just a forewarning -- this blog is not going to be grammatically correct lol i know i have typos on my other ones i've been too lazy to fix, but i'm not even going to try with this one (with the exception of God's names) because it's hard to capitalize with the ivs in my hands, and i dont feel like taking long to type this just to get in the capitals. soo... for those grammar perfectionists out there - proceed with caution.
so before i get into all that went on last night, i want to tell about how nice God is. i dont want his mercies to be forgotten or blanketed by the attacks of the storm. so.. like i said last night, the hearing protection was AWESOME. later yesterday, after the hearing test, i got an echocardiogram (not sure if i spelled that correctly), but anyway it's basically an ultra sound but on your heart. it..was..awesome! i know everyone says how the heart never stops working but i didnt really grasp that. it was so crazy to see my heart pumping CONSTANTLY and all the valves and parts! kind of.. for lack of better word .. gross .. but so beautiful at the same time. i really cant explain what it was like to see how much your heart beats, and to think -- God is the one pumping EVERY beat - blew my mind. if that was a job, whoever was doing it would be completely completely overwhelmed, but God isn't. It blows my mind how God works.. i really can't explain it.. we don't even know how hard our hearts work, but God does. God is doing the work in our hearts, and every other part of our body that we do and don't realize is working. and on top of just watching it on the screen, the woman explained the different valves and blood flows... what a genius God we serve!
the day was hectic because the hearing test delayed therapy, which delayed breakfast, which delayed insulins.. and everything is on a timed schedule so we were scrambling to make up for lost time. i didnt sleep well the night before and tried to get a nap in, but doctors were in and out and between everything, i didnt get to. i DID , however, get my first injection of xolair!! xolair is a drug used on asthma thats now in a trial for helping with the fungus that is causing me so many problems. they think this cf exacerbation is from the fugnus, and feel my overall decline is from it as well. anyway, the xolair might help.. and theres been some confusion about it between my doctors of who can get it and who cant because it's no a drug that's easy to order, but thank God - my insurance approves everything i need for my cf. so that was exciting to start andddddd God just keeps giving! We received a call shortly after from my doctor that the fungus test BEFORE i got the xolair was down to 977! The lower, the better. i came into the hosp at 1400. also, very rarely the xolair can have extreme allergic reactions. so we had the epi-pen ready, and prayed... and nooo reaction!
then.. i had a very blessed afternoon! my friend since kindergarten/sister in Christ came to visit me along with her boyfriend, and our friend Melissa!! It was such a blessing to be able to sit and talk and laugh! It was so generous for them to come and stay so long, too. AND they brought me balloons, a joke book and a little stuffed animal (so cute!)! Thanks guys!! It was a busy, but good day.
But then came the night.
The echocardiogram not only showed us how hard working and beautifully glorifying to the Lord that organ is, it also showed us that there is a blood clot on the cath IN my heart.
My port is the permanent iv that i have in my chest. the tubing (cathiter.. aka cath) goes right into my heart. so it was cool to see it flapping around in there yesterday, however, having a blood clot IN my heart is not good.
I originally didn't think it was THAT big of a deal.. but i'm learning differently.
The doctors expressed to us that if the clot dislodges it has potential to lodge somewhere else, causing a pulmonary embelism (sp?) which can be fatal. this is not where i am right now... but precautions need to be taken to prevent this. again --- not happening right now, its just a possobility that my doctors are aware of and therefore safeguarding me from. please pray that doesnt happen.
also, there was debate about what to do with the port last night. the definite plan was (and is) to run blood thinners through IV to prevent the clot from becoming bigger. most blood clots are reabsorbed by the body, which we are hoping/praying will happen. the controversial part was that some doctors felt the thinners should be run through the port itself, and others were completely against that.
If we run anything through the port, the fluids might push off the clot, putting me at risk for embelism. However, if we stopped all use of the port, the entire porticath line (it goes from my mid chest veins, to my neck veins and winds down into my heart) would be compromised. 5ccs of blood thinner before you stop using the port for an amount of time is the said requirement for maintaining the portline and keeping it unclogged for your next use. So.. if we cant run ANYTHING through it.. i could lose my port.
So.. we could run it through the port, or we could stop the use of the port, and put in two peripheral IVs - one in each hand.
