Wednesday, March 7, 2012

The Journey Continues…

Whew, I’m now caught up to “real time”!  There are two posts today (if you get this via email, there will be 2 posts in one email).  So, here’s the continuation of the boys’ journey home…


Monday morning, March 5, my hubby and I decided the best course of action was to take the boys to Dell Children’s Hospital to have their labs drawn, urinalysis, and whatever else they felt necessary after meeting the boys.  Our pediatrician and the hospital at Dell had both recommended outpatient services to meet the boys’ needs, but both boys simply were not eating or drinking sufficient amounts and were becoming more and more lethargic.  We felt the best path for everyone would be to take the boys directly to the ER and go from there.


We were so grateful for our one full day at home with all of our kiddos together before having to pack up again to head to the hospital.  I was able to get all of our suitcases unpacked, all of the laundry caught up, and felt a peace about leaving, knowing things were organized, and we’d had a chance to love on all our kiddos before heading back out for an indefinite amount of time.  So, so, so glad we didn’t go straight to the hospital from the airport because I treasure that one day together as a family (Sunday).


When we got to Dell ER, it was C-R-O-W-D-E-D!!!!!  We prayed for favor, and we received it when they called us back much more quickly than we anticipated.  The ER doctor was so very compassionate and fabulous.  He was educated in refeeding syndrome, which was our main concern. 

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The boys waited so patiently in their stroller.  The ER doctor ordered blood work and a urinalysis on each boy. We were positive Conner would have tons of issues and Cooper would be just fine, so imagine our surprise when we were told that Cooper’s blood sugar (glucose) level was at 30 and Conner’s was at 58 (normal is 100-120; 30 is usually comatose/seizures/convulsions/profuse sweating).  Cooper showed no signs, other than lethargy.

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Needless to say, both boys were admitted without reservation for extreme malnutrition, dehydration, and further testing.  After 9 hours in the ER, the boys were given separate rooms on the main floor (after Cooper’s blood sugar stabilized).  Dell only has private rooms, so they required each boy to have their own private room.  My sister came and stayed overnight with Conner while I stayed with Cooper.  My husband went home late that night to stay with our kids at home.


Cooper had continued fluctuations with his glucose levels overnight, but by morning things stabilized once they figured out the correct rate and mixture of IV fluids, being mindful of refeeding syndrome with electrolyte changes occurring too rapidly.  Conner did fine through the night.


Tuesday morning was a flurry of activity as MANY specialists got to work evaluating the boys.  First, both boys had echocardiograms to check for any heart problems, which is common in people with Down syndrome.

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In Ukraine, we had been told by the SDA (department of adoption) officials, as well as by the orphanage doctor, that Conner had two heart defects.  We just didn’t know the severity or exactly what type of defects. 


Imagine our utter elation to be told by the cardiologist that NEITHER BOY has a SINGLE HEART ISSUE!!!!!!!!!!!!!!!!  Abundant praise and glory to our Jehovah Rapha, who healed Conner’s heart.  Glory be to the Lamb!!!!!!  Someone left me a Facebook comment that they could just imagine our Princess Chrissie interceding with prayer for Conner’s heart to be healed so that we wouldn’t have to live through another open-heart surgery.  We were prepared to do have Dr. Porisch and Dr. Kupferschmid (Chrissie’s heart docs) take care of Conner’s heart, but having Jehovah Rapha provide His healing is abundantly better than our earthly team of docs (whom we LOVE).  Whatever gives God the most glory, we’re in.  This positive (and shocking) report filled us with so much joy, elation, relief, and praise that words are simply not adequate.


Via Facebook, I asked for prayers that the hospital staff would allow both boys to share a room, as that would be better for all of us.  By Tuesday afternoon, we’d received approval for both boys to share a bed for the day.  Hallelujah!

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Having both boys in the same room allowed my sister to go home and I was (am) able to attend to both boys since they’re together at all times.  This is such a huge blessing and answer to prayer!


By Tuesday evening, many of the test results were back and we had more answers and more plans in place.  Cooper has hypothyroidism (and has started meds for this), he’s anemic, and he’s hypoglycemic.  The endocrinologist said she believes the hypoglycemia is due to severe malnutrition, which will slowly heal as Cooper begins to receive adequate nutrition, so we should see less fluctuations within a few months, with hopes this will disappear within a year or so.


Conner’s labs and all test results have SHOCKED us.  God’s hand is all over this tiny boy.  It looks like everything is fine with him, other than being severely malnourished!!!!  Everyone is shocked by this because he’s so very tiny and fragile…literally just skin and bones.  He’s been surviving on less than 300 calories per day, yet his organs are still functioning, he’s not anemic, and everything looks to be OK for him!  As I said before, whatever God chooses to bring Himself the most glory, we’re all on board, and there is no other explanation for this glorious report than the hand of Jehovah Rapha.  May He receive all the glory and praise for this miraculous report for Conner!


