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FEBRUARY 11, 2005
Well, exciting things are happening. We are going to be taking Sam to a place
called Miracle Mountain in the mountains of North Carolina where he'll receive the hyperbaric oxygen treatments, as well as
some therapies, at a fraction of what we're paying the doctor in Palm Harbor. This was a co-op set up to provide this
treatment to children at an affordable rate - $54 per treatment as opposed to $250 per treatment we're paying now. He'll
get two treatments a day, for 24 days, as well as some other therapies that I haven't read enough on yet to explain.
Anyway, when I first checked into going, I learned that they had no openings until
August. When I called, I was told that they had just had a cancellation and could get us in for the next
session in March. Then I found out that only 3 people can be in a room there, no exceptions. Tim will stay in
Florida and hold down the fort, but my mom and Ben are coming with Sam and me, so that wouldn't work. I was a bit disheartened,
but figured we could rent an RV or try to find a hotel somewhere. I really figured if we were supposed to
take Sam there, God would build us a hotel if we needed one! Well, it turns out they have overflow lodging only 7 miles
away that will accomodate us, but that was booked also. Again, a last minute cancellation came through there as well
(actually as I was speaking with the nurse there) so we're set.
But wait, that's not all! I know I've shared this with a few of you, but
I think we've had a "water into wine" type miracle! Sam's head, since his birth, has been a bit odd-shaped from all
the trauma and possibly from his brain growing abnormally (some parts growing, some parts not). It was kind of angular,
with what some nurses referred to as "suturing" and basically just abnormal. Hard to explain if you've never felt it.
It wasn't a good sign, but we just kept that info tucked way back in our minds because there's just not much you can do when
a doctor tells you that. Anyway, I was sick last week and trying to keep him healthy and away from me, so I only
tended to him as absolutely necessary for two days - no holding him and cuddling him like I normally do. On the
third day, I couldn't take it anymore, and when I rubbed his head to calm him down I found that it's rounded out and become
quite normal! It's astonishing - Tim and my mom noticed it too, as well as the nurse who tends to Sam. It's absolutely
incredible.
So, while we wish the miracles would happen a little faster and Sam could just
pick up his bed and walk already, we are still reminded daily not to lose faith. Good things are happening and all those
prayers are being answered.
Thank you again for keeping us in your hearts and prayers. You're
all part of his healing - we're very aware of that and grateful. And you already
know my favorite saying: "God has a plan for him; Sam's going to be okay."
JANUARY 25 2005
Well, I know I owe everybody an update, especially since I haven't had the
time yet to sit and rebuild the website. Yes, it does indeed seem to be lost in space.
I'm assuming it's lost forever so I don't go crazy when I find out for sure that it's lost forever, but I am going to try
to rebuild a little at a time, starting this weekend...next weekend....what day is it again?
Sam is doing very well. His head control gets better all the time - he can
now hold his head up and glare at me, instead of having to wait for me to lift his head up so he can glare at me! His
reflexes are coming back - the Babinski reflex and Planter reflexes are back and strong, and they were non-existent before.
He gagged for the pulmonologist in her office - she didn't quite believe me that he was gagging, so she stuck a tongue depressor
down his throat when I wasn't looking, and he performed beautifully. His sucking reflex is still strong and steady,
just like it oughta be. Next step is swallowing, and that can't be far behind. I'm still waiting for him to smile
- plan on not hearing from me for a while when that happens, as I am fully expecting to sit and stare at him for days on end.
He's a tank. Or two tanks. He weighs about 18 pounds now, which is
about 3 pounds more than average for his age. Seems to be gaining close to a pound a week - he's making up for all that
trauma he had. His head is growing, which is very important, because it means his brain is growing.
He's still getting the oxygen treatments, and is doing really well with them.
Unfortunately, it's come to our attention lately that the doctor is more interested in making an enormous fortune than in
helping people, and he is in a position to help so many people. That's more than a little heart-breaking since he was
one of the few doctors I trusted. Actually, he was one of only two doctors I trusted - my list has stopped being a list
and is now just a name. We'll pray for God to soften his heart; in the meantime, he's the only game in town and we'll continue
to grow his fortune, somehow.
And here's another little miracle for you - everybody in the house got sick EXCEPT
SAM! We have been fighting fevers and streph throat and all kinds of bubbling goo, but Sam hasn't gotten it. So
woo-hooo little Mister immune system! (I'm almost afraid to ruin it by mentioning it, but that's silly, right?)
