Final update on Tyler~staph infection.

* Helping Daddy build a fence around the garden.*

Last Monday Tyler had blood drawn so it could be tested for any residue of the staph infection. We waited anxiously this week, hoping to NOT hear from the Dr. If his Dr. would have called it would have meant more treatments/hospitalization because the infection would have been back!
Thankfully, no Dr. has called and we just returned from what was our LAST Dr. appointment. TYLER HAS OFFICIALLY BEEN DISCHARGED FROM MEDICAL CARE!!

His improvements will continue and be measured in weeks, rather then in days and hours. A full recovery, (internally) is expected 1-2 months from now. We are encouraged to build his system with probiotics and children's multi vitamins and rest. Our bodies are AMAZING and take great care of us most of the time. His body is working hard to recover and rebuild what was destroyed during this antibiotic treatments.

I see our normal little boy again.

The only remaining issue is the rash on his arm where the picc line was. This is not a concern to the Dr., but is annoying to Tyler as it heals. The hole where the picc line went in is closing nicely as well.

This morning at our visit with Dr. Furman, the infectious disease Dr., he asked Tyler, "how are you feeling?" "I'm feeling much better, I can run and jump again and nothing not even hurts!" he happily replied. "Oh that's wonderful news Tyler, do you like to eat food? What's your favorite food? If you could eat anything you wanted, all day long, what would it be??"

I held my breath.

"Lettuce."

My eyebrows rose with pleasure! Seriously? Lettuce!!'

Good boy Tyler, goooood boy!!

Tyler ended our time with one more question directed toward the Dr......"And did you know I had 11 shots?" Raising his hands up to the Dr. Furman's face, and flicking each finger toward the sky, 1,2,3,4,5,6,7,8,9,10, (two pointer fingers up) 11!!!!

"I thought I could, I thought I could, I thought I could."
~The Little Engine That Could~

Update on Tyler & his staph infection

The nurse had to come out twice this week to change Tyler's picc line dressing. He has a terrible rash and itches at it day and night. During the night he itches at it so much, that it comes loose. Last night he cried out because it was almost falling off and freaking him out, seeing this thing hanging loosely on his arm. "I don't like this picc line" he said, "I want it all done." I wrapped it as best I could for the night and waited for the nurse to come again today, for the 3rd time this week.



Early yesterday morning I got a call from the nurse. She said that his white blood cell count was very low and they were concerned with him getting an infection of any sort because he has nothing to fight off bacteria with. We were to stop administering antibiotics immediately and they would be coming by within the next few hours to REMOVE HIS PICC LINE!!!! I breathed again after she said that. Up until that moment I was holding my breath, just waiting for her to tell us some bad news. I was in total shock!!!! No more meds? No more picc line? Today?

Two thumbs up after I told Tyler his picc line will be removed!!

The nurse came by around 1:30 and we sat around the kitchen table, Tyler bravely sitting on my lap. He was scared because he thought it would "sting"(alcohol) and be a "pinch", (a shot). She removed the bandage and in less then 5 seconds it was out!! With a gentle tug a long, thin, tiny rope that looked like a single piece of spaghetti came out of my sons arm and was lying on my table! The spaghetti life line. He didn't even feel it coming out. So polar opposite to it's insertion....being sedated, one hour of intense waiting, watching him awaken, learning all the ropes about "our fourth child", (which it was nicknamed here in our home). Even as I type I can hardly believe that we don't have to remember to have the antibiotic syringe out of the refrigerator at least one hour before administering it. We don't have to keep an eye on the clock watching carefully for 12pm, 8pm, 4am! So glad that one of us doesn't have to get up at 4 am this morning for the line!

More then this I am grateful for the healing I am seeing in Tyler's body. Last week he said, "Look Mom, I can hop again" and began hopping around the living room. He ran around in the sunshine the other day as well.....RAN!! It was so wonderful to see, I just stood there, Paisley on my hip and smiled! By the end of the day he still has a slight limp, but that is rare and only if he has been on it too much.

The nurse measuring the line to make sure it all came out.....
another nerve-racking few seconds.
Thankfully, it's all there!!!

