Saturday, 10 January 2015

"If I were you, I would keep him in a bubble..."

It has been a while since I wrote an update on little J so I thought I should spend a few minutes and type a  blog post.  The title of the post is a quote from his pediatrician when I asked him if I could take him out and enjoy social engagements with our friends.  So we are basically keeping him away from people as much as possible.  Steph and I love visitors, love getting together with friends and love to do things outside of the house with the kids.  This has been a bit of an adjustment for us but we know there is likely an end in sight so we are doing what we have to do to try and keep Jadon healthy.

Keeping Jadon healthy in no easy task.  He has been admitted four times so far. Twice in Vietnam and twice here.  We have only had him for around 2.5months so if you do the math he has been sick a lot of the time.  This past week he was admitted for four nights due to a cold.  Yup, you read correctly.  Not a flu, the common cold.  It stressed his system out causing his oxygen saturation levels to drop. He was on oxygen and basically we had to wait for the cold to run its course.

On Monday his case was presented at the weekly cardiac surgical conference.  In the late afternoon the cardiologist came to our hospital room to discuss what was determined at the meeting.  They are quite concerned about his right lung being very small.  Since his heart is in the right side of the chest instead of the left it appears his right lung may have not had the space to grow correctly.  There is also some question about whether he has some areas of lung that are not functioning due to improper venous drainage.  According to the  cardiologist, his heart is stable.  His heart is not the biggest's his lungs

He then told me the surgical team wants to do a CT scan of his chest to visualize him pulmonary vasculature to they know what they are dealing with when they open him up.  I told them he had one done in Vietnam and showed him the results on a page written in Vietnamese.  He said to ask the nurse to photocopy it and said he hoped this would be sufficient for the team.  I expressed my concern about not wanting a second CT scan unless it was absolutely necessary seeing as CTs are so radiation heavy.  After such negative news, I thought I would lighten the mood with a question about the surgical wait time.  I figured that this last admission would strengthen the case for an earlier surgery.  Nope.

 "Six months."

I am sure my face must have fallen at this point because he then said, "I will tell the team that you would prefer it earlier."

After he left, I shed a couple of tears as I processed the fact that his health may not improve as much as I hoped post-surgery.  He may struggle to breathe every time he gets a cold.  He may always be sickly.  This is something I know with God's grace, we can handle, but it is disappointing nevertheless.

Tuesday during medical rounds the team came to our room and were discussing Jadon still being on oxygen.  The attending physician suggested maybe we needed to drop our oxygen saturation goals to get him off O2.  Since we were only targeting an oxygen saturation of 70% dropping our target to 65% as suggested seemed crazy to me.  He gets  short of breath when his sats hit about 72%.  Realizing the doctor just wanted to discharge him, I said, "He gets symptomatic at sats that low.  I am, however, willing to take him home on oxygen.  We have only had Jadon for 2.5 months and he has had four admissions. I  am a respiratory therapist and would be comfortable managing him at home when he has a cold and all he needs is a little oxygen."

The doctor jumped at that and turned to the charge nurse, "How long does it take to arrange this?"


"Good", she said turning back to me," you want out of here, and we want you out, so we will get you discharged tomorrow with home oxygen to use when needed."

This was a relief.  I don't want him struggling to breathe, and I don't want him hospitalized every time he has a cold.  Hopefully this occasional oxygen use should help lessen his admissions.  Obviously, the amount of oxygen they are allowing me to administer is not high.  If he gets too sick he will be admitted.

Later in the morning on Tuesday, the occupational therapist came to visit me and as per our discussion on Monday, tried Jadon on a number of foods to see if he was truly coughing and choking on solid foods or just gagging.  She tried a  number of foods including cheesies, biscuits, cooked baby carrots, and small chunks of fruit.  His drinking on bottles, sippy cups and straws was also assessed.  She gave me techniques to encourage his eating and tolerating of these types of foods.  Since he coughed a few times and sounded "chesty" after the procedure she suggested we should do a swallow study to definitively confirm whether of not he was micro-aspirating or not. 