I'll let you all know when I get a minute to rebuild the web page. Thank
you all so much for your prayers and strength. We're winning this battle, a little every day. I can't wait to
see what God has in store for us next.
JANUARY 4
Well, we're home AGAIN from the hospital. Last Thursday, we went down to
All Children's and they released us on Sunday. Sam had an infection in his lungs, exacerbated by the faulty equipment
we received from the home health care company. Because he has a tracheotomy, he needs humidified air to breathe into
his lungs since his nose and airways, which take care of that for us, don't do that for him. The humidity
keeps everything going smoothly and beautifully, and allows him to cough up what he needs to, just like we do. When
that can't happen, he can't fight off the ick.
The humidifier broke the beginning of last week, and despite my screaming, nagging,
and yelling, we couldn't get the health care company to come take care of it. (They thought I just didn't understand
how it worked. They thought I don't know the difference between wet and dry.) Anyway, after a few days of that,
the crud in his lungs gunked up and caused an infection in his lower airways, which rendered him too exhausted from trying
to breathe effectively to actually breathe effectively, so they kept us while they knocked the bug out of him.
We are home and he is doing well. We're back in the hyperbaric oxygen treatments,
which are doing him so much good. (Those and the prayers, of course!) He's getting better head control, moving
his head and eyes to track and follow things, and sucking, which is a VERY important step. He's still fighting hard.
Here's a picture of him after the trach, just a few weeks ago.
It's amazing the strength he has - thank you all again for helping us to pray him
through this nightmare. Oh, and again in the hospital this visit, I had someone say to me those famous words I've heard
so often: God has a plan for him; he's going to be just fine.
We know that's true. And what different people we are than we were 6 months
ago. Wiser, older and grayer, but certainly more in awe than ever before of the power of prayer and God to move mountains
and give us miracles.
God has a plan for him; he's going to be just fine.
DECEMBER 14
We've been set free from the hospital! We just got home a few minutes
ago - I'll fill in
the blanks later, but I wanted to let everybody know. Thanks for all your love and prayers!
DECEMBER 10
Yesterday, I got to hold Sam! For the first time since all this happened almost two weeks ago!
As soon as I picked him up, he snuggled right into me and fell asleep - it was a beautiful thing. I was speechless and
we just sat there for I don't know how long without moving.
And now Sam is out of ICU and in "intermediate
care". They moved him last night. I'll go in this morning and stay until we bring him home, probably on Monday.
(I wasn't allowed to sleep over in the ICU, but in a regular room I can.) He's actually ready to come home right
now, but the logistics of making sure we know what to do in an emergency and that everything is ready (we now need an apnea
monitor and emergency oxygen and stuff like that) will take a little longer. They don't like to release "complicated"
kids over the weekend since resources are scarce, so it will most likely be Monday. (I bit my tongue that he's only
complicated when the well-meaning doctors start crawling all over him.)
They said he's doing so well with the
new surgery; they're impressed at how quickly he rebounded from it, so that's nice to hear. And once we get him home,
we should be able to get back into oxygen treatments in about a week.
I can't say it enough: thank
you so much for all those prayers for him. They changed everything.
I'll let you know when we bring him
home!
DECEMBER 7
...went well! The doctor was really positive and said his lungs look GREAT.
They started weaning him off of the ventilator quickly, and he has been breathing on his own the entire time. Even
during surgery, they took him off the vent and his oxygen level stayed at 100%, which is very good news. He was still
on the vent when we left, but that was most likely because things were haywire with other kids today and they didn't have
time to wean him down all the way.
Thank you all for your prayers and concern. He looks good and is resting
now. I'll update the website with pictures in a few days.
We should be home soon!
December 3
As a lot of you already know, we've had a rough week. Saturday morning, Sam choked for a second
and we called 911, who took us to a hospital where he was fine for the entire 6 hours we were there. Being cautious,
they sent us to a hospital with a pediatric unit. He cried, they freaked, they decided he was terribly sick and ran
a bunch of tests, including a spinal tap, until he actually was so upset he couldn't breathe. Intubated, airlifted to
All Children's hospital. They attempted to remove the tube on Monday, but he had so much gunk in his throat from his
cold that he couldn't clear his airways. They put it back in and decided he needs a tracheotomy to come home.
