Hopkins Update, Day 8

Hi everyone,

Thank you for all the prayers and for continuing to walk this road with me. Here's my attempt at an update on the past few days.

SUNDAY EVENING
Sunday night was great because the Raven's won, and I got to hang out with my new friend, Chamara! :) The night was especially challenging because I couldn't sleep and my tube feeds continued to run at the goal rate, but Monday morning was a new day, and the doctors gave me the news that I should be released at some point that day.

MONDAY
On Monday afternoon, a nurse from the home health program stopped by my room to teach me how to use the pump for my antibiotic infusions. It's a smallish bag that runs continuously and gives me my main doses every four hours. I will be on this for another three and half weeks or so. Chamara stopped by to say hello and help me pack up a bit. Then she surprised me by inviting me to go to Disney on Ice with her and her little boys. What a treat that will be! My mom came up with my brother, Robert, and we went through the discharge papers, got packed up and began saying goodbye to a bunch of the staff and new friends that I already miss.

During this time, I began noticing a growing difficulty breathing and much chest congestion and coughing. We decided to head out anyway, but by the time we were just outside the city I had to have my mom pull over and help me get more air. It seems that I was having an allergic reaction to either the dairy in the formula or something else (Children's Hospital confirmed dairy allergies last summer), so I decided I'd have to find another one. We considered going back to the hospital, but I really wanted to go home, so we headed back to 95, and God gave me grace to keep hanging on.

TUESDAY
It was such a blessing to sleep without interruptions, but when I got up the next morning (afternoon really) to contact my nutritionist and work on finding another formula I suddenly realized something was very wrong. I couldn't think straight, felt extremely weak, and collapsed onto the bed. I suspected my blood sugar had taken a huge dive after going from constant sugar infusions to zilch for 24 hours. I really didn't want to go back to the hospital, so I had my mom put diluted lemonade through my g-tube, and we began tube feeds with my old formula from last year. I started trying to track down a glucometer and a few hours later my friend brought over her sister's extra one (thank you, Liz!). My sugar was 67 so not too bad. I continued on the tube feeds and by the time bed came, I was at 80, so God definitely provided and carried me through that little crisis.

In the midst of all this, God sent even more encouragement. Two packages arrived in the mail - one was a beautiful, cozy blanket with blue and brown sparrows that my Wheaton friend, Charlotte, had made for me. The other was a book titled, "Braving the Storm," by Eric Gaudion, a pastor in the UK who has walked a very painful road and learned much about how to comfort others. The doorbell also rang, and there was a beautiful flower arrangement for my family from our sweet neighbors, Paul and Kaylan. So blessed. Then Paula came and braved the subzero temperatures and my two bags to help me move around a bit and pick up a few things from the library at Lakeforest Mall.

TODAY
At the moment, I am continuing on my old formula because I have to have some source of nutrition, but it is very difficult. I am experiencing a number of symptoms from before including brain fog, GI distress, weakness, additional pain, etc. but am grateful that I can breathe. :) My hope is to find a formula that I could make at home that would be better tolerated but it's complicated because the formula has to be a particular viscosity in order to be put through my tube. I have honestly been quite overwhelmed by it all today, and my heart has been heavy and weary and struggling. In the midst of it all, God has been very patient with me, and He continues to send hope and encouragement.

This post has turned into a book, so I'm going to wrap it up for now. Thank you all for every prayer. The best way to pray at the moment is that God would shine His light on ONE next step for me to take. There are so many good ideas out there, but I just don't know how to implement them.

Love you all.
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I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
Who made heaven and earth. - Psalm 121:1-2

Hopkins, Day 7 Update

Dear friends,

I greatly missed being at church this morning and with so many of you, but God has blessed me greatly even inside this hospital.

Last night, I had the privilege of meeting, Jessica Rehn, a true hero and someone I so greatly respect for her endurance, joy, faith, and trust in the Lord through the dark valley of cancer. God miraculously healed her of stage four breast cancer this past year. She came to visit me last night even though it was quite late, and we had a wonderful time laughing and sharing stories of God's goodness in our lives. She is a fighter and I learned a lot from her faith.

After Jess left early this morning (it was after 1am!), I got to know one of my lovely nurses from Cameroon a bit better, and learned that she was a Christian. We got to talk about all our favorite songs.

I was able to get some sleep last night, and the tube feeds have continued. I was bumped up to 30 this morning and have been at my goal rate of 40 for about two hours now.

