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Tuesday, March 16, 2010

Our Journey with Tyler this past weekend.

Hello my dear Blogger Friends! It's been too long and boy, has it been a whirlwind few days! I think the best and least time consuming way for me to inform you what's been happening is to cut and paste the emails I've been sending friends and family since Tyler's first visit to the ER:


EMAIL #1: Friday, March 12th, 2010
Hello Dear Friends, it's been a LONG day.


On Wednesday afternoon I put Tyler down for a nap, after a play date in the morning. Everything was normal and he had been running around and being himself. When he woke up he had hip pain, a slight limp because of the pain and a high fever.

It lasted 24 hours after which I I took him to the Dr. because things weren't getting any better. He was admitted to the ER immediately. They were very concerned w/ the limited mobility he had with his leg/hip and the high fever. A dangerous combo for bacterial infection. Thankfully Jake was home so he and I and Tyler went right into Lancaster General Hospital.
My Mom was here with Luke and Paisley.


They did some x-rays and several ultrasounds, drew blood and admitted us. All has come back clear except for high levels of infection in the blood. (a certain count was at 74, when it should be at 3 for a child his age)!! They wanted to do an MRI which would require full sedation.


Everything happened so fast and we were concerned things were getting too serious, too fast. We called our family Dr. (Strasburg Family Health, right across the street from our home) for some advice. He is the one that admitted us to begin with, for quick blood work. I mean, we were sent to have rapid blood work done, not have a full admittance and MRI w/ sedation! So he, (Dr. Lupold) and Dr. Cook have been in communication and feel that it is best to give him the weekend to recover on his own.


We were sent home just an hour ago w/ heavy doses of Motrin for the next few days. Because they were not able to get an MRI done today we would have spent the night in vain, just waiting. They also were not able to agree as to whether it was truly necessary for Tyler to have an MRI. So, they discharged us and said if he is not better, (no fever and can walk again) by Monday he will need to be admitted to a children's hospital for further assessment.

I will say that he is putting SOME weight on his leg tonight for which we are grateful. He also lifted his leg into a position that he was not able to do before. Yesterday I was literally carrying him to the bathroom and back again. We all need a good nights sleep and like I said, we are grateful to be home.

We are praying that this infection would clear up "on it's own" by Monday. We have an appointment on Monday to check up on the progress of his healing.



Thank you for caring my dear friends.
Thanks!!
xoxo, Janelle


EMAIL #2: Sunday night, March 14th, 2010

Hello Family and Friends, this will be short as I'm running on about 2 hours of sleep since Saturday morning.


As mentioned previously, we were discharged from Lancaster General on Friday night.
We came home and Tyler had a relatively good day at home. Ate well, played, Grandpa came over and they wrestled as well as he could w/ his limp. However he was still running a fever.
Saturday night we received a call from our family Dr. that they have indeed found a bacterial growth of staph in his one culture.

They sent us to Hershey Medical immediately, to be admitted to the ER and have an emergency MRI.

Tyler was sedated and the MRI was done around 1am Sunday morning. The results came back Sunday morning at 7am and no infection was found in his bone/joints. He was looking/feeling well and his limp was much better. And so we were discharged and told to wait for the blood culture results.

As of now there is no permanent damage to his leg/joint/hip, but it still makes us so uneasy seeing him limp around and sometimes even crawl. We are trusting there will be more information that presents itself from the results of the blood tests took last night @ Hershey, (they take 2 days to harvest....ugh! that sounds so nasty).

Dear Tyler has been such a trooper. Hardly crying or fussing except when needles were involved and when they put the mask over his mouth to sedate him. Gratefully, we were allowed to stay with him until he was asleep. What a terrible, terrible feeling watching your child go from screaming to eyes rolling back and going limp!
Tyler is especially thankful to his cousin Sami for letting him borrow her "TS", (Nintendo DS). It was a wonderful and much needed distraction for him.


We pray peace and rest over ALL of us tonight, we need it....


Love from all, Janelle



EMAIL #3: Monday, March 15th, 2010
Hello again from Lancaster General Hospital.

Last night was rough again. Fever spiking and continued hip pain.
We called our Dr. again who sent out an emergency prescription to a local pharmacy for an oral antibiotics. Jake went to Wiley's to pick it up at 9pm and we had it in Tyler by 9:30pm.
The Dr. said we could admit him again Sunday night, but it would take time before antibiotics would be administered, so he thought it would be just as safe to administer them at home and go see him in the morning.

So, this morning we packed up and went to our family Dr. The blood work from both LGH and Hershey Medical have both shown positive for an infection in his blood. They had to admit him to our local hospital immediately.

