H–is for HIE

     In a few months our first granddaughter will reach her second birthday, which will be a great day of celebration, as was her first birthday.  Her actual day of birth, those many months ago, was a time that should also have been full of smiles and joy, but instead filled with worries and questions.  She had HIE–hypoxic ischemic encephalopathy. Hypoxic–lack of oxygen. Ischemic–restricting blood flow. Encephalopathy–affecting the brain. Simply put–oxygen deprivation that affects the brain at birth.

    The medical staff took immediate action, but it still took hours to stabilize, make preparations, and transport her to the NICU in the larger city. They couldn’t use the life-flight helicopter because of there being such bad thunderstorms going on that night. Instead she was taken by ambulance, with one of the first actions taken being to cool her body, which slowed blood flow to prevent further brain damage. It was a month later that she was able to go home. Her parents quickly learned and gave the day by day care needed, one of the biggest of which was getting used to feeding her via a gastronomy tube. They were fast learners, and Samantha thrives physically. In the next photo you can see her "button" for feeding.

Samantha with her beloved Grampa

     One of the HIE effects was that she was never able to cry. One doesn't usually think of a crying baby as a blessing, but it truly is. How thrilled we were when Samantha first started making some vocalizations!

Samantha having a meal via tube with the help of the orange feeding pump.

     Because of a “default mode” of mostly keeping her head turned to the left (which she still does), her head was getting flat on that side.  So, until her skull fused, she had several months of wearing a helmet, which did its reshaping job.

Helmet "graduation day"

     Samantha has a variety of specialists and therapists who help with different developmental aspects. Even though she has always received her main nutrition through a gastronomy tube, she is also undergoing therapy to strengthen her face and mouth muscles to be able to eat by mouth. A wonderful by-product is that those same stronger muscles help her be able to vocalize more, and to smile. It’s such a blessing to see her eyes light up during an interaction; and now to see an occasional added smile just makes my heart rejoice!

     One always expects and hopes the best with a new baby. And you know, that’s just what the family got with Samantha. No, she isn’t developing at a “normal” rate, but she is making progress and developing at her own normal rate, just as God knew she would.  She reminds us all not to take anything for granted, and is such a sweet joy!

The biggest smile I've seen–looking forward to many more!

     (If you want to know more about HIE, you can read here. Our friend Kacy writes about her own daughter here and here. Of course each child affected by HIE has different diagnoses, but some of Hudsyn’s–the GERD, the gastronomy tube–are similar to those of Samantha.)    

In Thankfulness

(Welcome to any visitors from sweet Linny's "A Place Called Simplicity".  This is my first time linking a post, and I sure didn't mean to use the generic linky image, but guess that didn't stop you! Would love to have you come visit again sometime!)


Somewhat over a year ago (October 30, 2012), I had surgery to remove my thyroid, which as suspected, did have a cancerous growth on it.  The surgery went very well, with no follow-up chemo or radiation needed. I only need to take a thyroid pill every day the rest of my life.  I can do that!

After the surgery, praise the Lord, I could talk! (but not loudly)

I could read orally! (but not for long, or with the usual inflection)

After several months I could sing! (but not with a reliable sound/range)

Yes, I was grateful for the talking, reading, and singing ability that was there.  But... things just weren't like they were before the surgery.  They weren't "normal" and the feeling of a lump in my throat remained, even though there was nothing physically wrong with my vocal cords.  It was 
F R U S T R A T I N G
for a long time!

Fast forward.
...
...
...

Last evening the annual Community Christmas cantata was presented after nine weeks of practice.  It was such a BLESSING to be able to participate!

I will sing to the LORD as long as I live; I will sing praise to my God while I have being.
--Psalm 104:33

God is good!

What to Say?

Official diagnosis--it was a malignant tumor on B's kidney. Notice the past tense. We are trusting that the freezing procedure (cryoablation) completely obliterated the cancer cells. No further treatment is expected, but follow-up will include yearly scans.
He was in the hospital Tuesday-Saturday, glad to be home. Now to get his INR (blood thickness/thinness) regulated, incisions healed, energy back, keep him from lifting anything too heavy, and then to keep him off the tractor for as long as he's supposed to!

Thank you for all prayers past and continued.

Trusting and a Blessing

Today B and I head to the hospital in Lincoln again, but at least this time it's a planned trip. The time has finally come to zap--or freeze, actually--the tumor perched on the back side of his kidney. Of course they'll also biopsy a sample of the offensive little thing. We're completely trusting that regardless of what it is, cancer or not, the procedure will get rid of all the growth that shouldn't be there.

Another "offensive little thing" showed up in the form of an extra bump at the top of his nose, just above the eyepad of his glasses. The blessing is that since B was already prepping for today's surgery (getting off his blood thinner), our local surgeon was able to excise the nodule in his office last Thursday. The lab report came back that yes, it was a malignant skin cancer. We and the doctor are confident that he removed it all. The area is healing up nicely, but of course there was bruising, so it looks like he was in a fight!

Your prayers are appreciated today and in the days to follow as he heals.

