I've been meaning to update but it's been busy! And when I have time, I'm pretty tired and just want to take a nap haha. Anyway.. to pick up from where I left off --
God is awesome. Through a mistake by nurse, God revealed to us the way to sustain the IV in my left hand less painfully!! How awesome! Here's that short story (well.. I'll try to make it short :P )
So of course I was terrified and very stressed about the fragile, painful, but so necessary IV in my left hand. We wanted to make sure we used it for the antibiotics, and didn't tire it out by running fluids in it or something -- we weren't sure if that could actually happen but it seemed possible. In trying to avoid as much pressure as possible on the IV, they were doing a saline flush after my meds through an IV drip, rather than a handheld flush. That helped, however, they still had to manually push a flush before the antibiotics were started each time. I was ok with this (even though it hurt SO BAD) because, like I said, we wanted to IV to last, and weren't sure if it could handle much more than just the antibiotics. Anyway, one night, after explaining everything over once again to our new night nurse, she said she was going to let the flush drip in like it should, and come back and turn it off after I had received the sufficient amount of saline. I felt comfortable, and was completely exhausted anyway, and fell asleep. I woke up to my IV machine beeping a few HOURS later only to find that the saline bag, which was full before I had fallen asleep and should have still been full since a flush is only 5ccs of saline, empty. Yes, that's right, the bag was empty. The nurse never came back to turn it off, and now I had gotten that WHOLE bag in my FRAGILE IV! I was so upset. I went to the bathroom and .. out of all the places for God to confront me -- He did so there. hahah! When I saw the empty bag, my mind was made up. I was staying up the rest of the night because OBVIOUSLY I couldn't trust my care in the hands of this nurse. What if this IV had blown?! What if now.. 3am .. when I'm still sooo tired, they had to take it out and try to put another IV in when this last IV was a true miracle? My mom was asleep, and I certainly wasn't going to wake her up -- she needed rest too. Plus, I was still in the bathroom because I was so angry and venting to God about this nurse. All I kept thinking was -- UGH God, I can't believe she did that. Now I have to stay up. What if the IV had blown?! --------
But it didn't.
Wait.. what? Yep, there was God answering me back just as he did Job (just.. not audibly haha ).
My Dear One,
Don't you trust me? The IV didn't blow. In the past, I have used other things and other people to help and protect you. Medicines to improve your health, your mother and the gifts I've given her to guide you and watch over you so you get the right care. But do you doubt that I, MYSELF, can protect you without using someone else? Do you think my power can only work if I pair it up with something else? Can't I save you with MY SPIRIT ALONE?
Woof. There I was.. in the bathroom.. being confronted. It's true. I know my medicines come from God. I know my mother's wisdom and love come from the Holy Spirit. I know that God protects me from the unseen -- how many things has he fought off without me even knowing? But when I have I seen HIS HAND ALONE move? Just because in the past he's chosen other routes, doesn't make his power any less.. well.. powerful.
That night was so frustrating, yet comforting at the same time.. God showed me that HE ALONE protected me. That IV held up for that whole bag. And yet, God gave me the discernment later on for when the nurse made another mistake (but I don't need to go into that.) and showed me that HE WILL and DOES protect me, and he still gives me discernment of when I need to be paying attention to help protect myself as well. AND not only that, now we knew that my IV could withstand all that fluid -- and my daytime nurse, by the Grace of God, came up with the solution to have the fluids constantly running -- all day except for when my antibiotics were infusing, that way there were no manual flushes at all -- and no pain for the most part!!! Praise God!!
So anyway.. now onto bigger and more awesome things Jesus gave to me.
The man next door had a horrible night. I'm not sure what was wrong with him.. perhaps paranoid skytzophrenia (i know as a psych major i should know how to spell that.. but i don't.). Anyway, this poor man had such real delusions. He was screaming in terror the whole night with only short moments, maybe 3 minutes each time - if that, of relief.
"Help!! They're trying to murder me!!" I felt awful so I started praying. And then I got a little frustrated. If I were the Apostle Paul.. I would have walked right into that room following the Holy Spirit, being fed up with whatever demon or illness was tormenting this man, and just as if I were telling my sister to stop talking, I would cast that demon/rebuke that illness in the name of Jesus and it would come under the authority of Christ and leave that man alone!
