Friday, October 25, 2013

Tick bite, to treat or not to treat.....

John 14:13-14 Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it

The updates on our little man are getting longer as we try and figure this illness out, I figured this was the best way to put it all out there for all our prayer warriors!
Last Wednesday was the first day of the high fevers for Jett, over 104 presumptively. Since then we had ONE amazing ER doc tell us that he really believed Jett has Tick Borne illness, probably Erlichiosis (see previous blog). He told us that because he practiced medicine in Missouri he was very familiar with Tick illness and he advised us that we would probably be in the hospital at least 72 hours to get the IV doxycycline in quickly. As most of you know, we got discharged the next day because the infectious disease hospitalist doctor (the one who only see's hospital patients with no local MD) informed us, while smirking, "I do not believe it's not Tick fever you can go home and wait it out. Its probably viral and will resolve on its own but we will send you with a few days of oral antibiotic and follow up with his Doctor tomorrow." Jett was so much better from ONE dose of the doxycycline that I was convinced maybe it was coincidence, I mean surely an antibiotic would not make that big of a difference with one dose?
We came home, saw our Primary care doc who also was not completely convinced it was tick illness. His symptoms were getting worse, body aches, Joint pain with stiffness, night sweats, fever that would go up really fast, fatigue. She  needed blood from Jett and he just wasn't giving it. He was stuck about 4 times with zero success. From there we were sent to Arkansas Children's to the Infectious disease doc's there and the IV team in hopes that they would be able to get his blood drawn.
We were blessed in that they were able to get the blood and with that we were able to rule out one of our biggest fears, they ruled out Systemic Onset Juvenile Rheumatoid Arthritis. We were so afraid that Jett was about to walk to same road Jackson walked (or limped) when he was 2. With that ruled out (by Jacksons old rheumatologist who we trust fully), we wait for the other tests that can take a while. Tests like : cat scratch fever, staph, strep, mono. You name it.
The infectious disease doctor at Childrens told us that he did not understand why the other hospital ran all the tick tests because obviously we do NOT have Lyme or erlichiosis in Arkansas. I could not believe he said that! I had heard it was hard to get a diagnosis in Arkansas for tick illness but this incredibly intelligent MD just told me there is no way it's tick related. I work for the Arkansas Health Department, I get the reports from the CDC of "suspect Lyme" and "suspect Rocky mountain spotted fever". I know there are tick illness, not only in Arkansas, but in Cross county! I did not say a word, after all, he certainly is more knowledgeable than I am. I was not about to question him. He sent us home with no meds and that night (Wednesday, 1 week after it started) Jett got worse. He started twitching or making jerky movements, and his fevers were going back up and pushing 103 every 3 hours. He was sweating buckets and white as paper. I took a picture of him and texted it to his Primary doc who called me immediately. I told her that my gut was telling me it's all tick related and I wanted the doxycycline now because he is obviously getting more sick by the day. I pointed out that the only time his fever has come down was while he was in the hospital on the IV doxy. She promised to call me back after she called Little Rock and updated them on his condition (Infectious disease doc's). About an hour later we had the prescription called in and in his little body. They said they were only giving us a few days while we wait for the other tests. I'm sure when I send today's pic of him to his Doctor she will change her mind.
He feels so much better and has had zero fever since 2 hours after his first dose of doxycycline, he has now had 2 doses. I have full faith in Jett's doctors, but I have to follow my God given Mothers intuition. If its not Erlichiosis or Lyme then at least we were on the side of caution being that there was in fact a tick on him and he has every single tick fever symptom!
Thanks so much for all the prayers, I know they are sustaining us. Jett and I are worn out but he is running and playing today, while I obviously don't wish him to have tick anything, I am thankful for a Primary Care doctor who listens and treats the child (and the mom) and not lab work, after all labs are just numbers on a paper. The patient needs to be looked at as a whole picture not 10 min in an office.
Keep praying my friends, its working. We love you !

This how fast he gets sick. looks ok in first pic, 2 hours later 103.
          This is today after 2 doses of the doxy :)

Saturday, October 19, 2013

Storm number 456786, whose counting?

Ps 86:7 In the day of my trouble I will call upon You: for You will answer me.

I know some people who have had minor storms if any in their lifetime. Others, like my family, seem to have our share plus theirs, I suppose it's all in how you look at it. It obviously doesn't make sense that some of us go through more, um, obstacles than others, but in reality what does make sense? It's my opinion that this life is just harder on some people than others. I will choose to keep looking up in this current storm and keep praying. Who knows, maybe this will be our last storm (I had to stop typing and cross my fingers on that one).