She left the room and returned a bit breathless from running back and forth to the radiology department.  She had managed to talk the radiologist into doing a test after the normal scheduling times!  I was so very thankful.  She arranged for a porter to assist me down to the department and met me down there.  The poor porter should have been off on disability.  She was wearing the whole isolation regalia of gown, glove, mask with face shield as she carried... Jadon's chart.

I had Jadon slung on one hip, the diaper bag on the other arm was pushing the oxygen tank along in front of me.  The dear porter could barely walk.  She was holding the handrail along the wall and moving so slowly I had to stop walking a few times in order to not walk into her. I am guessing she needs either a hip or knee replacement or both by the way she was hobbling around.  People we crossed in the hall were definitely staring as they saw my heavily gowned, wounded porter leading me along the hallways.  I felt bad for this woman.  I am not sure why she is still working... there's got to be some way she could have a paid leave of absence.

The swallow study was interesting and informative.  Jadon swallowed his food well with no traces of anything going into his lungs.  The coughing and occasional spluttering are being caused by a bit of food still lining the wall of his throat after he swallows.  The solution to this problem:  teach him to take an extra swallow after he eats.  I am still working on figuring out how to do this, since giving liquids is apparently not a good option;  this will just get left along the wall too.  Once I was back upstairs, sans porter (I couldn't make her walk any further) the OT came to chat again.  She told me Jadon can slowly try eating anything.  He was just gagging a lot as he missed the appropriate age to have foods introduced.  If foods are not introduced at a year, then the gag reflex starts to move forward along the tongue and it can become overly sensitive.  Who knew? Using his tongue and teeth may help him with making his sounds as well.

So we have started giving him solid foods and he is loving it!  He is doing really well, is not gagging too often, and is really proud of himself.  We of course are proud of him too!  This makes feeding him so much more enjoyable and so much simpler.

I had a visit from the surgical coordinator shortly before I left on Wednesday.  She told me the team wanted a CD of the chest CT done in Vietnam.  If I could get a hold of that and the pictures were satisfactory to them, then we could avoid do a repeat CT.  She told me to call her as soon as Jadon's cold symptoms are completely gone and they will book him a surgery date.  She was much more comforting than the cardiologist had been.  It appears she thinks she can get me in sometime in the next few months.  We will see. :)

He was discharged Wednesday afternoon.  My friends picked me up and we stopped at Medigas to pick up a couple of tanks in the event he needed oxygen that night.  He had been weaned off the O2 during the night Tuesday and throughout the day Wednesday but the team wanted us to have some with us.  It was a bitterly cold day.  Jadon did not respond well to it.  We left the vehicle and I ran the 12 feet to the door of the building.  Upon entering the business, Jadon was breathing really heavily and his lips were blue.  It seemed the frigid air really stressed his system.  My friend who is a cardiac nurse noticed as well. 

Upon arrival home he got super excited when we drove in the driveway.  We quickly ran him inside then I checked his sats...57%  I started getting the equipment together to give him O2 but he quickly improved in the warm environment of our home.  He was saturating in the low to mid 70s when he was settled.  The tough thing was he just wanted to walk around and play with the kids and his toys.  It was sort of sad watching him try to walk.  He was stumbling frequently and becoming short of breath very easily.   It was amazing how not walking for nearly a week had completely deconditioned and weakened him.

Once Jadon was settled in for the night I messaged my agent in Vietnam about getting a copy of the chest CT on CD.  She made a few phone calls and then told me she had Fed-Exed it to me!  Yay!  Loan is so helpful!  This gesture saves Jadon a ton of radiation and may also speed up his surgery as we won't need to wait for a CT timeslot.  Of course, this all hinges on the pictures being clear enough for the doctors to visualize the vessels they are concerned about.  Praying they are acceptable!