But.. that's not what God was telling me to do. What happened to the power the Spirit had in the book of Acts? Why can't I go in there and use the authority Christ TELLS ME I have? Why is it that in Acts, that would be a normal occurrance but now, it would be "radical" or "mysterious" for the Spirit to move like that? God.. if you're the same yesterday, today and forever.. why aren't you leading me to work under the power of your name? So many questions.. but in the end, I submit to God, and he wasn't saying go.
The next morning I was scheduled to get another heart ultrasound (actually called an echocardiogram). We took out the IV that waas in my port because the needle had to come out that day anyway (it has to be changed every week during IV treatments) and the tech felt that we would get a better picture if they weren't restricted from that area of my chest. So.. they did the test. Of course, we have no idea what anything means, and the tech isn't allowed to tell us anything regarding the results. Next thing you know, a wheelchair is at my room to bring my downstairs to radiology to get a VQ scan done. It was an EXTREMELY busy morning lol. Anyway.. a VQ scan shows how well my heart and lungs are working together, and how well each lobe of my lung is being oxygenated by my heart. We were about to go downstairs for the scan, when the nurse came in and unhooked my blood thinner. We asked why, and she said the order was discontinued. Hmm.. Well.. earlier that morning my doctor had said she was going to try to get me injections of blood thinners, that way we could go home. So.. we went downstairs and I said to my mom -- oh pray that it's so we can be on injection and go home! Meanwhile, I'm seeing all these sick people laying in a bed, or sitting in a wheel chair. I want to go over and have the Spirit use me to heal them. I want to live in Acts. And as I was thinking about all those questions again .. it dawned on me -- I'm praying for blood thinner... why am I not just praying for no blood clot? If I'm asking and desiring the Spirit to move on behalf of these other people, shouldn't I first have some sort of faith that He can move on my behalf? Even if his answer was no, shouldn't I at least ask? So I did. I asked, and I told my mom that's what I'm praying for -- we go back upstairs after this scan and hear -- there's no blood clot. Even though I was trying to pray with expectation, I can't say I wholly believed that was going to happen. I don't mean to sound pessimistic, but so far, God has given me the gift of long suffering, and although He certainly has given me mighty, mighty victories, a total healing hasn't been one, and when it comes to things like this, the victories are usually that He pulls me through with new, glorious revelations of Himself AFTER I go through. Praise Him for that!! But that is probably why I doubted a healing of the blood clot. Sorry, Lord.
The scan was cool. The machine was called "The E. Cam" which was funny and above the machine where I lay was a picture of a rainbow -- just like God to remind me He's faithful to his promises. I had to breathe in this gas stuff.. and then breathe in a mask that felt like it had limited air -- very hard to breathe in that. It only last like 9 minutes or something and then they came and put something in my IV (which Praise God again because they could use the IV from my right hand and not have to put in a third IV!). Then I just lay there as the machine takes pictures of my chest.. and then I was done! Back upstairs we went!
After finally getting out of the wheelchair and into my bed, my phone rang.
"Emily?"
"Yea.."
"Hi, it's Dr. DiMango. Has Dr. Engle called you with the results of this mornings echo?"
"No, he hasn't"
"Oh .......... there's no blood clot."
.................
Praise You God, My Father, My Protector, Redeemer, Healer, Lover, SPIRIT THAT WAS ALIVE IN ACTS AND STILL IS TODAY <3
---------------
I almost dropped the phone. Here everything was going downhill and fast because of this serious and potentially fatal blood clot.. And here I was asking God why he doesn't move like he used to.. And here he was telling me -- But my beloved... I still do.
I can't even say anything but Praise you <3
It was .. incredible. And then the good news just kept coming. There's no blood clot -- what they thought was a blood clot is actually just fibrous tissue.. almost like scar tissue but not.. it occurs usually on pace makers but can happen on ports as well..
we can use my port again!!!!!!!! it's completely safe and i can go HOME on IVS using my PORT!!
all the stress of if my iv blows is gone.
i don't need to be on blood thinners. not IV and not injection.
we can start my chest therapy again!!!
we can go home the next day!!!!
we can take my right hand IV out!!!
and if my left one blows, we just hook up my port early -- but if we can keep the left hand going for just a few more doses, we can pull that IV and then I have 6 hours to be IV free and shower -- no port and no peripheral IVS.