He doesn't, but we're playing the game and jumping through the hoops - whatever we need to do to get him home. He's
breathing on his own over the respirator, and has been the entire time. The tracheotomy is easily reversed and won't
hinder him, so we reluctantly agreed. They're doing that on Monday, and we should be home by next weekend. And
he wasn't even sick in the first place. I'll update the page with some pics of him at the hospital, but for now I just
wanted to keep everybody posted. Pray hard we can get him home before he actually DOES get sick.
NOVEMBER 29
Well, as expected, the unexpected has happened again. We really need your
prayers.
On Saturday morning, Sam was fussing from his cold. Tim suctioned him and
realized he had stopped breathing (just at that moment; it hadn't been long) and called for me. I banged on his back
and then gave him two breaths through his mouth and nose. He was fine immediately, breathing and recovering, and all
was good.
We had already called 911, but decided to let them come and check him out.
They wanted to take him to the hospital, so we agreed, reluctantly, to that. Again, he was fine and peaceful.
When they put him in the ambulance, his oxygen saturation level (in his blood) only registered at 75%. It should be
close to 100%. So they said we had to go to Helen Ellis, the hospital where he was born, because that was closer than
the hospital we wanted to go to. We went, and as soon as they plugged him in to their machines, his oxygen was 100%,
so we think it was just an error in the ambulance's machine. They always have a difficult time taking blood from him,
so they couldn't do a LOT of tests, but what they did came back negative. They still suggested we go to a hospital with
a pediatric unit, just to be sure, so again, reluctantly, we did.
In the ambulance, Sam pooped. He hates doing that. Makes him scream.
When he screams, he sounds HORRIBLE unless you know him. So we get to the hospital, they think he's in distress, and
jump all over him. They wouldn't let me get to him to soothe him and change his diaper, but suctioned his throat and
made him more upset. He spit up, blocking his airways even more. They decided he was DESPERATELY ill, and
that he needed a huge string of tests, including a spinal tap. We agreed, thinking they knew what they were doing.
Well, all of that, of course, upset him more to the point where they intubated him and put him on a helicopter to All Children's
Hospital in St. Petersburg.
When we got there, we told them our story. They agreed with us that it could
very well be that he was agitated into the whole episode. For a number of medical reasons, it makes perfect sense that
the stress of it caused his breathing issues. So now, he's in pediatric ICU, still intubated. He's wiped out completely,
and when they tried today to take out the breathing tube he reacted poorly and they put it back in. Now, when it's in,
he breathes on his own. It's just there. They think it's possible that the stress has caused some issues with
his throat / neck muscles that are maybe blocking his airways when they take it out. Who knows.
Just please pray for him, and us, that we can get him out of the hospital before
things get worse. We are completely convinced that if we had followed our instinct and not gone in the first place,
none of this would have happened and we would be fine by now. ALL of the tests they took were negative - he wasn't sick
in the first place.
On top of that, the second hospital called (the one that intubated him) to tell
me they gave another baby my breast milk. So I had to get bloodwork and stuff done to keep the other baby from having
to have tests run. Apparently, it's the first time in the history of the hospital - figures, huh?
Anyway, please keep Sam in your prayers. I know he hasn't left them, but
he's in distress right now and really needs your help. Thank you again for lifting him up in your thoughts and prayers
- we're just grateful he won't remember this nonsense when he's older. We wish we woudn't, either.
November 25
Well, not much happened progress-wise this week. On Monday, Sam and I went in the
chamber and he started SCREAMING and crying. Sometimes he does that when he has to poop (sorry, Sam, I'm telling your
secrets) but he wouldn't settle down this time. Because he was so upset he spit up, and when I suctioned his throat
it looked like old blood, and a lot of it. So of course I got upset, and we came out and went to the pediatrician.
His temperature had gone from 97 to 102 in two hours! She spent a lot of time checking Sam and finally determined he
had an ear infection, caused by a cold, which caused a bloody nose, which ran into the back of his throat. We were never
so happy for an ear infection - I was scared it was pneumonia or something and we were going to end up in the hospital!
An ear infection stops treatments, though, as there is too much pressure and would cause him pain (hence the carrying on).
When it clears, we start up again. Hopefully that will be Monday. Monday we also get a different feeding tube,
one that is easier on him as it is close to the body instead of having this crazy long tube that sticks out. It's his
four month birthday, too. What this boy has been through....
