New Appointment Tomorrow Morning

Hi friends,

I'm sorry for the long pause in updates again. I have been so grateful to be out of the hospital for the past three weeks, but my symptoms have been so severe that it has often been a moment by moment endurance battle.

I have not yet made a decision about the surgical j-tube and still need to learn more about it. I continue to receive my nutrition through nightly 12 hour TPN which has been very difficult. It has been a nice blessing to not be connected to anything during the daytime, though.

Tomorrow morning, I leave the house around 7:15am for a 9am appointment with a new motility specialist at Hopkins. I would be grateful for prayer that God would give wisdom through this appointment and strength to communicate clearly and know what questions to ask.

Depending on the outcome of this appointment, I am seriously considering going to the Mayo Clinic there are several more pieces yet to fall into place before that can be determined. I hope to have more clarity through the course of this week.

God has been helping me sip a few ounces of chicken broth each morning for the past week, and I am fighting to continue that and eventually increase. Right now, it is not working too well, but I'm able to get it down, and I am grateful.

It has been wonderful thinking this Easter weekend on how much hope we've been given in Christ because of His death and resurrection. One Day all this will end, and my body will be able to eat, and drink, and run, and dance, but until that Day, I want to grow in trusting Him more and loving Him more than anything else in this life.

Thank you all for your prayers. They have been a constant source of sustaining power.

Grateful.

Home Tomorrow?

Hi friends,

Thank you so much for praying for me today. My parents came up to be a support, and we spent most of the day waiting for my doctor to meet with us. He eventually did late this afternoon and said that he would like me to have a j-tube surgically placed. This is different than what I have had before. All of the prior procedures have been done by endoscopy and have not required sutures, a surgeon, etc. He says that my anatomy has changed and the tube being threaded down through the stomach and into the jejeunum is no longer working even though he tried to anchor it in with clips this past Thursday.

I need some time to pray about this and learn a little more before moving ahead, so I let him know I wanted to wait. In the meantime, he plans to pull out the messed up tube tomorrow morning at 8:45 and replace it with a G-button which will still give me access to my stomach. I will be going home from Hopkins on TPN for my nutrition again. After a few days of cycling, I just reached my regular night cycle of 12 hours last night.

Apparently, one of the reasons I felt so much sicker following the procedure last Thursday was that my doctor had so much trouble trying to get the tube to stay down where it was supposed to be, and it required more anesthesia and jiggling around. At least there was a reason for why I felt that way!

The past few days have been especially challenging as I have had the tube taped up and not functioning, while trying to adjust to the TPN again and fight through escalating symptoms and pain. Through all the desperate moments, God has not failed me, and He has sent the help I so desperately need. Sometimes it doesn't feel like that, but He never allows me to utterly sink beneath the waves.

So tonight, I need rest and then courage to continue to walk ahead after being discharged tomorrow. No one wants me to stay on TPN again. The risks are high, and I feel awful on it, but it keeps me alive. I will need wisdom to consider the j-tube surgery and if so, whether to have it done at Hopkins, etc. It is hard to think about going through with it, knowing that there is no guarantee that it will be successful on the other side, but if it was successful, it would be better for me than TPN.

All that to say, I have constantly been longing for freedom from all of this and am no hero. I don't want to keep fighting. I just want it to be over. I want to be free. It IS more than I can take. But it's not more than HE can take. He can enable me and promises to never stop doing it. Thank you for helping me not give up again and again.

So grateful. I love you all.
--------------------------------------

"For NOTHING is impossible with God." - Luke 1:37

Unexpected Things

Hi friends,

I learned upon waking yesterday that I would have to be admitted to the hospital following my procedure so that my electrolytes and things could be monitored once TPN was restarted. I hadn’t anticipated this, so it was definitely a struggle for me. I felt so sick that I couldn’t imagine going through a procedure and then staying in the hospital again with no sleep and all of that fun stuff, but God was merciful and gave me the power to take one step at a time. He is strong in our weakness.

I had a harder time with this procedure than anticipated or than any previous ones. For some reason, I was more nauseous, weaker, foggier, and in greater pain on the other side than I’d ever been before, but part of that was probably because they intubated me for safety and took some additional biopsies. I made it up to my room around 6pm yesterday. I have a sweet roommate with pneumonia who likes to eat and watch lots of TV, but I get to be near the window.

This afternoon I was still struggling a lot when my mom arrived and helped me go downstairs to walk around a bit. We had only barely escaped when my tube starting shooting out of my stomach at an alarming rate. We managed to push it back in most of the way and returned to the room to page the doctor.  When he showed up many hours later, he confirmed our suspicions that the balloon which anchors the tube inside the stomach was not inflated with water as it should be, and there was no way to be sure of the j-tube’s current location any longer. They had clipped the tube in place with three metal clips, but it is unlikely that they are still in place because of how far the tube came out. This is a temptation for anxiety in wondering where they’re at now. My doctor is presently out of the country, and the attending fellow said they will be discussing things, and then my doctor will decide what to do this coming Monday.

In the meantime, they have started cycling my TPN tonight. I will be on it for at least 24 hours straight, and then they may move the infusion rate up and the hours down a bit based on how I’m responding. There have been a number of differing opinions and some confusion regarding putting me on tube feeds while I’m in the hospital at the same time as the TPN, so that has been a challenge for me to work through today, but for now, I first have to just get through fixing the tube once again.

So, it has been tough. I have been asking a lot of “why” questions. Why a hard procedure that got me nowhere? Why do I have to go through it all again on Monday or maybe even something worse? Why all these hard symptoms with the TPN, too, that returned tonight? And the list could go on and on. But I don’t have to have the answers. I belong to the One who knows them all. His ways are higher than mine. He’s up to good things that I just can’t fully see right now.

That is the truth, but I need your prayers. I need hope. I need light in this dark place. I was encouraged by that theme today. God kept bringing up darkness and light again and again. The words of Psalm 18:28 that a friend texted me this evening have brought me hope when mine was almost gone – “You, O Lord, keep my lamp burning; my God turns my darkness into light.”

I am waiting in hope for His light to come in greater fullness. I may only have a tiny match right now, but I can trust Him to keep it burning when I can’t.