God.. when you give.. you don't give minimum.. you exceed our thoughts every time.
We prayed for my peripheral IVs to last three days. We prayed EVERY dose of antibiotice I got .. "God.. just let us get through this dose." every time.
We prayed for three days. We got four.
JESUS <3
My vocabulary fails me in expressing his goodness.
So.. I got my last hospital dose of antibiotic.. and am sitting on the bed, more than ready to come home when I get really dizzy. "Oh no", I thought. "I'm SOO CLOSE to going home, but I can't keep quiet about this. I've never felt like this before..." And then my mom looks at me and says "Do you feel that?" HAAHAH!! The breathe of relief that came out of my mouth was like a rushing wind! We looked over at our water bottles, which were shaking, and my IV tubing hanging on the pole, swinging back and forth. That's right ladies and gentleman. We went out of the hospital with a great victory and .. and earthquake! HAAHA!! God cracks me up!!!
This hospital stay was insane hahaha!! To summarize :
I go in for a doctor appointment, and don't come home.
What started out as a harmless test, showed that I have a blood clot.
My dad gets hit by a car in the downstairs parking lot.
I'm in a room upstairs, my dads in a room in the ER.
My dad's ok because God protected him with water bottles!!
I don't have a blood clot!!
We're leaving and have an earthquake!!
HAHAH!!!
Anyway.. we get home.. and of course had our ups and downs -- I got a fever, felt sicker, got better, etc. Not to forget hurricane Irene. The preparation took a lot but Praise God that we didn't get hit! Lots of rain and winds, but our basement only got a little wet, no flooding, and our power went out for literally 2 seconds before coming back on fine.
Today I went to the doctor for my second injection of xolair and they asked if i wanted to do a breathing test. I go into the little room and get weighed, then do the test. Here are the results.
My weight is up from 89 lbs to 92.8 lbs
My lung function is up from 33% to 40%!!!!!!!!!!!! Thank you Jesus!!!
I still have a lot to do to try and build up my lungs and my body is still too weak and tired too easily. I have a journey still in front of me as I continue to battle Cystic Fibrosis.
But I am sitting here typing this, having just finished my last IV dose, with no IV in my right now, and no IV being put back in anytime soon, with a lung function of 40%, and no blood clot. To say I'm in awe would be the understatement of the year.
Thank you for your prayers everyone. God is.. beyond anything I can describe.
"Take these hands and lift them up, for I have not the strength to praise you NEAR enough."
Psalm 4:6-8
"6 Many people say, “Who will show us better times?”
Let your face smile on us, Lord.
7 You have given me greater joy
than those who have abundant harvests of grain and new wine.
8 In peace I will lie down and sleep,
for you alone, O Lord, will keep me safe."
I'm home because God is love.
Tuesday, August 30, 2011
Saturday, August 20, 2011
Oh What A Night
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
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
Friday, August 19, 2011
To hear or not to hear, that is the question
So despite the current situation .. I have to write about the greatness of God. He is just so nice! And bahhh. He's PERFECT <3 Strong, protective, loving, understanding, etc...
Today I had a hearing test to see if I am truly completely deaf in my left ear and to determine my level of hearing in my right ear. The woman from audiology and her two students came to my room, hooked up the machine, and did the test. The head of audiology was speaking with us and with a minor gusto told us that she does not understand how I can only be deaf in my left ear. If I went deaf from the use of a particular medication (which I won't say what it is, because it is a wonderful drug, but unfortunately was OVER used in my case), it would be systemic -- meaning I would go deaf in both ears, not one. So she asked rhetorically, why isn't she deaf in her right ear? That's a legitimate question. The only problem with her question .... it's not rhetoric. There IS an answer of why I'm not deaf in that ear and it's because of the Grace and Power of Christ Jesus! He put his hand over my ear and said no. I LOVE IT!! The woman didn't seem to believe that answer, but that doesn't change the fact that it's true. I only hear because God protected that ear. He only let the attack go so far. I absolutely love that God, the same Creator and Almighty who set the boundaries of how far the ocean rolls onto the sands, did the same thing on me! He set the boundary, and protected my right ear. What a Mighty King <3 It was so nice of Him to remind me of that today. Besides that, he blessed me with such a great afternoon of laughter, he showed me his wonder and how he pumps my heart (I got a test that's like an ultra sound, but on my heart), He is the Redeemer, Protector, Fighter, Lover, and KING!!! I will write more tonight if I can, but I'm not sure how I'll feel after they put in the IV (pray for IVS -- we need to have to IVs in my arms running at the same time). And.. they are getting ready to start, so my arms are kind of needed to make this successful :P Thanks for the prayers.