On Wednesday October 16th at church, I noticed Jett was not feeling well at dinner. He just didn't eat and was very fussy, not his normal cheerful smiling self. I didn't notice a fever when I felt him so I went on to my class and sent him to he nursery. At about 7:30 I went to pick him up and noticed he was warm with fever and that's where it went really bad really fast. As we were heading down the hall to check his temperature he began having a seizure. As I watched him turn blue  I could barely hear people around me, all I knew was that there was a pediatric nurse with me and I felt that he was going to be okay with her there. I knew as a nurse myself that we were helpless to the seizure but I also knew if he did not breathe soon something would have to be done, I was praying for God to stop the seizure and show me what was wrong with my baby. The nurse, Jill, was with him was at his head and noticed how hot he was, you could fry and egg on my baby and his temp went up fast, really fast. Jill happens to work in the ER at Lebonheur Childrens Hospital. She never stopped or hesitated she just led us to the car where she called ahead and we headed strait to and through the ER. She did not have to go with us, but she did and I don't think she ever entertained another option. 
Jett was out of it most of the drive to the hospital but he did finally start responding to his name about halfway there. I prayed non stop on that drive to the hospital, Lord guide the doctors, Lord show me what to do, Lord help me remain calm for Jett. I was scared but strangely calm at the same time. The Lord was faithful and he may not have calmed the storm but he calmed his child.
The doctor was wonderful, he ran all the tests you would expect for a child with high fever and no other symptoms, (besides just looking and acting "sick" the last few weeks). When nothing to abnormal showed on the Labs and Jett was not looking better, the decision was about to be made to do a spinal tap to test for meningitis. While we were waiting again, I was strangely calm. One of our friends, Lacey, says "oh look there's a little dirt behind Jett's that's not dirt, it must be a mole." No one really replied or thought much of it. A few minutes passed and again Lacey said "Ronnie, have you noticed Jett has a mole behind his ear?" again, I didn't get up, so another friend went and investigated. "um, that's not a mole, is that a TICK?!" that got a response, yep its a tick. Imbedded behind his ear, so tiny I never saw it and may never have seen it. You see how God was working here? Pushing Lacey to keep seeing that spot behind Jett's ear, pressing her to keep bringing it up even though she had no idea it was a tick. Finding that tick changed everything. The doctor removed the tick and the whole game was changed. We were admitted and started on treatment for tick borne illness, we are still not sure which one it is.
If that tick had not been found, he would have had a spinal tap that showed nothing. We probably would have been sent home on no meds and been back again in a few days, repeat, repeat, repeat. As they were trying desperately to get blood from Jett and he was screaming after the 3rd stick I was praying again, "Lord why do you keep testing me? I will not loose my faith, please stop testing me." I lay my head on Jett's chest and the picture that came to my mind was awesome. Angels covering us with their wings. I want to share a quote from a Christian fiction book that will explain what I saw in my mind : "She lay nearby, facedown in the dirt, weeping, physically exhausted and emotionally spent. Guilo (an angel) sat beside her, his wings spread over her, stroking her head and speaking soothing words to her soul. Tal (another angel) approached quietly, knelt beside them, and spread his wings high and wide, joining Guilo's wings to form a canopy to keep out the world for a while. "~Piercing the Darkness by Frank E. Peretti. (wonderful book!)
They eventually got the blood, but not without a struggle from his little body not wanting to cooperate.
As we lay in his hospital room at 3am I felt God speak loudly to my heart, letting me know that He was not testing me. That he did not place illness in the world, when sin entered so did illness. He did not "make" Jett ill and as similar as all this was to Jackson fighting to be diagnosed with Juvenile Rheumatoid Arthritis, it is not the same. My faith is 10 fold now and I now SEE that God is good all the time He doesn't give us illness to hurt us. That's just part of being human, getting sick.  He also showed me flashes of the whole night: Jill (our off duty personal super nurse) being there when the seizure hit, Cassie to take my JC home, Josh making it to the church in record time to drive us, Libby able to intercede and keep everyone updated and start a prayer chain allowing us to focus on Jett. Lacey finding the tick, Cissy showing up with Jett's favorite blankie. Matt being there to support Josh, the doctor being very knowledgable about tick's. He showed me that yet again , the storm raged on but he sent many, many life boats. He put everyone where they were supposed to be and for that Jett was sent home the next day with the medication that he needed. We were making progress and we were covered under a HUGE blanket of prayer.
We are still waiting for the Lab cultures to be sure of what kind of tick illness this is, and if it's not a tick illness, he still didn't have to go through a spinal tap. He still feels better and looks like he is on the road to recovery. This will be a long road as most tick illness likes to take it's time leaving the body. He has lots of muscle pain and I'm pretty sure his head hurts and most of he gets very tired very quickly but he is playing!  Most of all, I see improvement, it's slow but it's there. For all who have prayed for our little man, it's working. Keep it up!
The prayers of Gods people are heard and he answeres. I think the entire town was praying for Jett and I am forever grateful for that because I am sure that's how we were treated so promptly. I don't recall ever having felt other peoples prayer for us that deep before. I felt the prayers and I felt The Lord's presence.
I have had many prayers that I felt were not heard, On may 21st, 1996 I prayed for God to spare my sister, Amy's life and He had other plans. I prayed for God to spare my oldest son, Jacksons life on May 6th 2010  and that prayer was not answered, but on October 16th 2013 my prayer was answered in every way. So while our prayers don't always work out the way we need them or want them too, sometimes they do work out better. Never give up hope, and never tell me it was coincidence that Lacey saw that tiny embedded tick behind my babies ear, I was there. There are no coincidence's.

