Honestly, we didn’t really know anything until yesterday.
Let me start by saying the MRI was an experience. Levi did
great but it was a LOOOONNNNG day. Our adventure started as we journeyed down to Duke on Thursday and it appeared Levi had caught a cold and was sneezing, fussy, runny nose, cough…ect. They told me if he was sick and running a fever we would have to re-schedule because of him having to be put under. Before we got too far down the road I called Duke and told them what was going on. The nurse told me as long as there was no fever we were ok. And there wasn’t. So we continued.
However, Jackson decided to wake up with a blazing fever at
2am. He woke up crying for water so he began to guzzle, then I pumped some
Tylenol in him, and well….bad combo led to him puking all over me. Needless to
say after changing, stripping him down, and a pretty much sleepless night we
woke to a coughing, stuffy baby and a feverish big brother. Nice combo for a
long day at the hospital. Stuff like this always seems to happen when we aren’t
at home!
We questioned calling them and re-scheduling and heading for
home but decided to just go in and see what they say. Meanwhile we kept Jackson
on a regular rotation of Motrin and Tylenol which kept his fever down. I have
to say he was a TROOPER for all of this. I am not one of those moms that will
take my kid anywhere when they are sick so this was NOT my norm…but we had no
choice.
The Duke Children’s hospital is pretty spectacular and there
were so many cool things to look at and see that I believe that helped him
survive the day. We also took him and got him whatever snacks, drinks, food
items…ect he wanted while Levi was in the MRI so he loved having our attention
to himself.
I am SO impressed at the care we received from the nurses to
the doctor who was educated to know that Levi didn’t just have a ‘bad rash’. (Some
of the doctors here aren’t so knowledgeable about Levi’s port wine stain) They
were all truly concerned and knew why we were there and what they were looking
for. Wes kept saying it is the difference between being at a “For profit”
hospital system vs and “Educational” hospital system. Amen. Truly top notch!
Levi is a trooper. The nurse gave him some baby “valium”
before they were to place the IV in to help relax him. That stuff made him so
drunk and gave us lots of laughs before the moment I dreaded the most through
the whole process. Jackson had Levi belly giggling a lot just by looking at
him. The doctor listening to him with the stethoscope cracked him up. It was
hilarious.
Unfortunately, the valium only helped to make him less
wiggly as Levi has mommy’s poor veins and the IV experience was something I
hope I don’t have to relive for a long time. Two nurses and me holding him down
screaming before we got it in. I almost shouted “Hallelujah!” when she finally
got the vein. I’m not ashamed to admit I shed a few tears myself in the
process. They had to stick him several times and went from the foot to the arm
before they found a good one. They wrapped his arm up as if he had broken every
bone in it to prevent him from pulling it out. I then had to sit there and hold
him for the longest 20 min of my life before they administered the drug to
knock him out.
Finally, the drug kicked in, he settled off to a nice sleep
and they wheeled him down the hall for what we were told would be about an hour
and ½.
The reality was: total MRI time ended up taking 3 hours. It
was thorough and because of all the pictures they were ordered to get (per our
doc) and it being opposing limbs it took some moving the machine around ect. It
ended up taking a lot longer than they anticipated. We were told he also woke up twice during the
MRI. So they had to give him more meds to knock him back out which took some
time. The second time it happened was unfortunately just 10min before the test
was over so needless to say he was taking a nice nap when they wheeled him back
to us. We weren’t going to be able to leave until he was awake and could keep a
bottle down. Like I said, it was a LOOOONNNGG day. Jackson kept going up to the
side of Levi’s bed saying, “Wake up y, wake up!”…Poor kid had taken naps on our
lap, was still feverish and not feeling well, and wanted out of there as much
as we did. 
Levi had been ‘fasting’ from 3am that morning and around
2:30ish when he began to stir, the nurse gave me some pedialite and told me to
mix it with apple juice to try before his bottle to see if he could keep it
down. With his eyes still closed, he grabbed hold of that bottle white knuckled
as if he was going to eat the nipple right off. He sucked that baby down in
about 5 min. And kept it down. 10 min later she told me to try formula. And
baby, that boy was HUNGRY! He had a death grip on my hand.
