Procedure Tomorrow

Hello friends,

God was so faithful today. Thank you for your prayers. My parents and I headed up to Hopkins at 7am and made it there in time for my fluoroscopy at 9am. The study didn't take very long, and it confirmed that the j-tube is in the wrong location - my stomach and not my jejeunum. :) This explains in part the increased amount of stomach pain and symptoms over the past few weeks. 

We met with my doctor, and he scheduled me for a 2pm procedure tomorrow to have the tube repositioned. He plans to fasten it in this time so that it doesn't pull back up at any point. He also agreed to start me back on TPN for the time being while I also continue to use the j-tube (for more details, see the post prior to this one). I got home just in time to hop back into another car and make it to the second half of my PT appointment in Frederick. Then I was able to spend some time doing errands with a few friends.

As I mentioned in my blog post yesterday, the path ahead isn't completely clear or encouraging, but I have so much to be thankful for - in particular, a gracious God who gave me the strength to get through today and provided clarity on the next steps to take. I have been greatly encouraged hearing about all those who continue to pray for me, especially at the times I am most discouraged or just don't want to keep fighting. He always knows what I need.

Thank you all for praying for my procedure tomorrow. I arrive at 12:30, and it should take place at 2pm. It should be fairly simple, but I never enjoy going under. I am sure that He will carry me through once again. Didn't get too much sleep last night, so hopefully, tonight will be a bit better.

I am going to need much perseverance and strength to return to TPN while also trying to work on the GAPS diet through my j-tube, but there is always hope in Jesus.

Love you all.
------------------------
"Be still and know that I am God." - Psalm 46:10

Hopkins Tomorrow Morning & TPN Again?

Hello friends,

Early tomorrow morning I'll be heading up to Baltimore for a "PEGogram" to determine the actual position of my peg-J tube. Ever since the tube was placed this past January, it has been a constant battle not only to find a formula I can tolerate but also to simply tolerate running anything through the tube. Whenever I do, I experience pain, shortness of breath, and a number of strange neurological symptoms. This is what happened last summer and was the reason I moved to TPN (arterial feeding through my veins) this past August. It seems that the peg-J tube was either not placed in the correct location or became dislodged, so this imaging test will give a more definitive picture of where the tube is presently positioned. After the 9am imaging, my parents and I will meet with my doctor at 11am to discuss the results and decide whether to schedule the procedure to reposition the tube. We will also discuss whether to return to TPN as the main source of my nutrition/caloric intake.

At the moment, I am continuing to stay on my feeding pump and do all I can to take in homemade formulas, but my weight has been gradually slipping.  I cannot tolerate an increased flow rate on my pump or running my feeds more than 14 hours at a time. Returning to TPN is one of the last things I want to do for a number of reasons:

• The high risk of a bacteremia infection (1 in 6) which is what put me in the hospital this past January and on the subsequent month-long course of IV antibiotics.
• Having to rely on "chemical nutrition" in my bloodstream and also lipids which are difficult for the liver to process.
• Having to take in corn dextrose again (my body is highly intolerant to this).
• Running it for 12 hours at night and disrupting sleep.
• How sick it makes me feel.

And I could go on, but there are also hopeful things with this approach. This time around, I would seek to use my GI tract while I am on TPN, and do my best to work with a nutritionist in Alabama who would be helping me implement elements of the GAPS diet which seeks to heal the lining of the gut. I would hope to do this through my feeding tube and possibly small amounts by mouth as well. We have also been told that the liver can function better on TPN if you are still using your gut in some way.

My doctor still has to approve these things tomorrow, but for now, this is where it looks like things may be heading. It does sound feasible and worth trying when you lay it out there, but I would not be honest if I didn't acknowledge that there is no guarantee that this path will be successful or most likely will not bring quick results. One other new development is that (through the incredible generosity and kindness of friends) I have also recently seen a new doctor who is running tests for adrenal/thyroid function, along with some of the Lyme coinfections such as Bartonella and other bacterial/fungal issues. He believes that addressing my adrenal/thyroid function could make a difference in my motility issues, and he is also concerned that I take in omega 3 for brain function. I still have a bunch of labwork to do for him and would be grateful for prayers that we would be able to get the necessary amount of blood drawn which has been quite difficult lately.

And so, I am grateful that there are still specific things to do and try in order to keep fighting for progress and some kind of breakthrough, but even so, there is not a clear path to success or healing laid out before me. I continue to desperately need the strength and wisdom of the Lord for each step.

Thank you all for each and every prayer. I could not do this without you. You are God's gifts to me in a very dark valley. It is amazing how He always has people pray at just the right times. Each moment is incredibly difficult right now, but the hardest times usually come as the day progresses (the longer my pump has been running) and into the evening. I will be having a blood draw done at 4pm today and then to recap, will be heading to Hopkins early tomorrow morning for the imaging study.

So grateful He is in control!

------------------------------------------------------------------------
Show me the right path, O Lord; point out the road for me to follow. Lead me by your truth and teach me, for You are the God who saves me. All day long I put my hope in You. Remember, O Lord, your compassion and unfailing love, which You have shown from long ages past. - Psalm 25:4-6

FB Update from February 25th

Hi friends,

God has been so kind. The waters are deep and the way ahead unclear, but I have been blessed by His continued sustaining help.