Romans 8:31 :What then shall we say to these things? If God is for us, who can be against us?

                                                    At least one parent got some rest ;-)
woke up ready to break out after 2 doses of antibiotic and countless prayers !

Tuesday, October 15, 2013

Hurricane season

Ecclesiastes 3:1 There is a time for everything, and a season for every activity under the heavens

I actually wrote this blog first and then thought "I'm gonna go look up some friend quotes." Low and behold the first to catch my eye was Ecclesiastes 3:1. I did not type in anything about seasons, this is how the Lord works people. Here you go...

I could give a thousand quotes on "friends", but none can touch the truth. A friend is a person placed in your life in certain seasons to hold us. Maybe they hold us up, or maybe they just "hold us".

I have more friends than I can count. I have life long friends, new and old friends. Some people I count as friends and have never met them in person (thanks to social networking). I have learned more about friendship and love in the last 3 years than I could in a lifetime. The first thing I noticed is that God moves friends around. He moves them in out of certain seasons in our lives at the most perfect times, we may not even notice it at the time, but He does and I can show you.

I have a friend who is my very best friend and has been for a while now. She has a son who is Jacksons age, and we were close when the boys were very young (a season). She saw us at some of our worst times as a family as she was there when Jackson was diagnosed with Juvenile rheumatoid Arthritis and all the testing and waiting that came with that.  Gradually, that season of friendship ended and while we never lost touch, we were just busy with our own lives and just were not as close. I cannot express how Gods hand was all over that first season of our friendship coming to an end. I never really noticed that we were not as close, it just happened, like a gradual drift. I am so thankful that Gods plan worked to separate us at that time. Her son and Jackson were never really "super" close. While that may sound odd, its not and I'll explain why. When Jackson went to heaven, I was lost. I had friends but I could not tolerate seeing them, most of them had boys Jackson's age and I could not stand the sight of them. However, when God moved my very best friend back into this hurricane season, the timing was perfect.
I don't know very many people that would come to you in the eye of a fierce hurricane that was as unpredictable as that season in our lives was. I don't know many, but I know a few. God moved people and dropped them into our lives like healing rain. They came into our lives, weathered the storm and we are still standing because they allowed themselves to be moved when God told them to move.
Three long years later, I continue to make the best friends. Some of them do have kids Jacksons age, but they were not close to Jackson in a social way. Those people never catch me off guard, I know that God has put them into my life now and not then for reasons we will never understand. These friends are some of those gifts we never asked for.
I love to step away from the splattered painting of my life and SEE the gifts God gives me. He sends us life boats in the hurricanes of this life. I'm gonna end this with a joke that I heard from a previous pastor, mostly because it makes me giggle. Here goes:
A horrible hurricane was coming up the coast and all residents were told to evacuate the area for their safety. One man decided he was going to pray and wait out the storm. An evacuation vehicle came to his house and the man told them "its okay, go on without me. My God will save me." so they left. A while later while the water was rising a boat came by to try and talk the man into getting out of there, but he told them " its okay, go on, I'm praying and I know my God will save me." A while later the man is on his roof because the water is so high. A helicopter flies over and lowers a ladder to save the man, but he says "I'm waiting on my God to save me, I know he will." Just then a loud clap of thunder came out of Heaven and the voice of God said "Come on son, I sent a car, a boat and now a helicopter, I am saving you!"
There is a reason that I remember this joke from literally about 20 years ago. God placed that seed of humor in my heart because The Lord knew I would need it. When you pray and ask for God to save you, look around you, He probably is.....