Since there is cost involved in doing a rush  FEDEX shipment I needed to find an easy way to pay her.  One of the families leaving today for Vietnam, agreed to allow me to email them the money so they can pay Loan when they see her.  I have never physically met this woman, and she has never met me.  It is amazing how supportive adoption communities are.  They just help one another without thinking about it.  I am truly appreciative to KS for helping us out in this way.  She only had a couple of days before she left when I asked her, and could have very understandably said, "I would love to but I am much too busy". Instead, she went out of her way for us.  Have a safe flight, K!

Today, is Saturday and Jadon has been home since Wednesday night.  He has changed in leaps and bounds since last Saturday, the day we took him to hospital.

Here are some of his big milestones since last week:
1. He can drink from a cup
2. He can eat solids...aka regular food
3. He has slept through the night most nights...phewf! (finally!)
4. He is starting to talk!!  --Wednesday night he said, "Nigh nigh, Neff. (meaning "Night, night Steph. )  I guess he hears me calling Steph by his name so that is what he has been using instead of "daddy" lol!
Today he said  a few more words.  We are sooo thrilled with all this progress!

I can't stop thinking of the verse that has been impressed upon me so many times in the past couple of months, "Unto Him who is able to do immeasurably more than we can ask or imagine."  On many occasions since we have adopted Jadon, God has done just that.  We are truly thankful!

Thursday, 11 December 2014

Medical Update: Jadon

During the past week, Jadon has had more than his fair share of doctor visits.  Last Thursday I took him to the pediatrician because he had a five day history of cold and flu symptoms.  Some of his other siblings were experiencing the same symptoms so we knew he had picked up a flu virus. He had been choking on his mucus throughout the night so we were sleeping with one eye open and giving him steamy bathroom humidity treatments, running a cool humidifier in the room and spraying nasal mist up his nose to try to loosen the sludge.  The doc gave him an antibiotic and an oral prednisone prescription assuming he now had a pneumonia.

Unfortunately, Thursday night was not much better.  In fact, his secretions were not really an issue but he kept dropping his body temperature and having cold sweats.  His forehead was constantly coated with a bead of cold water and no matter how much we attempted to warm him his temp was very low.  I knew this was not a good thing so in the morning my mother-in-law joined me in the trek down to the Hospital for Sick Children.  As I expected, after triage, we were quickly whisked into a room and Jadon was put on a monitor.  His oxygen saturation dropped to 63% so the nurse put him on a little flow-by oxygen.  He was listless and lethargic much of the time.

Very shortly after our ER arrival a doctor arrived to assess him.  He had a chest x-ray, blood work, ECGs, ventolin treatments, and multiple doctor visits.  He was taken on and off oxygen but in the end the ER staff wanted it left on.  His saturations were dropping frequently to the high 60s and once into the low 50s.  At first the physicians thought he had a respiratory infection but they then decided that, yes, he had a flu, but it was his heart that was causing the low oxygen.  He was having TET spells due to the flu stressing his heart.  This is something that is not uncommon to babies with unrepaired Tetrology of Fallot.  He was admitted to the cardiac floor for observation then discharged in the morning after his oxygen levels and energy level normal returned to near normal.  Although I wasn't thrilled about having to be at Sick kids in the first place, there was an upside to it all.  The ER docs arranged for a cardiology work up Wed. Dec 10th (yesterday).  I had already had an appt booked with a local pediatric cardiologist, but the team felt if he were already linked up with Sick kids, things might move along quicker. They were also keen on having all of his tests on file in the event of a subsequent ER visit.

Tuesday we headed to our regular pediatrician for a weigh in, and check-up as well as a vaccination program start.  Unfortunately Dr. B. did not feel Jadon was well enough to start his vaccinations. (He has no vaccinations as the orphanage doctor said he wasn't well enough to get them) His weight was back to nearly where we started :(.  But, he was better clinically than the week before.  Likely his weight dropped due to his illness.  Dr. B was able to access the results of all the bloodwork and swabs and he told me Jadon tested positive for RSV.  This is a respiratory virus that is particularly tough on kids under 2 years of age.  It sends many babies into hospital every year.  I was almost relieved he had it because it was the one respiratory condition I was afraid of him getting.  I did not think he would fight it well at all.  So far he is doing not too badly.  I had figured on a week in hospital if he got RSV.   Hopefully he will get fully over it soon.

