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
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
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