This morning, I enjoyed listening to the songs that I was missing at church back home and started watching a Piper sermon on joy amidst suffering. I was pretty desperate for a way to move around and even hoped for a chance to see the sunlight and get some fresh air for the first time in a week, but it didn't look like it was going to happen. I asked the Lord to send me someone, and soon after, my tech came by and offered to take me. My nurse kindly unhooked me from my IV and pump, and I got to take a walk and go outside a bit. It was so encouraging to talk with Listra. She loves God and told me to keep asking and believing and I will see God answer my cries. I was so blessed by my time with her. We even ran into my new friend who put in my PICC yesterday morning!

Hopkins has a huge statue of Jesus in the historic part of the hospital, so we took time to visit it and took a few pictures. It's beautiful, and underneath are the words from Matthew 11:28, "Come to Me, all you who labor and are heavy laden, and I will give you rest." When I got back to my room, I discovered that the same verse was on my desk calendar today. :)

At the moment, I'm getting ready to have a Raven's party in my room. One of the girls from housekeeping is going to join me, and I'm grateful for the company. Anyone else is welcome! :) I'm afraid the TV is only a 12-inch, though. We'll still have fun.

So, more to come later, but for now I would be so grateful for continued prayers that I could endure through these tube feeds and know how to continue fighting and moving forward while believing in hope that He will rescue me at the right time.

Love you all!
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But as for me, my prayer is to You, O Lord.
At an acceptable time, O God,
in the abundance of Your steadfast love answer me in Your saving faithfulness. - Psalm 69:13

Hopkins, Day Six Update

Dear friends,

There are many things for which to thank Him for today. I felt your prayers last night. It was difficult getting to sleep, but I noticed that the nurse and tech were more sensitive and did their best to stay out of my room as much as possible. I actually got little chunks of sleep during the second half of the night! :)

This morning, I got up to prepare myself for beginning the tube feeds, but the PICC team showed up and told me I had been bumped up in the queue, and they were ready to put in my line. This was a surprise but a good thing as well. After some back and forth regarding whether to get a single or double lumen, they got me under the sterile tent and began working. Last August, my line went in immediately, and things were very smooth, so I was hoping for a similar experience. Not to be...they had difficulty getting it to go in the first vein, so they moved to a second. That one failed as well. On the third try, it worked! I didn't enjoy getting stuck with Lidocaine three times, but there was grace, and they were so kind. The x-ray confirmed that placement was correct, and I now have a very sore left arm with a brand new PICC attached. My antibiotics, IV fluids, and electrolytes are now running through it.

The tube feeding was delayed due to the absence of an available pump and eventually began this afternoon. I started with a small amount of water for an hour or so and then moved to formula at a slower drip rate. The plan is to bump up my rate by 10 every six hours until I reach the goal rate of 40. During this time, they have to watch for refeeding syndrome (basically complications with electrolytes and other metabolic functions due to the reintroduction of food after a period of not eating). If I am functioning alright by the time I reach my goal rate then they will release me Monday. I will then have home care services which will help facilitate the antibiotics as well as tube feeds.

God's grace has truly been sufficient for each moment. Presently, I am especially in need of endurance and help for persevering with the formula and tube feeding. Even though the rate is quite slow right now, I am experiencing strong neurological and GI symptoms and find myself far weaker and unable to do as much as I could before this began running. (It is also a little unnerving to have four lines going into you at once.) :)

On the bright side, I was immensely blessed by a visit from dear Rhoda and Jane this afternoon. They brought me the cutest pair of socks (much nicer than the hospital ones), and we got to talk, read Scripture, and pray together. It was so sweet.

My parents came by for part of the afternoon, and my mom got me out of my room for a short bit. I didn't make it outside, but I caught a glimpse of the sun through the windows for the first time in a week. It was so beautiful.

A few other highlights...

This morning, one of the nurses who put in my PICC turned out to be a Christian, and we had a wonderful conversation. I was so encouraged to hear how God had worked in her family and transformed her marriage and so much else by His power and love. It was a beautiful story. She brought light into my day.

I had another sweet conversation with my tech this afternoon, and she reminded me that EVERYTHING happens for a reason and to never stop praying. It's always amazing to me how God sends people to remind me that He's still here just when I most need it.

This has been a long post, and I'm sorry for if it's there are too many details. You can always skip over whatever's too much. :)

It's not easy. I want it to end. I don't know what tonight holds. Or tomorrow. But I know Who walks with me, and that is enough. Thank you all for each and every prayer. He hears. And just think...so many of the things that happened this very day were the direct result of your prayers! All these blessings and strength in the difficult moments. Thank you.