Both boys needed to have feeding tubes placed (NG tubes, inserted through the nose into the stomach to deliver liquid nutrition to the boys) in order to begin slowly healing from severe starvation and malnutrition over a 6 year span.  The nurses got the NG tubes in both boys (not without a fuss!), but then both boys became overly OBSESSIVE with getting those tubes OUT of their noses. 


Cooper’s IV infiltrated, so we had a minor catastrophe.  (The IV went bad and the IV fluids went into his hand and arm instead of into his vein.)  It took about an hour to get a new IV in, after many sticks and tries.  Poor guy!


The fight against the NG tubes didn’t lessen, so we ended up having to re-tape all of Cooper’s tubing since he destroyed it with his plight to remove it.  Conner pulled his tube out of his nose several inches several times, so the nurses decided both boys needed mitts securely fastened to their hands to help prevent the boys from pulling their NG tubes out.  We had a constant battle on our hands for a few hours after the NG tubes were placed late Tuesday afternoon, but then the boys fell asleep for the night, in the same bed.


We were so grateful that the night nursing staff agreed to allow the boys to sleep this way the entire night. 

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Both boys slept soundly Tuesday night (well, Conner woke at 4AM when they did vitals and never went back to sleep, but he was quiet and content in the bed until 7AM).  By morning, both boys were much more tolerant of their NG tubes, praise God!


The doctors and nurses have had a difficult time determining which boy is which, so we labeled the boys gowns clearly.  Everyone says the boys look like twins.  We don’t think they look anything alike, except that they both have brown eyes and Down syndrome.


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Wednesday was a good day for the boys.  They tolerated their new feeds well.  They’re on a pediatric formula that is being introduced at a very slow rate.  They started off receiving 5ml/hour, with instructions to increase the feeds every 24 hours, increasing in increments of  5ml per day, as long as their blood labs are good each day, not showing any signs of refeeding syndrome.  So far, so good!


The boys had physical therapy Wednesday afternoon, and bless her heart, Conner’s PT accidentally pulled out his feeding tube…entirely.  She was so sorry, but Conner was so excited!!!  He stood up and laughed and came to life!!!


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Cooper has been trained at the orphanage to pee and poop on the toilet, but he was also still in a diaper.  Since being in the hospital, Cooper hasn’t been peeing or pooping…not in his diaper OR on the toilet.  We’ve found that the only time he’ll pee is when he’s in a DEEP sleep, then he lets it all out, soaking through his regular diaper, with another larger diaper over it, plus saturating his entire bed.  LOTS of urine!!!


Matt bought a potty seat for Cooper since the hospital doesn’t have any.  I sat Cooper on it Wednesday afternoon, after he’d held his urine in for TWENTY HOURS!!!  I requested prayer via Facebook, and shortly thereafter, Cooper did his thing.  He was SO PROUD of himself when he PEED on the potty!!!  YAY, Conner!

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Cooper pulled out his feeding tube Wednesday night, but was cooperative when a new one was dropped (placed).  Both boys are slowly gaining strength as their bodies are finally getting some nourishment.


Conner seemed like a total livewire Wednesday afternoon.  He stood in his crib several times, reached out to people to hold him, laughed several times, and seems so much stronger than he was even Wednesday morning.  He still has such a LONG way to go, but it’s so encouraging to see strength restored.  He still won’t accept anything by mouth, but we don’t have to worry about forcing anything now since he has his feeding tube, which is such a relief for all of us.


Cooper is eating by mouth, but not enough calories or nutrition to restore him, which is why he has the feeding tube with nutritious continual feeds filling his belly.


The plan is that the boys will need to stay at the hospital until Monday, March 12, at the minimum.  The boys must reach their feeding goals (set by the nutritionist and dietician), and since their tube feeds can only be increased at the slow/safe rate of 5ml’s per day, it will be a while until they reach their goal.


They also have to be monitored continuously for signs of refeeding syndrome, which can only be detected via blood work.  That has to be caught early to avoid death, so the hospital won’t release the boys until they’re sure that they’re no longer at risk of refeeding syndrome.


Both boys will go home with NG feeding tubes for an undetermined amount of time.  Matt and I must be trained in “dropping” (placing) the feeding tubes, as we’ll be responsible for this in our home.  We’re still waiting on a few tests to come back on Cooper, but so far, everything looks good, other than his hypothyroidism, anemia, and hypoglycemia, and, of course, malnutrition on both boys.  Everything seems very manageable, and our stay at the hospital has been filled with compassionate, wise caregivers.  We feel so very blessed to be here, even though our preference would be to be HOME as a family.  That will come soon, and for now, we are praising God for His mercies, which are new every morning.


Thank you for praying and encouraging us along this journey.  We’re grateful for you.

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