When I told Tyler that the picc line is coming out he was just as surprised! He wanted to throw out the medication. I got it out of the refrigerator and laid it on the counter. The next thing I knew he had it over by the trash can and was dumping it in!!! We went upstairs and dumped all those meds out too......JOY!!!

Since Tyler's white blood cell count is so low he is prone to infection of any kind. So the nurse said we must keep it close to home for the next few days. If he gets any kind of cold or any kind of minor sickness he would need to be hospitalized immediately. So, instead of going into the Creamery for ice cream, I went in and brought some ice cream cones out to the car. Thanks Shrish and Chase for going along with us....it was a special day for ALL of us!!

Tyler just said to me, "Mom, I love the picc line off."

Me too Tyler.

Me too.

"You have been my friend. That in itself is a tremendous thing.
I wove my webs for you because I liked you.
After all, what's a life, anyway? We're born, we live a little while, we die.
A spider's life can't help being something of a mess,
with all this trapping and eating flies.
By helping you, perhaps I was trying to lift up my life a trifle.
Heaven knows anyone's life can stand a little of that."

~E.B. White as Charlotte in"Charlotte's Web"~

Update on Tyler

breakfast and a bucket by the fire.
that nasty stomach bug passed thru our house right before Tyler got sick. We are SO GRATEFUL TO BE HOME AGAIN. I know I've said that so many times before, but it remains true. I look back on the past 2 weeks and realize I didn't know the strength that was lying dormant in me all this time. I am continually amazed at how, when called, a person can rise to current need/demand. I thought I was so busy/tired before all this happened; the hospital stay, the emotional roller coaster, the questions, the 24 hour medicine routine, etc. I realize now that those were "easy" days, relatively speaking. Oddly, I feel like I have more energy now then ever before. I guess because my focus is more singular. I am here to see that Tyler gets better, (as best I can). Motivation, no. Energy, yes. Two very separate things. Only today have I finally finished putting a weeks worth of laundry away. Tomorrow I will start deep cleaning my home. I love to deep clean. I went away last night for the first time in what felt like forever. Just me, to Target, for toilet paper and a couple other things.

Tyler's nurse, Amy, lives here in Strasburg so that is special to us. She comes by once a week to change his picc line dressing. NOT a fun thing and painful for him and for me to watch. But she was soooo kind and did a wonderful job. It seemed 80 times worse in the hospital when they did it. I guess because everything was so heightened at that time.

His medicine routine is just that....a routine. We feel like we have it down pretty well so far. It's melting into the rest of my day/night, but I do feel myself thinking, "don't forget to do it, don't forget to do it."

Tyler is still limping. The Doctors said it will be some time before the antibiotics do their work and bring complete healing to his muscles. They said that oftentimes children his age will favor their leg because they remember previous pain, (even after it is actually better). Tonight though he started talking about his OTHER hip hurting...what the heck? I'm calling the Doctor tomorrow morning.

The antibiotics are very strong, causing diarrhea in him. I feel so badly for him. He had three accidents yesterday and was very upset about it, understandably so. The nurse said to give him more yogurt which will cause the good bacteria to help form more regular stool. (Thank you for taking the time to read about my sons bowels)!!!!!

He said to me yesterday, "my body hurts Mom." Oh, my heart broke for him. I had to fight back the tears right then and there.

His coloring is still way off too, just a pale, transparent look to him. Again, the nurse said this morning that this is "normal" when on these strong meds. Oh, I'm so ready to have my healthy boy back! I see the end in sight and recognize that there are MANY who do not. Many, many parents are dealing with terminal illnesses in their babies, their precious toddlers or their school-aged children. My heart has been filled with compassion like NEVER before.

Tyler wakes up at least once a night crying of pain in his hip/leg area. But we have learned that if we give him some Motrin right before bed, this usually curtails that happening. He's not as hungry as I'm use too, but that also is a side effect of the meds.

Tonight when we were saying our good-night prayers I told him how excited I am when he will feel all better and we will run all around the yard together and jump high and climb trees. He just smiled. He has amazed us with his bravery, strength, patience and optimism throughout this whole journey.