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Let him who walks in darkness
and has no light
trust in the name of the Lord
and rely on his God. - Isaiah 50:10

January 18, 2013 Update

Dear friends, 

I made it. Once again, God was more than faithful. I went downstairs around 11:45 and went under around 1:30 and remember waking up around 3:30. It went well, and they were able to take several biopsies, and I now have a new tube. They wanted to start me on feedings this afternoon, but I was feeling so out of it that I requested to start tomorrow morning. They're scheduled to begin at 10am, and that would be a great time to pray, since this will be my first attempt since last August. I have a small sore throat, stomach pain, and exhaustion/foggy-head, but nothing like some of the previous times, and these symptoms are so small compared with my other ongoing ones, so I am grateful.

Tomorrow, there is also a chance that the PICC team will be able to put in my line but there's no way to know right now. If they do, I could end up being released but if not, I'll be here until Monday or so...guess, I'll have to watch the Ravens play. :)

Anyway, I would write more, but it's already getting late, and I want to call my sister. I was so blessed by a visit from Tiffany this afternoon, and she brought me a new little friend, a stuffed panda, and we watched a Tinkerbell movie together.

The road ahead is shrouded in mist and darkness but it is fully known to my Savior. I am so grateful that He walked this road ahead of me and will not leave me here to walk it alone now. Remind me of that when I forget.

Love you all and cannot thank you enough for each and every prayer and verse!

This is still my prayer and hope:

"I waited patiently for the Lord;
He turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
He set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God." - Psalm 40:1-3

He carried me through this, and one day, He will lift me out completely. The same can be true for you if you trust in Him.

Hopkins Update

Hello non-Facebook friends :)

I am currently in the hospital at Hopkins and am unable to write the blog update posts that I would like to, so I am just going to copy and paste the updates I have been putting on Facebook over the past few days. Sorry it's not pretty, but I thought something was better than nothing. 

So grateful for you all!
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Monday, January 14, 2013

Hi friends,

I'm heading to the ER at Hopkins with a damaged PICC line and potential infection. The line will likely have to be replaced and potentially moved to the other arm. There is a strong possibility I will be given IV antibiotics to prevent sepsis. And I may end up being admitted. This is honestly not something I want to face right now and I feel awful, but I know God has gone before me. 

Thank you for praying, especially related to the antibiotics which could present complications for my liver, etc.

When I am afraid, I will trust in You. -Psalm 56:3
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Tuesday, January 15, 2013

Hi friends,

Thank you so much for praying for me. I cannot tell you just how much I have felt your prayers. A lot has happened since I arrived at Hopkins, but to bring you right up to speed, I am currently being treated for a blood infection that could be staph or something else. The cultures are still growing, so they have yet to determine the actual strain. My PICC line has been removed, and an ultrasound revealed an abscess in my right arm but they think it should eventually resolve.

I was moved to a room at 2am this morning, and it has been a pretty challenging environment, but the nurses are kind. They began IV antibiotics on me last night and switched to a stronger antibiotic early this evening once they discovered the bacteria in the blood. I don't have a fever, and my arm is looking a little better, but they don't want to take any chances. The new antibiotic is quite strong and difficult to tolerate but so far I've only had it once.

The biggest mountain ahead is how to handle my nutrition. They are unable to put in another PICC line until I've recovered more and would like me to use my g-tube for formula. This would be much preferable except for my condition of gastroparesis which means that my stomach stays full and is slow to empty. God has been so faithful to sustain me and carry me through the darkest moments, but it is truly a struggle. My symptoms are quite difficult, and it can be even harder to communicate them to the doctors who don't seem know what to make of me. Even so, God is working out His good and perfect plan.

I was incredibly blessed to have a visit from dear Ariel this afternoon and evening. She helped me to persevere and remember that God is at work in all of this and He often allows the enemy to APPEAR to be winning for a time so that when His deliverance comes it is all the more glorious. Oh, that He might help me to hold on and trust Him, even in these dark and confusing days. His light STILL shines. He IS good. And He HAS overcome.

Thank you, thank you, thank you for praying for me. It is the most precious gift. Love you all.
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Wednesday, January 16, 2013

Hi friends,

Well, today has been full. This morning I had an echocardiogram to make sure that the infection hasn't damaged my valves. I don't have results yet, but it's likely fine since I haven't heard anything otherwise. The doctors confirmed that I have a staph infection in my bloodstream, but they weren't sure what type, so they are continuing me on vancomycin for now just to be safe. The encouraging thing is that I don't have a raging fever or extremely low WBC, but it's still quite serious so they have to continue the IV antibiotics and told me I can expect to be on them for anywhere from 4-10 weeks. I will have to have a new PICC line inserted in my left arm which will be used for continuing the IV antibiotics at home, but they cannot put it in until they have blood cultures which haven't grown anything in 24-48 hours, and those were just taken this morning.

(I know this is a lot of detail, so if you're not interested in all of it, just skip on down.)