Now, that brings us to yesterday...Wednesday.  The morning started out with 45 min cardiac ECHO. (ultrasound of the heart and its surrounding structures)  Jadon was a trooper.  Since he will not lay on a stretcher without me, I laid on it with him laying on top of me.  He lay so still during the test that he actually fell asleep.  That's right. No sedation.  Just a lot of friends and family praying :)  After that was completed we headed for an ECG.  Immediately after that, we were called in for a oxygen saturation check and medical history session by our cardiologist's nurse.  I was in the midst of telling her Jadon's medical history when I noticed she kept readjusting his sat probe.  It was reading in the mid to high 70s.  I quickly informed her this was baseline and she shut the machine off. In the course of conversation I told her he had RSV and that I was trying to keep him away from all the other cardiac babies.  She agreed it was a good idea and took me to a room to wait for the doctor.  "It will be a bit of a wait as the doctor is seeing another patient, but this way you will not have to sit in the waiting room with all the others," she said.

I was led to a small dietician's consult room to wait as the examining rooms were all in use.  I fed Jadon, played with him, played with him some more,  and slowly started to get very tired.  I had not had time to grab breakfast and it was 12:45pm at this point.  My lone source of sustenance, apple juice, was not cutting it anymore.  I dug around in the diaper bag and found a Mars bar.  I felt like a little rebel chomping down on a chocolate bar in the dietician's consult room.  The room had posters of the Canada food guide, articles about healthy cholesterol and plant sterols, and a pictorial of what a healthy plate of food looks like.  It may have been the only time a chocolate bar has or ever will be eaten for lunch in that room...hee hee :)

We waited well over an hour for the physician.  At which point Jadon became sleepy and dozed off in my arms.  Finally, the cardiologist's fellow showed up, asked some questions, then told me the results of the ECHO.  He said they can see the tetrology of fallot, the shunt is working well, and the pulmonary artery is a decent size.  Say what?  I was told he had a really small, underdeveloped pulmonary artery.  The fellow explained to me that sometimes with increased blood flow the artery will grow. It appears that is what has happened!  This is very good news!  I was also told that he is not "shunt dependant".  In plain English this means:  If he develops a clot on the shunt he will go very blue, but he will not likely die if he is brought to the hospital urgently.  His body will use other vessels to get to the lungs.  This was music to my ears!

Once the attending doctor came in, he introduced himself and said he will be Jadon's Sick Kids doctor from now on.  He explained Jadon's heart condition in detail, and said they would be presenting his case to the cardiovascular surgical team at either next week's meeting or the first one in January.  Once that has happened, we will be called in to meet the surgical team in the preceding weeks.  He also offered to arrange consults for the other needed specialties: ENT, Gen surgery, and genetics.  ENT for his ear, Gen surg for his swallowing/feeding issues, and genetics to rule out a chromosomal issue.  Hopefully things get arranged soon.  I  hate don't enjoy waiting. I was told that since Jadon is reasonably healthy and his shunt is functioning well to expect his surgery in 3-6 months.

While typing this blog post, my cell just rang.  It was Sick Kids.  The cardiology fellow was on the line... he called to say the list of patients was too long for Monday's meeting, and that Jadon would be presented at the first meeting in January.  After that, I would receive a call.  He then said, "Are you ok with that?"
"Yes."  ...what else could I say?
I was a bit deflated but I also realize that nothing will be done during the two weeks following next Monday's meeting anyway.  Christmas holidays are coming.  Even the pediatric cardiologists and pediatric cardiovascular surgeons need a vacation. 

Just don't be gone too long...Jadon needs you.

Saturday, 22 November 2014

Not your typical diet...