He will be here for 5-7 days of round the clock antibiotics.

The question that still remains is WHERE is this infection stemming from? They do not know if his hip pain/limp is coming from the infection or if the infection is causing the pain. This is the reason for the extended stay:

1.) adequate time for the antibiotics to kill all the bacteria in his blood stream.

2.) figure out the source of infection.

In the meantime, we are here and in good spirits. Tyler will start antibiotics in an hour or so and then we will settle into our new home away from home! I told Jake I'm going to "Janellelify" this place....quotes and color and happy vibes! I told him I'm going to take a before picture of this room so we can see how love changes the look of any space given to you! :-) I already wrote on the little white board: "A happy heart makes a cheerful face" and it sure does.

Tyler is doing well, he's been sleeping the past hour and we're grateful for that since last night was rough for him. Jake and I plan to take turns spending the night here. The other one being at home with Luke and Paisley. This routine will be our new normal for a bit, with the hope and prayer that this crap will be knocked out by Saturday!

Thank God with us that there is no infection in his joint which means he will walk normally again. Pray that the little enemies in his body would be put to FLIGHT! Jake and I were talking about how similar this "battle" is to the spiritual battles we face. Tyler's body is fighting for life, (not as in the opposite of death, but just LIFE, as in free from all this bacteria).

This bacteria is trying to take over, but Something is intervening....the Dr's. the antibiotics, the touch of God. We are putting GOOD things in him via an IV to help him fight off the bacteria. Now, I just wish I had an IV of peace, love, joy, grace, gentleness, patience, kindness, self-control and worship that followed me around and dripped into me day and night!! But, it's up to me to go find and seek that on my own!

Jake and I are dealing with today....that's all we're called to do. We cannot go into tomorrow because that will take the emotional/physical energy that is needed for the NOW. Thank you for caring for us and turning your thoughts and prayers toward us. We are blessed with so many wonderful, beautiful and unique patches sown next to us in this quilt of life!! Okay, that was sappy....but true!! :-)


Love from room 3813, Jake, Janelle & Tyler





EMAIL #4: Tuesday morning, March 16th, 2010
Hi Everyone, the sun is shining in our room and it is peaceful here. I brought Tyler's favorite CD from home and the song is singing right now, "He sings to his beloved even as we sleep." and this is so true. There is a peace here in the room and Tyler is resting.



Last night was a very, very difficult night. No one was able to get an iv started because of his tiny veins. They tried 5 times much to his dismay, (and ours). It is torture to watch your children suffer in front of you, crying at you to make it stop and yet knowing it is the best thing for them in the end. So, at 10pm they decided to give him a double shot of antibiotics into his left thigh, via deep muscle shots because he NEEDED to get started one way or the other.



He slept soundly after having quite the day. I went home to be with Luke and Paisley overnight. I showered and relaxed in the hot tub for a bit, which was refreshing for me. The children slept well, as did I. Jake stayed in here with Tyler and they too were restored in their sleep.

I arrived this morning at 9 am just in time for Tyler to be given a picc line. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and moved until the tip terminates in a large vein in the chest near the heart to obtain intravenous access. And so, FINALLY he is getting the antibiotics started.

Both blood cultures, (from LGH & Hershey) have shown positive for a staph infection. So, his blood is infected with a bacteria called staph-Staphylococcus aureus. However, this situation is very rare because Tyler has not had an open wound or any other injury, which is normally how staph enters the body. The Dr. has seen this before, but he said it is rare with the persistent fever and hip pain.



We will watch what these antibiotics do in the next 24 hours and pray that the fever ends and the bacteria begins to be overcome. The cause for the reason staph got into him is still unknown and perplexing.



I am comfortable here and enjoying the "down time" and the individual focus I am able to give my son. Anyone with more then one child knows the rarity of prolonged, individual attention. It is a special treat to make Tyler feel extra loved and cherished.


Thank you to everyone who has been calling/emailing/texting/bringing coffee, gifts and brown bags filled with goodies/caring for Luke and Paisley/praying/crying/thinking about us. We've always been "on the other side" and often heard about this "peace" that is with you in the midst of difficult times.



We now know the taste.


Jake is at home now taking care of some business and spending time with Luke and Paisley. He will bring the children in later tonight as they are all missing each other. Tonight I will stay here with Tyler. We'll take turns spending the night here so as to maintain some sort of normalcy for Luke and Paisley. We expect to be here until Sunday.



Enjoy your day wherever you are! It's a beautiful one.