He still had a hard time keeping his eyes open however he
had successfully kept down food so they let us go…he was drunk for a bit but
overall, he did SO good. Better than I thought. I was so so glad to be walking
out of there that day and that the test was over. 
Now, for the results.
Just before Christmas our doctor called me and told me she
looked at the MRI and was baffled. No vascular issues at all. Nothing strange
going on with the veins.ect. She said while it was good news it was also not
good news because she couldn’t give us any answers. She wanted to present him
to her vascular team in Jan and get some other eyes looking at the MRI and
would call us back then.
Yesterday I got that call.
Basically the long and short of it is this. They all
defiantly agreed that there was something going on in the hand and foot more
than just chubby baby hands and feet. (That made ME feel good to know it wasn’t
just me imagining things)
The radiologist is suggesting it is something called
Lymphedema and something is going on with his Lymph system and not his vascular
system. The MRI showed the issue is more prevalent in his foot more than his
hand which shocked me because I think his hand, and one finger in particular,
look worse….but…no.
She said per their discussion it may be the start of
something called “overgrowth syndrome” and we need to watch for signs of one
foot growing larger than the other…etc. Something that is connected with the
KTS syndrome or a few others that they told us about that is associated with
Port wine stains from the start. However she said she can’t give a diagnosis of
any of them as his case isn’t severe enough right now to justify that but
something she is going to keep in the back of her mind as we continue watching
him.
She confessed as a physician she wanted a clearer answer or
diagnosis to give us because then we can know and help to ‘fix’ that. But the
best she could say for him was we continue to watch and wait. Unless it worsens a lot, we will be seen by
her every 6 months to continue to evaluate him as he grows. As he grows it will
be easier to determine what is going on or the path of any type of diagnosis
that may come. In any case she doesn’t feel like if he were to get a diagnosis
in the future, his KTS would not be severe as he is SOOOO healthy otherwise
now.
We are going to have to wear a compression sock on his foot
to help keep the swelling at bay because a constant buildup of fluid can cause
infection. The compression should do the trick to keep the swelling down. If
his hand worsens any more she will prescribe us a glove but she felt like the
compression was a definite need for his foot right now. Especially because he
is trying to walk and upright about 80% of the time now.
So, no real answers. A few very very educated ‘guesses’ as
to what is going on but all in all….only God knows. A true test as parents to
just rest in Him where Levi is concerned and that we just take it one day at a
time.
Being at Duke and seeing a lot of kids being wheeled by
missing their hair from cancer treatments, hearing about MRI’s being done to
look for tumors and other life threatening things, Levi’s issues seem so
miniscule in comparison. We realize what a blessing it is that we aren’t
dealing with anything so life altering for him. He was born so special and
uniquely and this is just who he is. This is just what we have to do for him as
his parents. And he was entrusted to us to take the best care possible for him
that we can. So we do that. And we trust that God has it all under His total
control. Just as God ‘fights’ for us, we will ‘fight’ for him as we watch him
grow. He is so healthy otherwise so while there is concern in my heart, it
doesn’t scare me. It’s just something that is and we listen to
the advice of the doctors and pray for wisdom as to what we need to do for him
as his parents. That’s all we can do.
Thanks so much for your concerns and questions. We are so
blessed with so much support from family AND friends that truly care about us
and our little family. It is a gift. A
gift that not everyone has the pleasure of having.
So thank you.
**Oh and…after 5 days of Jacksons fever and dragging him to
GA for a family holiday weekend after our Duke day …I took him to our doctor
that next Monday…turns out the poor kid had a mono like virus. We just had his
bloodwork re-done this week and all is back to normal but looking back at all
we did and expecting all we did out of him, man…he is a trooper! (and I feel like a bad mama for dragging him
around!)
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