There and Back Again

Hi friends,

Thanks for being so patient with my lack of updates since Wednesday. The past few days feel like a whole week.

To start with, I'm home from the hospital again and grateful. Now backing up to Thursday morning...we decided to leave my PICC line in because it was still functional, and there was some concern about the possibility of dislodging the blood clot if the PICC were to be pulled out. After an iron infusion, a visit with the nutritionist who formulates my TPN, and my first Lovenox shot, I was discharged that evening. Diane Kummer and Patti Brown drove all the way up to Baltimore to pick me up which was so helpful for my family, as they have a number of medical needs right now.

I was told I would have to take Lovenox injections twice a day and then eventually transition to Warfarin (oral blood thinner) which I would stay on as long as I had a PICC in my arm. This presents a whole new set of challenges and mountains to climb, but I'm asking the Lord to give me faith that He IS ordering even these details for good. He knows how it will all work out.

I arrived home around 10:30 Thursday night and after my TPN had been running just a few short minutes both my lines completely clogged. They had been working fine a few minutes before, and I was at a loss as to what to do. I couldn't drink enough to hydrate myself and now had no dependable way to get in my nutrition and hydration. I also started experiencing a small amount of bleeding under my skin (a concern with blood thinners), so I had to call the doctor on call, but she said to just watch it for the present.

Friday morning I tried flushing the lines again but to no avail. My doctor's nurse told me I'd have to come back to the ER since having a clot added a greater risk to everything. So I started packing again, not knowing how long I'd be there.

God truly provided for me by giving me a triage nurse who used to be a PICC nurse and was able to work with my lines to see if she could get them working again. After several unsuccesful attempts, she put in another IV and sent me to x-ray. My mom eventually arrived, and we found ourselves in the exact same room where we had spent Tuesday night. The PA on the other side of the desk did a double take when she saw us. The nurse injected a declogger into my lines which did its work for an hour or so and after that the PICC was once again functional! She also helped me with my Lovenox shot, and we talked with the ER doctor about beginning Warfarin.

I was discharged once again, and my mom and I arrived home around 10pm last night. So grateful I didn't have to stay longer. Despite the drama of the past four days, this has actually been my shortest hospital stay yet.

Today I have had a difficult time getting myself to take my injections, but God has been so patient with me as well as others who have to bear with my emotional messes. Lately, it has felt like every time I start to make progress with something I hit another wall or fall off the horse again, and it's hard to believe I can keep going and find a way through all the added complications. Yet, somehow, in the midst of all this mess, God is here, and He isn't caught off guard or surprised by any of it. How can THIS be the plan? My heart asks this a lot, but He asks me to trust Him still because He knows the way, and He is the best Guide.

Thank you all for your prayers. I cannot thank you enough. They will continue to be such a help in the days ahead as I try to navigate through these stormy seas. It's a good thing I have a Captain who knows where to take me. Just pray I don't go kicking and screaming.

Love you all!

Facebook Updates from Hopkins

July 9, 2013 at 1:10am · I am in a bed in the ER but am still waiting to see a PA or doctor. In the meantime my g-tube decided to pop out so now we have to stick something in so the stoma doesn't close up until we decide what to do. I had a traumatic experience with this at Mayo so grateful for prayers.
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10 hours ago · Hi friends, thank you for all your prayers. I haven't slept yet and am getting ready to have my gtube replaced bedside. Prayers for this to be successful and not too difficult are much-appreciated. I'm on IV Heparin now but still waiting to hear about the PICC. My GI symptoms have been very challenging, and I've been teary but God is sustaining me. Thank you for praying.
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30 minutes ago · Thank you all so much for praying. The g-tube was not able to be re-inserted as too much time had passed since it came out so the stoma has begun to close and is no longer big enough to hold the tube. I could have a procedure to put it in again but I am going to hold off on that at the moment since it would require a new incision, etc.

Tomorrow morning the doctors will be meeting to decide whether or not to remove my PICC line or keep it in. Apparently there are some doctors who believe it should come out because of the clot and others who believe it is safer for it to stay in as long as I remain on blood thinners.They are running labs quite frequently to get me to the right therapeutic dose of iv heparin. Then when I go home I would have to initially continue with blood thinner shots until I could take enough of a blood thinner pill to transition off the injections.

At the moment, I am facing a number of hurdles...increased pain that seems to be connected to the heparin, no longer having a g-tube to use for venting, no sleep, the potential of being on blood thinners for the unforeseeable future, unsure if my PICC is still functional or not, unsure where my nutrition will come from, and the list goes on.... Much is unsure but there is also much that IS SURE. God has carried me this far, and I know He is not going to leave me now. He is my Hope.

Thank you for helping me be strong in Him when I have nothing left. I am just so aware of how much I need your prayers to hang on and persevere. Let's keep trusting Him! He knows what is BEST especially when I can't see the next step.
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"...my hope, LORD, is in You."- Psalm 25:22

“Blessed is the man who trusts in the Lord , whose trust IS the Lord." - Jeremiah 17:7

Heading to the ER

Hi friends, I'm on my way to the ER at Hopkins with a serious blood clot and my PICC line has to come out.

Prayer requests:
- Wisdom to know whether to put another PICC in the right arm (if I could eat and drink enough I wouldn't have to have it!)
- Grace for the removal of the clot, the blood thinners, etc.
- That they could also determine what's wrong with my g-tube and fix that.
-For a safe removal of the clot, peace, and wisdom for all involved.

Thank you so much! God knows just what He's doing and it will be for good.

Brief Updates

Here are a few Facebook updates...real posts coming whenever I can. 

July 1, 2013

Hi friends, Still coughing but getting through that virus. I've scheduled my first HBOT session for next Monday at 11:45. Praying I can go through with it and then do it consistently over the next month. I had a PT evaluation last week and plan to continue with that as well. Unfortunately, my g-tube accidentally got yanked last week and it may have become displaced. It has been giving me a lot of trouble ever since, and I may end up having to have it re-positioned. I'm still seeking clarity and direction on the next steps, especially when it comes to trying to get off TPN. I upped one of my meds the other day and plan to start another one this week.

There is much uncertainty, and I am so quickly tossed about, but God is an unshakable Rock. All else may shake and fall away, but He remains, firm, steady, immovable. My faith is small, but He keeps it. Thank you all for helping me press on again and again.

Today I want to thank Him for...the kindness of a friend who switched her PT appointment with me last minute when I was running late so I could still have an appointment. watching Epic with my sister, Tiffany. being reminded that we have a promise-keeping God. the assurance that nothing is wasted.

June 24, 2013

Well, this was going to be the week that I started HBOT treatments, new meds, and began focusing specifically on whatever I can do to get stronger. But I came down with a virus a few days ago and that has put everything on hold. Sometimes it seems like every time I try to implement a plan and press forward I have to go 20 steps backward first... you all have experienced this, haven't you? Right now it's quite discouraging, but I need to remember that it's all still going according to HIS plan, and His is so much better than mine. I can trust Him with all the setbacks, too.