This past week has been one of the craziest weeks… What it has been full of is a whirlwind of things:
- Two hospital admissions
- Two visits to the Emergency Department
- One allergic reaction to a drug
- An infection at the site of my PICC line
- A clot in my left shoulder area due to my PICC
- The beginning of my Lovenox injections
- Lots of Nationwide news
With all of these things going on, I felt that it was time to update everyone on this busy journey!
First thing first:NATIONWIDE! I need to go to Nationwide as soon as possible to get the colonic manometery for my surgery. This Friday we got the call from insurance that it is approved! My Mom then called Nationwide and pushed super hard for it to be soon. The folks over there were just so amazing, and they are trying to fit me in within the upcoming weeks. I am very hopeful for it moving along quickly. This is what is needed before we can even begin to address my gastroparesis, and it is needed since I am so distended and in pain.
This Friday I had a dressing change early in the morning. The whole week my dressing patch had been burning and itching. This was very unusual for me. When we removed the bandage, we were shocked at the sight underneath. My skin was blistered and full of raised bumps, some were even oozing.
After we saw this, we realized I could possibly be having an allergic reaction to my dressing. So we put back on the same kind that I had earlier, and planned on having a nurse coming back later that evening to put on an easier one. Throughout the day I noticed a sudden increase in pain around my insertion site. I was driving home from some school activities and saw a yellow pocket of discharge around my PICC and lots of redness. This immediately triggered an alarm for me. That evening the nurse came. The pain I felt as she removed the bandage and moved my PICC around was honestly almost unbearable. What was exposed underneath the dressing was very alarming. It was a red and rash-covered mess.
We took one look at it and realized I needed to go to the ED. So I got my dressing back on and grabbed my things. The funny thing was that as I walked in, I had over five different lovely people come up and catch up with me. After lots of visits there you get to know all of the doctors and nurses. I am truly so grateful for all of their compassion and love, they make everything so much easier. They really do prove the phrase “It takes a village”.
After meeting with the doctors, they decided I needed to get an ultrasound of my arm. The results were honestly very surprising. I have a blood clot in my left clavicle area. This was such a surprise since we did not come in for clot symptoms or anything. In fact, I have a bleeding disorder where my blood does not clot. Being that I am a pediatric patient with a newly found clot, they decided to admit me. It was such a long night for my Momma and I. While we got to chat with our favorite Resident Doctor and our amazing nurses, it was full of shots and pokes that left us with little to no sleep the whole night.
The next day we discussed an action plan. I will be giving myself the Lovenox (a blood thinner) twice a day to clear out the clot. The first time I did the shot it felt so foreign. To actually pierce through your tissue and feel it resist is odd. The skin is much tougher than I thought. And then to push a vial of medicine inside of your tissue and know that you are doing that… Abnormal stuff! After the first time though, it was no longer unnerving. I will be doing these for two weeks, and then having an ultrasound with Heme/Onc to check on the clot. We also did a dressing change with the PICC team and my team of physicians. This was the most painful experience of my line yet. They decided that I do indeed have an infection at the site. I am now wearing high risk dressing that has no adhesive to help my skin. This means no showers (hello sponge baths) and dressing changes every three days. My arm is very tender to move and I can feel the pain pulsating. We are going to decide tomorrow if I need to go back into the doctors office for it. If it is still causing issues and/or is painful, we will need to look at gaining access to another site and pulling this line. This is not optimal as each time we remove a line, it is another access spot lost due to the scar tissue that forms. I am hoping that Mr. PICC decides to perk up soon!
These shots are covering my abdomen in big bruises. It is rather challenging since I have such a swollen abdomen right now, I had to change my whole wardrobe, and now it is covered in bruises. This journey is not only a physical one, but emotional. I have had to watch my body as it morphs in front of my eyes. This is an aspect I have never really talked about much, but I know there has to be others out there struggling. Having no control over your appearance is frightening. At the same time, it has taught me how to embrace the little things about myself. It also makes me realize the importance of what is “inside”. With all of these things changing, I have myself still. I still strive to be loving and spread kindness, and that is what comforts me amidst these changes.
With all of these things going on I celebrated being home in time for my favorite holiday today, Easter. This morning at church I felt so much comfort. The sermon was spectacular and the worship music just lifted me up. I love my church family at FPC. It really does ease my fears knowing that Jesus was crucified so that we have eternal life. Knowing that after this magical world we go to heaven, which will give us healed and healthy bodies, free from ailments, brings me so much peace. He truly does love us and He fills our souls with hope during the challenging times. As I celebrated these miraculous things today, I also reminisced on last night. My AMAZING friends surprised me and all stopped by last night once I was home from the hospital. I haven’t felt that much joy and happiness in a while. It was so nice to gossip like a teenager and celebrate being back together. Life really is made up of the little things. The beautiful things. The treasures. My treasures are my family, friends, and faith. And for that, I am forever grateful.
Love and Hugs,