It was a very emotional night. I was extremely bipolar - praying and standing on God's promises, and then crying. Then praying, then crying. our final decision was to very slowly push 5 ccs of blood thinner through the port to preserve it, and then put in the two peripheral ivs.
now i don't mean to sound dumb, but i havent had a peripheral in a long time, and the insertion, although its nothing, was making me nervous.
so, the first iv was put in my right hand. it went well. the nurse got it in successfully the first time. the second iv, however, didnt go quite as well. I have small veins.. but apparently the veins on my left side are really small. The first stick, it wouldn't insert because the vein was too small. The second try -- the iv inserted, but then blew, which usually means that the vein got punctured, and then swells (blows) up. My hand turned black and blue and swelled very quickly. Obviously that iv didn't work out. While we were pressing a cold soda can on the area to stop the swelling (hahaha), the nurse looked at the other veins in that hand, and in my arm. She didnt feel she would be able to get an iv inserted into the left arm or hand. she was willing to try, but still felt it would be unsuccessful. The nurses told us we could have a doctor try - ssometimes they are good at it and sometimes not so good. We elected to try and have a doc do it, although it'd still be hard because of my small veins. The doctor who came in is one i like! I met him the other night when we were having complications with my blood sugars, and he came in and gave us our options. 1) we could try for an iv in the left arm/hand 2) we could put an iv in my foot -- but then i cant walk 3) an iv in the neck ( TOTALLY skeeved me out!) or 4) we could try to run the blood thinner through the port - if we have to do that we will, but its trying to be avoided.
So we tried for a left hand iv and praise God - he gave guidance of that doctors hands, and that little needle to go in! it inserted! pray it lasts, because its in such a small vein (i'm used to small things.. and i was even surorised how small the vein was) and its in between my knuckle area, so its very fragile. also, because the vein is so small, they had to use an extra small needle, which can only handle a certain amount of pressure and infusion without blowing.
When the IVs were going in.. i was praying. desperately. I was anxious about the pain, about getting a good working line put in, and considering i was already an emotional bomb, every little thing brought tears back to my eyes. And as i was praying, the Lord reminded me of a verse i read two nights before.
Philippians 1:29 "For you have been given not only the privilege of trusting in Christ but also the privilege of suffering for him."
PRIVILEGE! Not job.. not burden.. PRIVILEGE! when they were poking my hands, all i could think of was the ivs going through the hands - like the nails in Jesus. my Jesus can more than relate the this small pain. All i could think during insertion was -- thank you for the scars, Lord <3
I have the privilege of having my hands poked because my Saviour had his pierced for me.
Crazy.
So.. last night was rough.. i didn't sleep much at all -- neither did my parents, who both stayed last night. This morning, as they were running the infusions into the left hand iv, it hurt. I could feel the pain pulsating in my vein - it was driving me nuts. And just fyi, i used to get peripheral ivs when i was younger before i got the port, so i know about them. i know what it feels like when theyre starting to blow - and this morning, that's what it felt like. of course, my anxiety probably didnt help. i was praying and singing songs to God in my head, and the Spirit just gave me such a nice prayer. I asked God to hold open my vein -- spread the walls of my vein and not allow them to collapse, hold them open with his very hands. As i was singing in my head, i also asked that the pain stop because i was just so done. I was so tired, and trying to sleep, but couldnt because the pain. i was so emotionally tired, that i couldn't even be frustrated about this, just sad. and i continued to worship, not even a second later, for real, the pain was gone. GONE. Jesus swept over my hand and healed the pain --- he held my veins open like he held the walls of the red sea open. He healed my pain.
MY JESUS BROUGHT ME RELIEF.
I cant even express how wonderful Jesus is. That word relief means so much when you just can't find any. But i found it. Jesus. <3
Today has been a relief day. It's very stressful with the ivs, because they could stop working at any time. They are painful at times, and the stress of the clot has brought up complications such as i'm not allowed to do my chest therapy - which is a necessity for airway clearance - because theyre afraid any kind of chest compression could dislodge the clot into my lung. What a blessing that has been today! No therapy made so much time in my day, i was even able to take a nap! Furthermore, i have an intestinal infection, and it was getting kind of bad. We thought it was no big deal, however, the doctor informed us that .. just like everything else in the world lol... if this remains untreated or worsens to a degree it could lead to surgery or be fatal. today though, we have seen a drastic improvement from yesterday in this area! it is still bad, but so much better than the previous days! Thank you God for using the medications! That's pretty much it for today i think. for anyone who's actually reading this novel, i hope this is a testimony of God's incredible love. I hope he speaks through it and thanks for reading and praying!
I am not privileged, not suffering, because God is love.
I have two working ivs because God is love.
Jesus brings me relief because God is love.
I am typing this.. because God is love.
PS -- please pray for alyssa sabo - she is a young woman with a mighty testimony and although God has brought her through SO MUCH, she still has quite a journey ahead of her and much glory to bring to Jesus' name! http://www.facebook.com/#!/event.php?eid=250827721601132
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