Our trust is in the Lord.

A Puzzling Situation

Remember the picture at the end of this post last summer?

My oldest brother, P, asked if he could get a copy of it.
Oh, he likes my photo. Sure!

At Christmas, I received a lovely silver box from him, full of odd-shaped cardboard pieces. He'd had the photo made into a puzzle for me. Just for the record, I did put it together!


The infection wound on B's leg finally closed up! Hoping for most of April to be without any medical appointments, until pre-op stuff at the end of the month. He's scheduled for May 5 surgery to biopsy and freeze the tumor on his kidney.

I'm back to subbing, after taking off from it for the past two months. Already had 3 days last week, and have 3 scheduled for next week.

Our Lenten journey is drawing to a close. Our pastor's weekly Lenten service messages have been based on the hymn, "O Sacred Head, Now Wounded."

O sacred Head, now wounded,
With grief and shame weighed down,
Now scornfully surrounded
With thorns, thine only crown;
O sacred Head, what glory,
What bliss till now was thine!
Yet, though despised and gory,
I joy to call thee mine.

How art thou pale with anguish,
with sore abuse and scorn;
How does thy visage languish,
Which once was bright as morn!
Thy grief and bitter passion
were all for sinners' gain;
Mine, mine was the transgression,
But thine the deadly pain.

What language shall I borrow
To thank thee, dearest friend,
for this thy dying sorrow,
Thy pity without end?
O make me thine forever,
And should I fainting be,
Lord, let me never, never
Outlive my love to thee.

Be near when I am dying
Oh show thy Cross to me!
And, for my succor flying,
Come, Lord, to set me free.
These eyes, new faith receiving,
From thee shall never move;
For he who dies believing
Dies safely in thy love.

He's Lost It

Yep, B's lost it! But that's a good thing. What he doesn't have anymore is the wound V.A.C. They took it off yesterday, and today the UPS guy stopped by to take it back to Texas! The sore isn't completely healed, but is almost there and is so much better than when we started. Now I "get" to play nurse for the next week, changing the dressing as needed.

I think we had record high temps for March 5 here. It was in the 80s! Unbelievable. B planted peas in our garden today.

Progress!

We're seeing some progress! We've gone in every other day since last Friday to have the dressing for the wound vac on B's thigh changed, and each time the wound is noticeably, measurably smaller! It's certainly not all closed up yet, but it sure seems like we're headed in the right direction now.

Point of information: vac on the machine is actually V.A.C., which stands for "vacuum assisted closure". We sure are grateful that God gave somebody the brains to figure out that this nifty little machine would be just the thing to invent!

Man Purse?

The infection (the redness around a center area) on B's thigh is gone, but.... the center area itself, which had been just a darker area, actually got larger and necrotized (died off) so that it had to be surgically debrided twice this past week. After the last time, they put a "wound vac" on it. This machine totally seals the area, pulls out "stuff" that shouldn't stay there, helps with circulation, and just generally promotes healing of the wound. It stays on continuously, runs very quietly, and is in a portable bag. Imagine B. with a "man purse"! Maybe I can add a picture later. (added Feb. 12) We're told to expect some rapid improvement, though we'll still just take one day at a time.

As to what let the original infection get started, we will probably never know. It could have been a tiny scratch, a bug bite, a superficial blood clot, a tiny ruptured vessel, even an ingrown hair! B's being on Coumadin seems to be a possible factor in how things progressed to where they are now, but again, nothing is really certain right now.

Thank you for your continued prayers. They are much appreciated!

You Just Never Know

You just never know what the day will bring.

On Wednesday, the 21st, I went to school for a short day of substitute teaching. Soon after getting home, B showed me a small dark area with some redness around it on his thigh, plus he was having terrible chills. We're always cautious about the possibility of blood clots (he's been on coumadin since a clot in 2001), so we called and went to the clinic. The dark area kind of looked like a bruise. Well, our doctor had him admitted to our local hospital, put him on an antibiotic for what seemed to be a virus of some kind, and did a CT scan of his lungs, just to be certain no clot had traveled there. None had!

It became obvious that the area on his leg was an infection, and both the center area and the redness around it continued to grow, despite a change in antibiotics. So, on Sunday he was transferred (M and I drove him) to Lincoln to be treated by an infections specialist. They changed him to yet another antibiotic, and this one (along with tons of prayers from friends and family) seems to be taking care of it. He was able to come home the middle of this week, with a 10-day, 4 times a day, prescription.

The infection was deemed “cellulitis.” We definitely need those prayers to continue so that it gets all cleared up.

Because..... needing to do the CT scan of his lungs turned out to be a blessing. The lungs were fine, but part of his kidneys were also in the picture, and our doctor spotted a small, most likely cancerous, tumor on one of them. Otherwise it likely would not have been found until it was larger and causing trouble. As it is, B’s urologist was able to get a full scan done while he was up at Lincoln. The tumor is relatively small, only one, and appears to be contained. An appointment is scheduled in a couple of weeks, once this cellulitis business should be done, when we’ll talk with him more and see what course of action will be taken.

You just never know.