November 17
Sam is doing well with the treatments. Well, he's screaming, but that's just because he
hates dirty diapers and they seem to show up when he's in the oxygen chamber. There's no discomfort at all; I know,
because I've been going in with him. I hate it because I'm a little claustrophobic, but I know he needs me so I suck
it up and do it. Because of the pressure, we couldn't just snatch him out if he was in distress, so if I'm in there
I can help him.
Treatments started Monday. It should take 20 visits to see some changes, but since the
swelling will go down more quickly we may see progress sooner. Well, on TUESDAY, day TWO of treatments, he tracked his
mobile with his eyes a little! He hadn't shown any signs of focusing at all until that point, so that was really exciting.
And tonight, as I was stimulating his mouth (so he doesn't reject food when he's off his feeding tube) he came mighty close
to sucking on my finger. Sounds silly, but that would be an ENORMOUS step for him. The sucking / swallowing /
gag deal were all lost together, so this is exciting. Dr Speigel wants to get video of Sam - he thinks he'll progress
so quickly we might forget where he was. I can't imagine ever forgetting this, but it's so nice to see a doctor who
has faith in Sam. It's the first positive outlook we've gotten from the medical profession.
And me, I'm just waiting for the day Sam smiles.
November 10, 2004
Today was a very good day. We took Sam to see a neurologist in Palm Harbor (the town next
door) to discuss hyperbaric oxygen treatments. (Huh? What's HBOT?) It looks really promising, and we're anxious to get started on it. This doctor has people
flying in from all over the world to get this treatment, and we live five minutes away from his office. Dr. Spiegel also said something very encouraging. (Another first!) He said that Sam couldn't have
been deprived of oxygen for 20 minutes because even if he was without oxygen for only 6 or 7 minutes, he wouldn't be doing
this well. Well, one of the only things they've told us for sure was that he was without oxygen for close to 20 minutes;
that's why they didn't expect him to make it. So this is just more proof that he's a miracle. Clearly, God is
hearing all our prayers and HE is why Sam is not only here but defying all expectations.
As far as Sam goes, he's just getting over a cold, so we've needed to suction his throat
more frequently. But we know that's a temporary thing. He was perfectly happy in Dr. Spiegel's office, which has
NEVER happened - he usually hollers in the doctors' offices until we leave.
And I can't say as I blame him. I would too if I could get away with it.
October 28, 2004
On Sunday (10/24), Sam decided he'd had enough, and he pushed
his feeding tube out. It was out of his body completely; it was lying there in the crib next to him. Fortunately,
the doctor had told us it was bound to happen before we left the hospital, so we knew not to panic, and we took Sam and the
tube to the ER. Well, you know Sam is tough as nails.
This boy had people shoving and reshoving tubes into him, and he took it much better than we did. He cried, but he got
over it quickly. He even took a nap on my shoulder in between poking and prodding.
Through all of that, he didn't need suctioning. He's still
able to go 6-8 hours without suctioning, as long as he's peaceful. When I suction him, it's usually in the front
of his mouth instead of the back of his throat, which indicates that his gagger is pushing the gook FORWARD!
And something is happening with his eyes - I can see changes
in them every day. He doesn't seem to be focusing, but every time I go near him he raises his arms up to me. I'm
not sure where we are right now, but I know where we're going: God is healing him completely!
October 21, 2004
We had another miracle this week. My incision never healed properly, and the doctor had
told me recently I had some bizarro infection that people get in nursing homes (!!!) and that it would require surgery.
Well, when I went back to see him on Monday, it had healed, without medication and with my only getting about an hour or two
of sleep a night. The doctor actually used the word "miracle" to describe it!
October 14
Sam is now eleven weeks old. He still needs to be watched
all the time, to be sure he doesn't choke, but he can go for 6 to 8 hours without suctioning as long as he's calm. He
has very peaceful nights, breathing quietly and resting nicely. Normally, moms rest when their baby sleeps through the
night, but such is not our lot. We decided not to use the night nurses anymore, so I stay up with him through the night
and get naps in during the day when I can. (Thanks, Mom!)
We think he must be starting to swallow because he's able to
go for such long periods without the necessary but evil suction machine, so that's big and exciting stuff. And hang
on to your hats, kids: he has also started to gag sometimes! (Thanks, God!)
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