We thank our God for healing him COMPLETELY and giving us the STRENGTH WE NEED FOR TODAY.....to encourage him and help him toward wholeness!

"We hold that man is never so near grace
as when he begins to feel he can do nothing at all."

~C.H. Spurgeon~
High Doctrine, June 3, 1860.

Tyler's Medicine Routine

Okay, here's the thing, if I'm going to do something on a regular basis I would like for it to be:

a.) fun

b.) cute

c. ) fun and cute at the same time.

So, since these meds will be in our home IN ABUNDANCE for the next 6 weeks and they will be used 3 TIMES each day, I will make them easily accessible and fun to look at it:

we have here, from left to right: pink bucket=saline syringes, blue flashlight for 4 am meds, orange bowl full of alcohol swabs, fresh red tulips, green bucket=heparin syringes.

wash hands thoroughly.
15 seconds of alcohol on entrance site.

adequate distraction for 4 year old
administer first syringe filled with saline to clear picc line.

repeat alcohol swab for another 15 seconds.

make sure other children are accounted for.
preferably in place with food/entertainment/both.Administer antibiotics for 5 minutes. Squirt. Wait one minute. Squirt. Wait one minute, etc. Yet another alcohol swab for 15 seconds.

check on children again.
smile when little brother is caring for little sister.

Administer another syringe full of saline to wash the picc line clean of all antibiotics. you guessed it, another alcohol swab.

fill picc line with heparin to ensure no blood clots form in the line until the next round.

laugh at clown.

discard trash, (or wash a few out and use as bath toys).
Repeat 3 times a day, every 8 hours.

"Poisons and medicine are oftentimes
the same substance
given with different intents."
~Peter Mere Latham

p.s. tomorrow is a little boys birthday that i love very much.

A beautiful, beautiful day!!

My brother-in-law sent me this kind email today, along with this picture of Tyler.
"Jake and Janelle, Know that Tyler will one day soon climb again, free from any pain,
hurt, or stiffness. And for the rest of your life on this earth, you too will will watch him and be amazed... I just know it."
*this picture was taken last Summer at a photo shoot for my brother-in-laws business*

I cried when I saw the picture and you want to know why?
Because Tyler is wearing THAT SAME OUTFIT today!!!!
Isn't that AMAZING??? a little kiss, right on the mouth of my soul, from heaven. world watching at our favorite "escape",
the walkway.

silly, silly boy!

trading places! still limping, but it's not stopping him!

a bunch of crazy eggs!

"Almost time to go back to tidmoth station," Gordon says.
Mommy's version: "Almost time to go back HOME!"

The playroom.

Around 3pm the Dr. suddenly announced to us that we can leave this evening!!
To say we were EXCITED would be an understatement!! They felt that Tyler showed substantial improvement in the last 24 hours and his blood cultures continued to show negative bacterial growth. I was shocked at the sudden change of plans and a little nervous about learning the ropes at home. But I didn't start thinking about it at that time, I just ENJOYED THE MOMENT of anticipated freedom!!

Packing up ALL our STUFF!! So many special gifts!

JOY! JOY! JOY! (*my poor boy looks sooooo tired and worn out)

Our first stop: Free Rita's Ice Day!

Buddy!

can't you just taste it??

We drove in the lane, welcomed with TONS of balloons and signs!!!
Thanks Aunt Shrish!!

You'll never believe the FIRST thing Tyler did when he got out of the truck.
He said hello to Luke and Paisley and then promptly went to the dirt pile, picked up his yellow bucket and spoon and started digging: "I missed the dirt Mom, I missed the outside!!"
In absolutely no time at all, the brothers were back to their regular business.
Tyler came walking into the kitchen with a giant worm on a spoon. I told him to take that nasty thing outta here and he said,
"I put a big hard brick on it's head and I deaded it."
And then he threw it in the trashcan!

Leaping for JOY into his bed. He laid there and kicked and rolled and smiled like a little puppy.

This is what was delivered to us this evening! A 5 day supply of meds.
Now onto another adventure!

We REJOICE in our complete home!!

"Where thou art - that - is Home."
~Emily Dickinson~