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!

Sunday, 22 March 2015

Finally off the ventilator!

Since the surgery on Jadon's diaphragm, the settings on the ventilator have been continuously lowered.  As Jadon has been able to maintain appropriate oxygen saturation levels and breathing rates, the decision was made to extubate him this afternoon.  Around 2:00pm, the tube was pulled and Jadon was ventilator free!  He currently is receiving some oxygen nasally (about 45%) on something they call 'high-flo' but he has been doing well.  He is somewhat congested and needs to be suctioned frequently but his SAT levels are being maintained at a beautiful 95%+.

The next goals will be to get Jadon's fluid levels balanced, his sedation medications continuing to be weaned, his feeding regulated and being able to swallow.  Once these are accomplished, he will be able to move out of the Critical Care Unit.  Given his reflux issues and balance issues this might still take a little while, but we are very happy for the positive steps forward.  We are praying that he does not relapse overnight and that he is able to continue progressing towards complete health!

On the home front, Logan has had a couple of pretty miserable days.  He has had a hard time falling asleep due to discomfort and has been sleeping in the lazy boy in the living room so he can prop his arm up, a position he feels more bearable.  He is feeling a bit better this afternoon so we are hoping sleep will be easier also tonight.

Saturday, 21 March 2015

Steps in the right direction

Jadon's left diaphragm was plicated on Thursday, late afternoon.  His chest x-ray immediately showed a much larger and fuller left lung, as there is more place for that lung to inflate.  His right lung however was still mostly a white-out (not much sign of air entry).

Over night on Thursday and early Friday, Jadon started retaining more water again.  He was noticeably more swollen on Friday morning and his belly was very inflated.  The aim is to get Jadon off the ventilator as soon as possible.  To do that, his lung inflation needs to be at optimum.  The fluid in the abdominal cavity hinders proper lung inflation.  Over the day Friday and today, the doctors have been aggressive in Jadon's diuresis (reducing fluids).  He has lost much volume (to the point he looks overly thin) but his lung inflation is much better.  His chest x-ray this morning showed a decent amount of air entry into his right lung - likely the best x-ray he's had in weeks!  They are continuously decreasing the ventilator settings as much as Jadon can tolerate.  The goal is to extubate him tomorrow.  We are very excited and are hopeful that all will go well and that Jadon will successfully tolerate the extubation.

Just in case we weren't busy enough... we have something brewing on the home front.  Logan had been commenting occaisionally about a sore right arm that seemed a little bit swollen for several days.  It became quite tender on Thursday and Friday he woke up with a large splotchy rash on his right arm and hand.  That's right... shingles!  So he has been in a lot of pain and discomfort over the last few days.  The doctor said it should hopefully clear up within about a week and we are praying it does!
Logan commented "During Christmas Holidays, I got hand, foot and mouth disease - that's an illness babies and little kids get.  Now over March Break I get shingles - that's an illness older people get!"

Thursday, 19 March 2015

Diaphragm has been plicated

Jadon had his plication surgery today.  It was touch and go as to whether they would actually go through with it as his right lung was not in as good a shape as they had hoped.  They decided that this was likely as healthy as they would get Jadon, with his fevers and white blood cell count down, and so they decided to go ahead.

The surgery was fairly quick, only about 2 hours total (much shorter than the 11 1/2 hours required for his first surgery!) and went by with no complications.  Jadon has two chest tubes, one on his left near the incision site to drain any fluid caused by the surgery, and one on his right side to help drain any of the fluid build up he had had in the area near his lungs.

Jadon is currently sleeping soundly (or at least was when we headed off to bed).  He is still fairly heavily sedated as he is recovering from the surgery but is being ventilated nicely and he seems comfortable.  The plan moving forward is to try to wean him off the ventilator and eventually extubate him as quickly as possible.  The doctors have some ideas and goals but ultimately Jadon will decide when that happens.

Thanks for all the prayers and support.  We praise God for a good day and continue to pray for a good night and continued recovery.

Finally - Operation Day is here!

That is right.  You read it correctly.  Today the doctors have scheduled Jadon to have his plication surgery.  He is tentatively scheduled to go in to the operating room around 3.  The surgery is apparently quite straight forward and he should be in and out in less than 2 hours total.  However, we are still somewhat nervous as Jadon has often had complications from many of the procedures over the last month.

This past week has been a real roller-coaster.  Thursday and Friday were pretty good days.  The weekend was not.  Friday overnight Jadon had several dirty diapers in a row and so he was put back in isolation.  On Saturday, Jadon had a significant desaturation episode.  As a result, he had to go up on his ventilator settings and his sedation.  His right lung was not working much and he also had significant swelling in his abdomen and chest.  Over the next couple of days he got ultrasound of abdomen and chest, an echo (ultrasound of the heart) and two bronchoscopies (go into his lungs with a camera/suction combination).  The second bronchoscopy yesterday was intended to try and 'recruit' the right lung better.  They also started him on some new medication to help clear up his right lung.  The good news is that some of these procedures have helped.  His fever is now either gone or low grade.  His right lung has cleared up somewhat.  The doctors feel that this is a good window to do his plication and so we are scheduled for this afternoon.

