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.
No comments:
Post a Comment