When most people think of the D-word they think of a conscious effort to eat healthier and in turn drop a few pounds.  Jadon is not in need of that.  He needs to gain weight.  Just as losing is hard for most of us, gaining seems equally hard for him.

Jadon is small. Like, less than the 3rd percentile.  We feel it would be great for him to be a little bigger before he undergoes cardiac surgery so we are trying to fatten him up a bit. 

Part of the problem is he is unable to swallow anything with chunks.  He chokes on anything that is not the consistency of pureed pumpkin soup.  No lumps whatsoever.  We are guessing this is related to his esophageal atresia that was fixed at two days old.  It is possible that he may need his esophagus dilated or stented.  Hopefully this will be addressed sooner than later.  But in reality, I am guessing it will take a number of months before there is anything done to address this issue.

So... we have resorted to trying to feed him as often as we can during his waking hours.  If we give him a lot at a time, he vomits.  So we continue with frequent, small portions, of infant cereals, yogurt and baby food jars made for babies that are the 4-6 months old.  At this point, we do not blend up our own food as our economy job blender does not puree small quantities to a fine enough consistency. 

Yesterday, Steph came home pleased.  He had found some high fat yogurt.  6% fat!  Maybe this will help!

Another thing that we think might help with weight gain is the good, old, Canadian winter!  In Vietnam, Jadon would sweat profusely with each feeding of his warm bottle.  The temperatures outdoors were humid and often above 30C.   Indoors, the temp was around 25C.   When we kept the indoor temp lower, the room felt chilly :)  In Canada, winter has arrived early.  Snow is scattered along the grass like a loosely woven blanket.  The house is heated, but only to temps around 21C.  This big drop in temp allows Jadon to drink his bottle without his hair and back completely soaking in sweat.  It was as if every bottle was a work-out while we were in Vietnam.  Now, Jadon has a few beads of perspiration on his forehead occasionally, but rarely soaks his hair or clothing with feedings.
Maybe, just maybe his weight will start to increase.

I might be just hopeful, but as I look at this pic taken on night one with Jadon, I think maybe he has gotten a teeny bit fuller in the cheeks.

Monday, 17 November 2014

Finally Home! My wife is AWESOME!

Home at last!  We landed shortly after 9:00, were picked up at the airport by our good friends Yu and Carolyn Chen and got home around 11:00.  It was great to walk in the door with all of us here together!  Mom had prepared a nice snack, as well as picked up fruits and milk, and had baked muffins and prepared a Shepherd's pie for supper tomorrow.  Very little for us to do in the food prep area which is great!

We chatted and hung around for a bit then all the kids went to bed eventually.   Of course, the last one to do so was Jadon.  He is not so sure about things and is trying to figure things out.  He didn't like the winter coat nor the car seat... but being in Canada he will have to put up with them for a long long time!  Once Jadon was looking a little tired Sara was able to lie down with him.  They are sleeping soundly now... hopefully for a long time!

Have I ever mentioned how amazing Jadon's mother is?  How remarkable a woman my wife is?  In an adoption, the primary goal is typically to help create bonding and attachment to the primary caregiver, which in many cases is the mother.  This helps to quickly create a 'safe spot' for the newest, overwhelmed member of the family.  We did the same.  Sara did the majority of the hands-on care giving while I did more of the support work (like prepare and then wash the bottles that Sara would feed to Jadon).  While this is really nice for Sara because she is the one that Jadon opens his arms to the most, and the one the he wants to be held by, and the one he smiles his best for etc... it can also be very tiring.  Because often, she is the ONLY one that he wants, specifically when he is not feeling great - sick or tired.