The surgery involves pulling down Jadon's paralyzed left diaphragm and sewing it there.  This will allow more room for his left lung to open, meaning he will be able to get more air into the lung.  This in turn will allow for better oxygenation of his blood, and therefore hopefully allow him to get off of the ventilator and breathing completely on his own.

Please continue to pray for Jadon and for help for the surgeons and doctors.  As you know Jadon's right lung is small and so he really needs the left lung to be able to function also.  That is the aim of this surgery.

Thursday, 12 March 2015

A plan and some baby steps

The doctors met on Monday to discuss Jadon and the decision has been made to plicate his diaphragm.   Given where he is at he is not handling lower settings on the ventilator and therefore is really not able to be extubated.  He is still fighting fevers and his right lung doesn't look great on X-ray.   Once those two things are cleared up he will head back into surgery.   They are continuing his antibiotic regimen and have also started him on antifungal medication.  His fevers seem a bit less intense do hopefully things are starting to work.

Meanwhile he had generally been more awake and somewhat responsive. On Monday evening Sara and I even got a few smirks out of him while playing with his bravery beads with him.   His eyes also lit up and he had a little smile when we played a Jesus Loves Me video on YouTube.   It has long been one of his favorites. 
Here is one of the smiles we got from Jadon on Monday.  Warms our heart!

Tonight I brought all the kids down to Sick Kids as I have the last 3 Thursdays (as well as Fridays and usually sometime over the weekend).  We are able to have supper together as a family (or at least the kids can eat with Sara since  if Jadon is awake, I stay with him.  Afterwards the kids take turns with either Sara or I to come down and visit with Jadon while the other kids, for the most part, hang-out in Marnie's lounge.  It is a great place with a pool table, air hockey table, table-top hockey, pinball machine and different gaming consoles and movies, as well as amazing child-life specialists and volunteers who play games and do crafts with the kids.  It really helps to make our many visits to the hospital positive for the rest of the family.

First Bravery Bead Necklace

Tonight, Logan was able to get a few smirks from Jadon while playing with him.  Rykauna has been very faithful in collecting Jadon's bravery beads.  This is a program from Sick Kids in which children get different beads for being 'brave' during different procedures/tests/surgeries/follow-ups etc...  They are then encouraged (or in Jadon's case, his siblings have been) to thread them into a necklace.  This way, there is a representation of the child's 'story' of their hospital visit.  Jadon is working on necklace number 3 already.  Each bead represents some level of medical work done on him.  He will have quite the story.

Sunday, 8 March 2015

Questions, Questions and more Questions

It has been almost two weeks since the last update.  A lot has happened, though unfortunately Jadon is really non the better than he was as of last update.  He has still had continuous fevers since his operation.  Despite many attempts at finding a source of infection, the doctors, including specialists in Infectious Diseases have come up empty.  He is still on the ventilator, with settings going up and down a bit, depending on how his lungs are coping and his breathing is going.

Last update, the plan was to plicate Jadon's left diaphragm (tie it down so the lung could inflate better).  A few days later, we were told that likely the better course was to let Jadon rest for several more weeks in the hope that the phrenic nerve (which controls the diaphragm) would spontaneously heal (which does occur with some level of frequency).  To this end, the plan was to wean Jadon off the ventilator onto CPAP or BIPAP (using a mask to blow are into his lungs).  Jadon had aspirated his feeds while previously on this setting, so the decision was made to remove his NG tube (through nose into the stomach for feeds) and replace it with an NJ tube (through nose and into the small intestine).  At the same time, they wanted to remove the blood line into his neck and replace it with a PIC line - an IV line fed from his arm and directly to the spot above his heart.  This is a more permanent IV that allows for rapid spread of medicine throughout the body.  So last Monday, Jadon went into IGT for these two procedures.  We were told it would take between 30 minutes to about 3 hours.  We were not surprised when Jadon's procedures took nearly the full 3 hours.  They had challenges with both procedures and while they were ultimately both successful, both of the tube's path and placement are different than the ordinary.

Later Monday evening and into Tuesday, the incision site on Jadon's chest started to seep and ultimately, was shown to be infected.  More antibiotics were ordered to try and keep this infection at bay.  To see how badly the area was infected, on Friday Jadon underwent a chest CT.  It turns out that the infection is mostly superficial and has been clearing up with the antibiotics and dressing changes.  During this time, Jadon's ventilator settings have been slowly creeping up, meaning that the opprtunity to wean him toward the BIPAP was becoming less likely.  With this in mind, we were once again told that plication of the diaphragm may be the best option.  However, with his chest infection and continued fevers, that decision would be delayed.

In the meantime, due to his heavy doses of antibiotics, Jadon tested positive for a gastro bug which led to him being moved to an isolation room.  While it is a pain in many ways and we must be gowned and gloved when we interact with him, it has proven to be much quieter and Jadon is sleeping much better in his new room.  However, still no answer as to where the fevers are coming from.

Tomorrow is a big day.  Jadon will be discussed in pre-op meetings with a group of likely 30+ doctors.  They will discuss the pros and cons of plicating him and come up with a more concrete care plan.  We pray for wisdom for the doctors and all those involved in his care and we hope that tomorrow will be the beginning of an upward path of healing for little Jadon.