication due to his severe sternal wound and bone infection causing excess production of a form of vitamin D which in turn encourages calcium to be pulled from his bones increasing his calcium levels.  They will track this closely and if the levels do not drop they will give a drug used in osteoporosis patients.  This morning the calcium was trending in the right direction which is encouraging.  Jadon also had a kidney ultrasound and specialized urine tests which actually indicated an increase in function, which is once again encouraging.

One of our current biggest challenges is Jadon's sleep... or lack thereof.  He has typically been getting about 6 hours of sleep spread out throughout the night with waking periods ranging from 15 minutes to 2 hours.  He is not getting as much sleep as he should, and so neither are mom and dad!  We are all trying a variety of tricks but nothing has worked yet to get him to sleep more than 2 hours in a stretch.
Jadon sleeping on his stomach for the first time in 7 weeks.  He no longer has to wear his corset.  Didn't help with the sleep length of quality though :-(
So as progress is made on some fronts, the pathway is still not completely clear.  We go through a variety of emotions as issues arise, questions are posed, answers are found.  As one of the nurses once again reiterated, "With Jadon we are not following a textbook... he is writing his own!"

Monday, 20 July 2015

Moving on up!

Today was a big day as Jadon was discharged from the CCCU (cardiac critical care unit), where we have been for the last six and a half weeks post surgery, to the cardiology floor on 4D.  To some degree it feels like a bit of a homecoming as we had been on 4D for over two months before this most recent surgery.  Many of the nurses, nurse practitioners, doctors and other staff from both floors were excited to see Jadon make the transition.

While we are also excited about this next step, we also realize that there are many more questions that still need to be answered.  Jadon's chest wound - the top is healing well but the bottom still has a hole through to the mediastinal cavity.  Will it heal on its own or need intervention?  Jadon is just starting to drink a little applesauce.  How will his feeding go?  Has his reflux improved at all?  How will he get his nutrition?  Will he still need the G-tube, and if yes, how soon can he get it?  How much has his heart function improved with the CABG (cardiac arterial by-pass graft)?  Will they have to do any other interventions for this?  How soon can he get off the rest of his sedatives, and pain medication?

So many questions.  Some of these questions will have answers in days, perhaps weeks.  For others we will have to wait for months.  But today, we are rejoicing!  We are Praising the Lord!  One step in the right direction!
So cozy in mommy's arms!
Smirking as we get ready to throw coins into the fountain on our walk!
Sleeping so peacefully.  Love this kid!

Wednesday, 15 July 2015

Back Roaming the Halls

Jadon has continued to progress very well since the last setback 1 1/2 weeks ago.  He is now off all of his blood pressure medications and off the main sedative he has been on.  They have switched his pain medication to something that can eventually be taken orally and so he could get out of the CCCU.  The last two swabs of his sternal wound have come back negative for the fungal culture.  Maybe the infection is gone and we can focus completely on the healing!

Along with this, Jadon has made strides in other ways.  He has taken small amounts of an apple sauce/juice combo orally... the first food he's taken in about 4 weeks!  This is important as he doesn't tolerate feedings through his NG tube very well and so is currently dependent on IV feedings.  He has also been going for walks in his special stroller, accompanied by his IV pole!  Today he took two walks outside and enjoyed the feeling of sun on his face for the first time in 6 weeks!
So great to see his smile again!
Jadon's nurse today is an avid flower lover... and 'picked' a few for Jadon on our walk this morning!
Afternoon walk with family - aunt and some cousins from out East

Friday, 10 July 2015

Crazy Crazy Rollercoaster Ride!

Who knew that the last paragraph of the previous blog entry would turn out to be so prophetic?

Last week the focus of Jadon's care was to wean him off his blood pressure medication (singular) and wean off his sedation.  Once these were accomplished he could be transferred up to the cardiac floor to continue his recuperating.  He was making good progress on these fronts.  So well in fact that they had started him on very small amounts of feeding through his NG tube.  On Saturday Jadon was able to go on a walk (stroller ride) around the hospital. This was a high point on the roller coaster.

Sunday morning when I came into his room I saw a very different child!  His blood pressure was very low and his heart rate was very high and his chest wound was leaking once again.  It was as if a switched had been flicked.  Jadon went into full body sepsis.  They started him on a couple antibiotics and started him back on blood pressure meds.  By Monday morning he was on 3 different blood pressure meds (plural) and in full renal failure.  They intubated him and brought him to IGT to insert a VAS (vascular access) catheter to prepare him for CRRT (continuous dialysis).  A definite low point on the roller coaster.

At this point we were very concerned.  While waiting for the VAS catheter insertion Jadon started producing some tiny amount of urine.  We prayed urgently and many friends joined in.  When he returned from the insertion it was too close to shift change to hook him up to the dialysis so they decided to wait.  Jadon gradually started producing more and more urine to the point that they delayed the hook up and eventually decided that the dialysis was not required!  What an answer to prayer!

Since then Jadon got a CT to look for a pocket of infection in his chest.  He doesn't have one.  They are daily checking out and repacking the openings in his chest wound.  He has been completely weaned off of the blood pressure meds and they are once again working on weaning his sedation. Today he is almost back to how he was like a week ago Saturday.  Back climbing up the hill on the roller coaster.

We are once again cautiously optimistic.
Family portrait on the white board in Jadon's room, compliments of Jie Jie Rykauna
Jadon wearing his 'corset' to help the chest stay more stabilized as it heals.
He no longer has the IV and arm 'pillow' on his left arm.

Thursday, 2 July 2015

Through another valley... But hopefully out the other side now!

Jadon has had an interesting week, which we have now come to expect from him. We have had continued issues with his sternal infection.

After the irrigation of the wound was ended, the surgeon recommended a corset for Jadon.  This is a vest that is made by one of the CCCU nurses here at Sick Kids.  The purpose is to help hold the chest and sternum in place to decrease the chance that Jadon's incision dehisces (opens up) again.  Of course on Saturday we noticed that the bottom bandage of Jadon's was soaked through with fluid/pus from a gap in his wound.  The top edge of the wound was also leaking.  We had several visits from the CVS team and spent several days concerned about the increased infection risks.  The concern was that the bottom hole went right into the lung cavity and would affect Jadon's ability to breathe on his own off the ventilator.  It was decided yesterday that the communication was likely to the mediastinum (space between the heart and lung) and so Jadon could be extubated and the surgeon decided the wound should heal on its own.  Late yesterday afternoon Jadon was extubated and put on hiflo oxygen.  He did so well that this morning they switched him to regular nasal prongs and he is still doing well with great oxygen sats.  They are still weaning his sedation and that will keep us in the CCCU for a while yet; however, we seem to have climbed out of the valley of the chest infection.  They are hoping to start very minimal feeds through an NG tube and see how things go.

We are very happy with this little bit of progress though we are reservedly so.  There have been so many unexpected setbacks after good news in the past that we are shielding ourselves from getting too excited too quickly.  Here's to hoping and praying that Jadon will keep trending upward.