Thursday 30 October 2014

Speaking of unknowns!

Thank you all for your thoughts and prayers.  We do appreciate them, felt supported by them, and continue to recognize our need for them.

The last 36 hours have been a complete blur.  After yesterday's Giving and Receiving Ceremony (I will write a short separate blog for that), Li Lin and I headed home to be back with the boys while Sara, Rykauna and Jadon went around with Loan (our helper from our adoption agency) to get some paperwork done.  As soon as they got home in the afternoon, I left with Logan to go back to the clinic for a MD requested follow up visit as he still had his fever and bad cough.  We debated bringing Jadon in as well since his breathing was laboured and he seemed quite lethargic.  His behaviour was one of a cardiac child, but we had been assured his heart surgery had been complete and successful.  We also asked at the orphanage a couple of times if he was on any medications and they said no.  Anyways, we decided that Jadon and the other kids would stay with Sara.
The Clinic at which we have spent many hours!  They are wonderful, but hopefully we don't see them again!
 Shortly after I left with Logan, Jadon threw-up the bottle he had been drinking.  He was breathing very rapidly,  had a significant rattle in his chest, and was labouring to breath.  Sara noted typical signs of respiratory distress:  dark lips, nostrils flaring, and trachea was tugging with each breath.   Sara and the 4 kids hopped in a cab and came to join me at the clinic.  By this time, Logan and I were waiting for the results of his bloodwork.  Jadon was brought in, given a nebulizing treatment to loosen his congestion, had some bloodwork done and got an x-ray.  The doctors and nurses at the clinic were wonderful and went above and beyond.  They had very little history on Jadon and so wanted his medical files sent over from the orphanage - by now it was too late to get it for the day.  With Jadon's laboured breathing, they decided to keep him in overnight for observation.  So once that was decided, I cabbed home with the other 4 kids, fed them and tucked them into bed, then cabbed back to the clinic to bring food and formula for Jadon.  I returned in time to help Sara and Jadon move into their room and settle down.  Once they were tucked in I headed back home for a sleep.
Jadon getting a nebulizer treatment (saline to loosen secretions)
Mommy and Jadon getting ready to be tucked into bed.  The IV was in case of an emergency.  It was not used.
Morning brought many surprises.  Sara had been in contact with Loan, and the orphanage sent the medical file over first thing in the morning.  They also sent the nanny that was his regular caregiver to come to the clinic and help out and answer questions.
Jadon's main nanny came to help.  He is well loved by the nannies.  Two others came by to check on him.
Li Lin and Rykauna came with me to pick up Sara and Jadon.  Here we are at a restaurant across the street.  Pho, mmmm.
Here is a card Li Lin made for her brother (with help from her dad)
His sats were still around 80% - which is normal for a child with significant cardiac issues but since Jadon's had been fixed, he should have sats over 95%.  We were informed by his nanny that he used to sit around 60% before his surgery, and that now he sits around 80%.  At this point the cardiologist in the clinic told us that as he was reading the file, it seems Jadon's heart has not been fully repaired.  He had a palliative fix with a stent put in (sort of a band-aid to help him immediately) and allow more blood to get to the lungs.  So, the laboured breathing, slight blue lips and some lethargy that we had seen is likely Jadon's current baseline.  He has moments when he gets excited and we can see the mischievous grin and the energy but these times are short lived as he is soon once again working on his breathing.  He will at some point, upon our return to Toronto, need a full repair done at Sick Kids.  We can roll with this new normal, but it does add a level of stress and will change our plans to travel a little around Vietnam.  Jadon is not really healthy enough and we will need to stick close by just in case.  Actually on Monday, we will be having a follow-up visit with the cardiologist/surgeon who performed the surgery to get the details and any pertinent information.  The doctors at the clinic said we need to get a "fit to fly" clearance letter.  It is possible we may need to arrange for supplemental oxygen for the flight if he feels Jadon needs it.

Once this was known, and Jadon showed no signs of infection, we were discharged from the clinic.  As we scanned through his previous medical files from the surgery hospital, we noticed that he was at a follow-up visit early October and that his current prescription was noted to be a daily aspirin to keep the blood thin and prevent clotting in the stent.  We were concerned because we had been told by the orphanage that he was not on medication.  Loan contacted them again and another nanny showed up bringing a bag full of medication and Jadon's daily medication intake.  Surprise number 2!  Despite the frustration of having to go in to the clinic for what turns out to be Jadon's weakened baseline health as opposed to anything acute, we are thankful to God that we did bring him in.  If we did not get Jadon some aspirin for the remaining 2 weeks we are here, he would have died from a  blood clot well before we flew home!  They also told us he has bronchitis right now and needs antibiotics and ventolin nebulizations.  We have no access to finding a ventolin compressor so are making do at the moment with puffers and steamy bathroom visits to loosen his lungs when needed.  It seems to be working fine.

We came back home early afternoon.  Jadon fell asleep on me on the way home.  Sara was exhausted and went for a nap as soon as we got home.  Jadon continued sleeping on me and did so for about 3 hours.  My back and neck were stiff and numb but it was worth it as Jadon got a good, much needed sleep.  Jadon actually moved around a fair amount and played well with the other kids for a while around supper.  He is now in bed sleeping soundly.

So, the long and short of it is, we have a son who is significantly more ill than we expected given the information.  Loan from our agency is also shocked and surprised at this news.  As I mentioned in the blog before we got Jadon, the addition of every child to a family brings along a lot of unknowns.  This is one for us.  Please continue to pray that Jadon remains relatively healthy for the rest of our time here and that we can get him home and to Sick Kids to get follow up.  We also will have more work cut out for us once we return as Jadon will have to undergo another open heart surgery.  One day at a time!

6 comments:

  1. Glad to read things seem to have settled down somewhat. Prayers and thoughts have certainly been flowing your way from here and from family. You seem to be in good hands at the clinic no matter what surprises are thown your way. Love to Jadon and to you all. My thoughts and prayers have been in Vietnam these last days and last hour. HIS strenght is with you and will sustain you always. Much LOVE, Grandpapa

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  2. Praying everyone is feeling better soon and that no more visits to the clinic are needed. Xo

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  3. So thankful you have access to this clinic and that one of Jadons nurses was there to help. And OH SO thankful you now know that he needs aspirin. Poor little man. We're praying for you all. Jill.

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  4. We definitely can see God's hand through all this. In all the surprises...There are definitely good ones. The nanny for example and the daily dose of aspirins. Hopefully when comes time to fly home that little Jadon is fit to fly.
    I guess this will put a damper on your trek to the beach.
    Definitely praying that all is uphill for now and that you can enjoy some Vietnam time. My prayers and my heart are with you practically every minute of the day.
    Praying you all safely home. Grand-maman xoxoxo

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  5. Surprises to us but not to God!! Holding you up in prayer! The Sharps

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  6. What a precious little boy...the gals all think he's just adorable!!!! Really lifting all of you up in prayer and hoping that Jadon's bronchitis and Logan's virus will clear up very soon. You guys must be totally EXHAUSTED too, so praying for strength as you go through this journey with your new boy. Congratulations on the official adoption of little Jadon!! Love you! Pamela xoxoxoxooxox

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