Tomorrow they will do another ultrasound of my right arm to see if the abscess is still present. The most challenging hurdle that is awaiting me is what to do about nutrition. It is not advised to return to TPN feeding through the new PICC because of the risk of continued infections, so they would like me to have a J-tube placed asap and begin tube feedings as my source of nutrition. This is the way I was fed for over a year but I had it removed this past August because I was no longer tolerating it.

So basically, I don't have any "good" options. To return to TPN presents large risk, and it was only meant to be a temporary measure in the first place. To return to J-tube feedings could mean it could fail and/or present a large amount of pain/symptoms, not to mention that my body hasn't had anything in its GI tract for over six months now. The doctors are waiting on me to give them the go-ahead to schedule the procedure to place the tube, and depending on how all that goes and what happens with my blood cultures and PICC line placement for antibiotics will determine when I am actually released.

So right now, prayer for faith to move forward with a decision would be much appreciated and if that is the J-tube (which is most likely) then prayer for a miracle that I could tolerate it without all the strange neurological symptoms I was experiencing this past summer would be even better.

I cannot tell you all just how amazed I am at how your prayers are carrying me through. I am definitely in tears from time to time, but even in the midst of questions and pain I continue to see God's power made perfect in weakness and experience blessing upon blessing.

This evening I was moved to a new unit and a single room which means that I may have a better chance of sleep. I also made a new friend from Brazil (Amanda :o) ), and I have wonderful nurses. Oh, and just before I moved to my new room I heard my roommate's husband reading her 1 Peter 1, and it encouraged me.

The way ahead is unclear and steep, but I have a Friend who knows the way and is the best possible Guide.

So grateful to Him for each of you!
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For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. - Romans 8:18

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Thursday, January 17, 2013

Hi everyone,

It has been a blessing to be in a private room, but last night sleep was limited to about 30 minutes due to all the goings and comings. God was gracious to give me the strength to go down for another ultrasound this morning and talk with the various doctors who came by today.

Praise Reports:
- The echocardiogram results showed that my heart was not affected by the staph infection.
- The second ultrasound from today showed that the abscess had decreased in size.
- My second set of blood cultures are not growing anything after 24 hours, so that's a good sign that the antibiotics were effective.
- I am thanking God I just made it through somewhere around 14 tubes (most large) of blood...wasn't quite prepared to give that much away right now. :)

This evening my antibiotic was switched to something a little less intense than vancomycin, and I was told that I would be on it for at least four weeks. Right now infusions are every four hours, but I am hoping that this could change when I go home, as it's definitely a bit difficult to do an infusion six times a day/night.

Tomorrow, I am scheduled to have a J-tube placed at 2pm, and they will start feeding formula shortly thereafter. If the team who places the PICC line for my antibiotics is available tomorrow then they will do that as well, and I could be released Saturday, but it is looking more likely that they won't get to me until Monday. We'll see....

So, that's where things are at right now. Today has honestly been one of the most challenging due to the lack of sleep and intensity of my ongoing symptoms. It has been difficult to face the reality that tomorrow means going under for a procedure and a return to 24-7 continuous feeds, being attached to a pump, having formula that makes me sicker and that my body doesn't do well with, and I would go on, but I am choosing to stop myself here because I'm realizing that dwelling on any of these things and on the possibility that this won't work is not going to bring faith or life. It is true that it may not work or that it may be extremely difficult, but it is even MORE true that God is greater than ALL of this, that He knows exactly what He is doing, and that it is ALL working out according to His perfect, perfect, perfect purposes and plan. I am speaking this to myself right now as I type these words.

Thank you so much for your continued prayers. They are holding me up even as I am stumbling along in this darkness. So grateful that He knows the way that I take, even if I feel completely blind right now.

There is more I could say, but I know these posts are turning out to be quite longwinded, so I will try to wrap it up. I'll end with the positive, how's that? :)

I was so blessed this afternoon by a visit from my pastors and friends, Braden and Isaac, along with dear Helen. And Paula also drove all the way up to see me and helped me find chairs for everyone. They made me laugh, read Scripture, prayed for me, and hung up my white icicle lights on the wall. Helen took me on a walk and gave me a shoulder to lean on. Then my parents came by later in the day even though they had so many other responsibilities. Amanda, my new friend, stopped by to say hello on her way out, and it was so nice to see her. My nurses have been very gracious and kind to me, and I ran into the husband of my previous roommate in the elevator today and got to thank him for reading 1 Peter last night. There are ALWAYS evidences of God's care all around if we just look for them. Keep reminding me of that when I fail to do it (as I was doing at so many points today). :) Thank you, friends! God is not finished yet.
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For God alone my soul waits in silence;
from HIM comes my salvation.
He alone is my rock and my salvation,
my fortress; I shall not be greatly shaken. - Psalm 62:2