I can hear because God is love.
Today I had a hearing test to see if I am truly completely deaf in my left ear and to determine my level of hearing in my right ear. The woman from audiology and her two students came to my room, hooked up the machine, and did the test. The head of audiology was speaking with us and with a minor gusto told us that she does not understand how I can only be deaf in my left ear. If I went deaf from the use of a particular medication (which I won't say what it is, because it is a wonderful drug, but unfortunately was OVER used in my case), it would be systemic -- meaning I would go deaf in both ears, not one. So she asked rhetorically, why isn't she deaf in her right ear? That's a legitimate question. The only problem with her question .... it's not rhetoric. There IS an answer of why I'm not deaf in that ear and it's because of the Grace and Power of Christ Jesus! He put his hand over my ear and said no. I LOVE IT!! The woman didn't seem to believe that answer, but that doesn't change the fact that it's true. I only hear because God protected that ear. He only let the attack go so far. I absolutely love that God, the same Creator and Almighty who set the boundaries of how far the ocean rolls onto the sands, did the same thing on me! He set the boundary, and protected my right ear. What a Mighty King <3 It was so nice of Him to remind me of that today. Besides that, he blessed me with such a great afternoon of laughter, he showed me his wonder and how he pumps my heart (I got a test that's like an ultra sound, but on my heart), He is the Redeemer, Protector, Fighter, Lover, and KING!!! I will write more tonight if I can, but I'm not sure how I'll feel after they put in the IV (pray for IVS -- we need to have to IVs in my arms running at the same time). And.. they are getting ready to start, so my arms are kind of needed to make this successful :P Thanks for the prayers.
I can hear because God is love.
Thursday, August 18, 2011
LOTS of rambling on
It's that time again... time to blog! And now that I actually have time to blog.. brace yourselves because these might get a little lengthybut maybe not.. we'll see haha. Anyway.. I'll make this entry a short one.. not because there's not a lot to say... but I'm pretty tired and only have 20 minutes to relax until my next treatments and therapy. So... basically I'm doing fine in the hospital. My oxygen beens running a little low, so I'm on oxygen most the day, but I can take it off sometimes. I've been here for 3 days now, and I don't feel a change in my breathing, but my cough is looser, and I'm not hacking up a lung all the time anymore! I just wanted to remind everyone that I'm not dying over here. This wasn't an "o my goodness, she can't breathe! admit her to the hospital!" type situation. I have been breathing badly, and recently having symptoms that it's getting worse. I got so used to the way I was breathing, that I didn't realize that I should NOT be breathing like this. My doctor, however, recognized it right away, and acted on it, which is good. I am excited to be here because for the past year or so we've been treating my CF infections and I'd get "better" and then just get sick again sometime not too long after. The past few weeks, though, I've lost weight, and my oxygen has been a little lower than normal. So, here in the hospital, they reviewed my over-night tube feed regimen, and came to the conclusion that if we changed the regimen, I might benefit more from it. Who knows, but it's worth a shot! So we're working on that.. and I'm on IV antibiotics for my lungs.. doing therapy 3 times a day... andddd.. just trying to turn this around. It's been good so far. The nurse even switched our room the first night we were here, to a room with a beautiful view of the GW bridge and Hudson river. How nice is God? I'll post a picture on here another time. Anyway.. God has just been holding on to us, protecting us and guiding us. But that shouldn't be surprising. hahaha. Anyway. I wrote wayyyy more than expected (shocker, I know.). I'll try to blog tomorrow and tell about how sweet Jesus is, but it's going to be a busyyy day tomorrow, so we'll see. Anyway, thank you for all your prayers!!
This road isn't a dead end because God is love.
This road isn't a dead end because God is love.
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