Today is a big day. Have had calls and emails in to my Hopkins doctor since last week to ask him to reposition my jpeg tube so we can discover whether proper positioning will make a difference in the severity of my symptoms and ability to tolerate the feeds or not. It is looking like I may need to return to TPN with the PICC line I still have in my left arm because I am just not able to take in enough calories through my feeding tube at this point. My mom has heroically been making experimental homemade formulas out of everything from kale to rutabagas, and I have continued to try prepared formulas, but it's incredibly difficult to endure the feeds. By the end of the day, it can be near unbearable, but there has been grace to keep fighting.

I don't know if my doctor will agree to TPN because it means returning to living with the risk of bacteremia/sepsis again and just isn't good for the body by any means. I honestly don't want to even think about starting it again, but the hope is that I would use that to gain weight while trying to take in smaller amounts of healing broths/nutrients through my tube with the goal of restoring healthy gut function (that is my non-Hopkins nutritionist's hope). I am also praying that if there are other tests that should be run, that I would be shown through another doctor, etc.

And so, we will see what this week brings. I wish I could make the tube work but it's just not improving. Thank you for each prayer. It has helped me endure this far. If I try to figure it out or think about what will work I am quickly on the edge of despair, for there is really no hope in the natural. But praise God that He is not limited by any of the "impossibilities" before me!

I thought the story would be different by now, but He's still on schedule. One day I will be free. I don't know if that will be tomorrow or 50 years from now, but that day WILL come.

So grateful for each of you.
------------------------------------
For God alone my soul waits in silence; from Him comes my salvation. He only is my rock and my salvation, my fortress; I shall not be greatly shaken. - Psalm 62:1-2

Recent Updates from FB

Saturday, February, 9, 2013
 
Hi everyone,

I'm sorry it's taken so long for me to update. It's just been so difficult to get through the moments these days. Thank you for your prayers for my appointment at Hopkins last Wednesday. God gave me the strength I needed to talk and go through that time.

My doctor believes that my x-ray from my last day in the hospital shows that my j-peg tube is not in the correct position but he is not concerned even though it is further up than the intended and ideal location. This is difficult for me because moving the tube further down could possibly decrease some of my symptoms and make it more functional or it might not make much of a difference. At the moment, I am not sure what to do, so I am praying about it and trying to move forward.

My antibiotics will finish later this coming week, and he said I could have my PICC line removed at that point.

The biggest challenge I am presently facing is finding a formula that my body can tolerate and fighting through how sick it is making me. Over the past few weeks I have been experimenting with homemade formulas with the help of a nutritionist outside of Hopkins. I am so grateful for her knowledge, ideas, and the ways she is trying to help me, but neither one of us know what will really work in a j-peg when it comes to the functional side of things. It has been so good to be off of the canned formulas that are full of all the things that I am either allergic or intolerant to and from which I haven't been able to absorb much nutrients. But the "experimental formulas" just aren't working for me either. They consist of lots of oil and sugar (in the form of either corn-free dextrose, agave, or honey) along with amino acids, gelatin, and various supplements. None of us are food scientists, and we haven't been able to find a way to get the oils emulsified well and are continually running into difficulty with the tube clogging either due to supplements clumping or a change in temperature from a cool room or just going to the car.

I've been so blessed to not experience much nausea over the past few years (amazing) but now it is almost a constant companion, and I am hitting a wall as to where to go next. None of the options look pleasant - trying a canned formula again that makes me sick, returning to TPN, or coming up with another type of homemade formula that won't clog the line and pray I can tolerate it...not sure where to go and am so weary of trying to figure it out.

I have other updates on new doctors and things that have happened over the past few weeks, but I will have to save them for another time.

I'm sure this was much more information than most of you were looking for, but I'm not too good at simplifying things. :) I would be most grateful if you could pray that God would lead us to a next step and make a way for something I could begin to tolerate. It is so difficult to press on right now.

So grateful for each of you! And I am so grateful that I have a God Who is much BIGGER than all of this! My faith is small, and my hope is flickering, but He can sustain it.

Thank you for praying.

Saturday, February 8, 2013
 
"I know that You can do all things, and that no purpose of Yours can be thwarted." - Job 42:2

And those who passed by derided Him, wagging their heads and saying, "You who would destroy the temple and rebuild it in three days, save yourself! If you are the Son of God, come down from the cross." So also the chief priests, with the scribes and elders, mocked Him, saying, "He saved others; he cannot save himself. He is the King of Israel; let him come down now from the cross, and we will believe in him. He trusts in God; let God deliver him now, if he desires him. For he said, "I am the Son of God." And the robbers who were crucified with Him also reviled Him in the same way. - Matthew 27:39-44

He had all power, yet He surrendered it. For us. He stayed upon that cross. He knew the glory that would come from the most horrific suffering ever known...welcoming us into His glory. He stayed. For me. For you.

I know He could rescue me tonight from this suffering. But He hasn't done so yet. I don't know why that is, but I do know that NO purpose of His "can be thwarted," and if He brought beauty and glory and life for millions out of the death of His own Son then I can trust Him to bring beauty out of my pain and questions and heartache.
 
Wednesday, February 7, 2013
 
Dear friends,
I'm on my way to a 1pm follow-up appointment with my Hopkins doctor right now. In need of much strength and grace for discussing where I'm at right now and if there's anything to be done about the current placement of my tube. Thanks so much and I'm sorry for the lack of updates. Been very sick lately but God is faithfully keeping me. Grateful for you all.

"The Lord is my strength and my song. He has become my salvation." - Exodus 15:2

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.
------------------------------------------
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!
--------------------
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.

----------------------------------
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