Love, Janelle




EMAIL #5: Tuesday night, March 16th, 2010
Another long day, but "fruitful."


Some "good" news, if you can call it that, came from the infectious disease Dr. tonight. It looks like that staph bacteria that has infected Tyler's blood is treatable with these antibiotics. The blood tests today are still showing "growth" so he will need to stay in the hospital until these tests come back "negative" for growth. They "like to pop their heads up" pretty fast so we can see the growth/non-growth in the same day. If you've never heard an infectious disease Dr. talk about bacteria, it's borderline hilarious. It's almost as if he's talking about his little friends or something.


When this bacteria stops growing we will be sent home for an additional 6 week time table of treatment at home. He talked about this strand of staph and how it likes "stick" to surfaces in bodies, like heart walls and bone endings so this is the reason for the intense/long treatment. He wants to insure that "everyone" is destroyed, thus the 6 week time table. Antibiotics will be administered at home several times each day around the clock.


I can't really go there right now, imagining everyday life at home while administering medicine, BUT, we aren't there yet so I'll take the advice of a very wise woman that I've known since birth who said: "JUST DO TODAY, YOU CAN DO TODAY".


The PICC line will remain in his body until the end of that 6 week period. And so, it was a blessing in deep disguise that Tyler went through what he did last night....not being able to find a vein. This PICC line will make it possible for him to receive treatment at home. Another interesting and oddly relieving fact is that up to 80% of the time the reason for this sort of infection is never found out, namely with the young and the elderly.

Tyler is in good spirits and says each day, "I'll be all better in the morning." He's got such a GREAT attitude and I'm learning from him and trying my best to pour down into him a positive, thankful heart. We went outside today as a family and had wheelchair races down the sidewalk along James Street!!!


Oh the day in which he will be taken home, (WHAT AN AWESOME DAY THAT WILL BE~~with a stop at Rita's on the way home for sure)!!!


Good night all,
Janelle


"There is in every woman's heart
a spark of heavenly fire which lies dormant
in the broad daylight of prosperity,
but which kindles up and beams and blazes
in the dark hour of adversity
."
~Washington Irving~

12 comments:

Shar said...

So good to see your lovely face this morning...I'll be in again another morning this week! I love you and you all are in my thoughts and prayers always!

Mary June Miller said...

What a journey your little family is on!! I'm so glad you posted all of this! I'm praying for you all! Love you! Mj

Mindi Bruckhart said...

It was nice to read your updates. I have been thinking of you so much!! My prayers are with you all. Love, Mindi

AmyK said...

Thanks for posting, Janelle. May peace, strength, joy and healing be with each of you (and esp. Tyler) for everyday that is TODAY.

Amy

Michelle said...

Thanks for the updates :) We love you all, and will be praying for strength, wisdom, patience, rest {emotional/physical} and continued happy hearts.

Oh, and your comment, "We are blessed with so many wonderful, beautiful and unique patches sown next to us in this quilt of life!! Okay, that was sappy....but true!! " was very dear and lovely to read. :)

Love to all,
Michelle {& Jonathan}

Mark and Heather said...

Hey Janelle..I passed your house and thought of you yesterday. You kept coming to my mind after that and now I know why. I will be praying for you. As a mom...i know that has to be such a scary time but I was so blessed and encouraged to hear the peace that came through your writing. May God of peace continue to guard your hearts and minds and may Tyler be healed in Jesus name. Blessings,
heather

Kara Stoltzfus said...

still praying and believing with you for continued healing. seeing those pictures and the background of the hospital brings back many memories of when madelyn was admitted into LGH at one year old, for serious broncihilitis.
will continue to pray. may you feel god's peace, rest & strength.
you are a wonderful women janelle. may you & yours be blessed.

clarita yoder said...

Wow, Janelle, this has been a huge journey for your little family! That is so scary as a parent to see your child so sick and not know why! Prayers are being lifted for you all, and much grace and peace to flood your days. I can imagine it's hard to have so much abnormality with such small children, but may the Lord "fill in the cracks" when you and Jake are exhausted and tired and busy. May His big strong arms carry you these days, and I hope your precious Tyler regains health very speedily!
Love love, clarita

Sarah Gingrich said...

Oh Janelle...(hug). I identify with your experience. May the peace of Christ dwell richly with you, may Tyler be completely healed and back to running around like every little boy loves to. God be with you!

Jena said...

so. much. loves.

Anonymous said...

So sorry to learn of Tyler's illness. Praying for return to health for him and grace for you and Jake during the journey.
ruthie

Anonymous said...

You and your family are in my prayers. May you find strength in the God who created us. ~Naomi Glick