Meet Melvin 3.0

"Jesus Christ is the same yesterday and today and forever."
-Hebrews 13:8

     While on my vacation this past weekend my IV Pump (Melvin) decided to get a little weird. It would start beeping with an error code of "Error: Stuck 7 key" and wouldn't do anything unless I turned it off and then back on again. The 7 key was never stuck but this happened two times over the weekend. And then during class on Tuesday night it did it again. Except just turning it off and back on again didn't help. I had to take the batteries out while it was still running put them back in and then turn it off and back on again. This process happened twice during class. 

     That night I called the 24 hour Coram assist line. They connected me to the on call nurse who tried to walk me through troubleshooting it. Unfortunately, we pushed one to many wrong buttons and Melvin decided to just flat out quit. So the Coram angels got to work. They programmed a brand new pump and sent it out to me two hours later. At 9:30pm I made the switch, said goodbye to Melvin 2.0 and said hello to Melvin 3.0. 

     So far so good. I was able to connect to the new pump and restart my infusion without missing a beat. The courier took my old IV Pump back to the Coram pharmacy for me. I was extremely impressed on how quick they were able to help me fix the problem! Hopefully this new pump will last a little longer than the old one. 

With Love, 

Elizabeth <3 

I Went On An Adventure!

"The Lord himself will go before you. He will be with you; he will not leave you or forget you. 

Don't be afraid and don't worry." 

-Deuteronomy 31:8

     I went on an adventure.An actual adventure! I flew to Kansas City on Friday for a weekend filled with family and cold weather. Oh how I missed the cold weather. This was my first trip with Melvin the IV pump and my benadryl bags. 

     It was... interesting trying to get through TSA in Las Vegas. Prior to my trip I called the TSA Cares hotline (I highly recommend this if you are traveling with any kind of medical condition or equipment) the lady was extremely helpful and told me how to best prepare. She also notified the TSA supervisor of my flight information so they were expecting me Even though I have TSA Precheck they still asked me to take off my shoes and jacket. I then told them my backpack could not go through the scanner because a) it's attached to me and b) I was advised by my pharmacist that the benadryl bags should not go through the scanner.  They then told me everything except for the medical supplies had to go through the scanner. Which was false. I explained what the TSA Cares lady had told me. They went to find a supervisor who of course was training a new agent. The new agent was now in charge of my bag check and pat down. And she was 100% by. the. book. Every last item in my bag was pulled out and swabbed for any residue. After she cleared by bag she told me she had to see the PICC line site. As I went to remove the sleeve that covers my line she yelled "please put your hands where I can see them! Stop making sudden movements!" Which of course caused Metro officers to walk over ready to take me down. So that was fun. 45 minutes later I was FINALLY cleared from that miserable security checkpoint. 

     Southwest is seriously the most amazing airline when it comes to accommodating your needs. I notified them when booking my flights that I have severe allergies and would be traveling with medical equipment. I was able to preboard the flight to wipe down my seat and tray table and to introduce myself to the flight attendants. They were all just so understanding and kind. On my flight home from KC it was a pretty empty flight. One of the flight attendants noticed one of the passengers was wearing extremely strong perfume and of course this lady chose the row directly in front of me. The flight attendant told me politely that she thought I may want to move seats, I am so so thankful she was looking out for me. She also helped me change my benadryl bag mid flight and was genuinely curious about why I had Melvin the IV Pump. When we landed in New Mexico the flight crew switched and she brought the new flight attendant back to meet me and fill her in. I can't thank Southwest enough for everything they did to make this trip as painless as possible. 

     Missouri was fantastic and cold! Friday night I stayed at my cousin's house and then Saturday and Sunday I got my own hotel room. I came prepared with a bulk pack of handwarmers and lots of beanies! I was hoping for snow but all I got was ice, which isn't nearly as fun. On Sunday morning I got on the elevator to go downstairs for the continental breakfast. Well... we made it to the first floor but the doors never opened. We waited another minute or two and still nothing. We frantically pushed the door open button and nothing happened. So we called the front desk and were told it would be another 2 hours before they could get the elevator guy to come free us. My IV pump started beeping low batteries and I told the front desk lady that I didn't have any batteries on me and my medication would soon stop running. That was a slight fib, I had 3 sets of extra batteries on me but they didn't need to know that. But that worried them enough to call the fire department to come equipped with a crow bar to free us! Unfortunately, there was no continental breakfast left after we had been rescued. 

     I had such a fun time hanging out with family! I knew traveling would be exhausting and would come with a long recovery time but it was so worth it. I feel more confident now that I'll be able to live a somewhat normal life even when my body is rebelling against me. What adventures have you been on recently? Or what adventures would you like to go on? Hopefully there are more fun adventures in my future! 

With Love, 

Elizabeth <3 

All About Home Health

"God is our refuge and strength, an ever-present help in trouble." 
-Psalm 46:1
     

     With constant IV medication and a picc line comes with the delightful experience we call home health. Home health is hit or miss. You have to find the right company that fits your needs. My first home health experience was not a great one. The first time I was sent home with a PICC line I was sent to the home health company that was ran by my insurance company. They deemed me "not sick enough" for home health and made me drive across town once a week for a ten minute dressing change. They also refused to change my dressing for almost three weeks because they lost the paperwork and refused to get it straightened out. 

     This last admission when we were getting my continuous benadryl the insurance home health company refused to take me on as a patient again. They told me at home infusions were not possible and even if they were they would not give me the benadryl I needed. In walks in my current home health company. These angels worked tirelessly to get me home from the hospital on the benadryl infusion and have everything I would possibly need.

     My current nurse comes twice a week. Once on Monday to draw blood (this is fantastic because it comes straight from my PICC line AND I don't have to wait in line at quest). And then she also comes on Friday to change my dressings and draw more labs. She is seriously the sweetest lady and actually has another mast cell patient on her case load! Each visit takes between 20-50 minutes depending on if we have to change my dressing.

     The other component is my awesome pharmacist! She calls me once a week on Monday so I can reorder what ever supplies I need. She then sends all of my line care supplies and benadryl infusion bags overnight so I receive them by Tuesday morning. My pharmacist is fantastic! She's sent me supplies midweek when I forgot to reorder something, and when my UPS driver hid my weekly delivery a little to well, she stayed on the phone with me reading out directions the UPS driver left. 

     If home health is a big part of your care I highly recommend shopping around first. I am extremely happy with my team right now. Which part of your care team do you lean on the most? Do you have a home health company you love? 

With Love, 

Elizabeth <3