Sunday, October 6, 2013

Watching and Waiting

Psalm 104:1-35                    
Bless the Lord, O my soul! O Lord my God, you are very great! You are clothed with splendor and majesty, covering yourself with light as with a garment, stretching out the heavens like a tent. He lays the beams of his chambers on the waters; he makes the clouds his chariot; he rides on the wings of the wind; he makes his messengers winds, his ministers a flaming fire. He set the earth on its foundations, so that it should never be moved. ...

My husband and I just celebrated our 10 year anniversary in Jamaica. There are no adequate words to describe the whole island experience for me, but for the sake of sharing with you, I will try ;-)
This was our first trip out of the US, and I must say I was not nervous at all. I was so excited that it really could not be contained. Even people at the airport asked us where we were going because I looked so excited! (yea, I don't get out enough). In 10 years Josh and I have not been anywhere over 1 night just the 2 of us. I was weary of how I would feel being separated by 2 flights and approximately 6 hours of travel from my kids. God was all over that feeling, he just replaced it with a peace that only He can give, we were meant to go on this vacation.

Once we arrived, I stared to relax and catch on the Jamaican moto "no worries mon!" I was like a different woman, I really had "no worries" for a few short days. The way the island made me feel is like nothing I have ever felt, I felt free. I felt like I was so close to the glory of God that I could reach out and grab it. I slept all night without waking up (un heard of for me) and by dawn I was sitting on the beach watching and waiting with coffee in hand.

There is not one thing we had to do for 5 days, not one single thing. Can you imagine that? I couldn't ! I told God that on this trip I would not worry or stress, that I only wanted to focus on my husband and relax. He made that possible, for 5 days I had "no worries mon." when you live a life with a gaping hole in your chest, its hard to believe it will ever be possible to let go and have no worries. I thought it was impossible, and God reminded me that nothing is impossible with Him. I was reminded of a time when I could not smile and I experienced a pain so deep that I struggled for air, and I was that way for a long time. While I remember that pain and it still hurts so bad, its almost like I'm literally seeing it through the grace of Jesus. I cannot imagine living a day without all my children, yet I do it. I cannot imagine living through such a tragic loss, yet I do it. The thing about that is this; I don't do it. I don't remember a specific time or a huge revelation happening, but at some point I decided to trust God. I realized that not only could I not imagine going through all those things, I absolutely could not go through them.

I spent months watching and waiting for the Lord to return on his white horse and save me from this tragedy and make it all new. I would wake up at the crack of dawn and head strait to the porch , coffee in hand, to continue my watching and waiting. While time and grace have made my time here bearable, my heart still longs for eternity with Jesus. I still long to be whole again, to see my son again.

It wasn't until I got home that God showed me the parallels of the watching and waiting from then to now. I do the same action, with a different heart. In Jamaica I woke up at dawn and eagerly headed to the beach to SEE the beauty that God so freely shows off on the island. 3 years ago I woke up at dawn yearning for Jesus to come and end my sorrow, there was no beauty in that only pain and waiting. Now I wait and SEE beauty at the same time. While the longing has not changed, the heart of the longer is forever changed.

I want to share a photo that I feel shows a little glimpse of how my waiting and watching has changed. Our last day on the island it rained, and I mean it rained and rained. While most people were on their balcony reading books or in the recreation area playing pool or ping pong, I was on the beach. Josh did not believe me when I told him the sun would eventually shine if we just waited. I knew in my soul it would, and I did what I do. I waited, in the rain, with my book under a huge umbrella when it rained hard. On the beach as close as I could get to the ocean when it would stop. When the sun finally peeked out, I knew it was for me. I felt the SON on my face and I had the sunburn to prove it! I waited and the sun and SON shone on me. That is just another sweet reminder of why I keep watching, because He keeps showing me, and Lord knows I don't deserve it. That's the thing about Mercy, it's free. Reach out and take it.
                                            perfect place to SEE. Psalm 104:1-35
Here is my seat, as close I could get.