The last few days have been exhausting for Sara.  Saturday evening we went to the hospital and Jadon was admitted.  The two of them stayed there from then until Monday morning around 8:15 when we picked them up on the way to the airport.  I have been fighting this crazy long fever/cough that first Logan and then Rykauna got.  In between fever spells with enough Advil, I feel fine to do some things.  However, we did not want Jadon to get whatever bug this is so.... we have even more limited my direct dealings with him, and even my bottle preparing, feeding etc... were stopped.  I couldn't go to the hospital to stay and help Sara out with Jadon.  Logan went in for about 6 hours to help out as much as he could.  Overnight, it was mommy, mommy and more mommy.  On our two flights today, a total of about 17 hours flying time, Sara had Jadon for the majority of that time.  While the rest of us were sleeping or chilling, she was comforting, entertaining, feeding.  It really bugged me to see Sara working so hard when I was just across the aisle really not able to do very much.  But Sara was an absolute trooper.  No complaints(ok maybe a couple little ones), a smile on her face (with occasional tears), Sara went through this all.  She got likely about 5 or 6 total sleep hours over the last 3 days.

I am so proud of her.  I am blessed to have her as my wife.  Rykauna, Logan, Hudson and Li Lin are blessed to have her as a mother.  And now Jadon will also come to know how blessed he is to also call her mom!

An excellent wife who can find? She is far more precious than jewels.
Her children rise up and call her blessed;  her husband also, and he praises her:

Proverbs 31:10, 28  

Sunday, 16 November 2014

On our way!

Just a short post to get you all know that Jadon just got discharged.   He is fit for travel.   Who knows about the rest of us!  We are heading to the airport in about 10 and hopefully all goes well.   We will be landing in Toronto about 8:45 pm Toronto time.   Thanks so much for all your prayers.   Please continue.   On the home stretch now!

Saturday, 15 November 2014

Update on Jadon

I just got back from the hospital.  Jadon spent an ok night but the good news is this morning he coughed up a piece of meat which was what had become caught in his throat.  The bad news is that he developed a fever.  It turns out the he once again has bronchitis!  So, the plan is to keep him in the hospital until tomorrow morning and the kids and I will stop by on the way to the airport to pick Sara and Jadon up.  Talk about last minute!  The doctor would like to keep Jadon hydrated and will give him IV antibiotics to combat his bronchitis.  She wants to make him as healthy as possible for the flight.

Meanwhile, I am fighting the fever that Logan at the beginning of the trip, and Rykauna more recently were fighting.  Because of this I can't stay at the hospital with Sara.  Logan is there right now for a few hours to help Sara with Jadon and to keep her company.  I will take a couple hours sleep to try and get rid of this fever and then we need to get all packed up.

This trip has been quite the challenge in a variety of ways.  Please continue to pray that all would work out and that we will not have any more hiccups before we get our little guy home!

Please Pray Again... Another Night in the Hospital

This post was supposed to be about the fusion between East and West that you find so many places throughout Vietnam... the food, the architecture etc...  however, Jadon is once again in the hospital.

We figured that with three visits to the Family Medical Practice, one overnight there, as well as a cardiologist consult at Tam Duc Hospital (where Jadon had his heart surgery done) was enough of a insight into the medical care in Vietnam.  However, apparently not.  Today at lunch, Jadon aspirated some food.  Due to his esophageal atresia, though repaired, this is a fairly common occurrence.  However today, he didn't seem to be able to clear out his lungs properly, and his breathing was rattly for the rest of the afternoon.  When he wouldn't take more than a couple ounces of his milk bottle, and immediately spit up when we fed him his baby food and cereal, we thought we should bring him in.  Sara and I went with Jadon to FV Hospital, a French Private hospital.  The doctor was concerned that he could not/would not eat and drink.  This is a concern for most children, but with Jadon's small size and his heart shunt - the pediatrician is concerned that if he does not have enough fluid, his blood will thicken and cause issues with his shunt.

So, she has admitted Jadon overnight for observation.  The plan is to have him fast overnight but give him IV fluids to keep him hydrated.  Then attempt to get him to drink tomorrow afternoon and hope all goes well.  When something like this happens, we don't know whether to laugh or cry... so we have done some of both!  We would really appreciate prayers that all would be settled so that we can make our flight on Monday.  We can't wait to be home with Jadon and all the kids!