Finding joy in the midst of chaos

 

So I won't try to sugar coat it, this past week was awful! It started with Miss marvel, Noah's beloved pet hamster which we have only had for a month dying suddenly. This was my child's first experience with loss and it was so hard to see him in so much pain! My amazing Husband was able to help him work through some of the pain by putting it in comic book terms and relating it to Thanos and the Avenger's movies. ( Thank God) Noah also had a rough appointment at the Nephrologist where we found out despite high doses of Vitamin D, his levels are still insanely low and the reason he has such low energy and all over bone pain. He had to get another blood draw and completely melted down and it became an extremely stressful situation. He is suspected to be on the spectrum but the testing keeps getting cancelled or delayed due to covid. He has had 5 different hospitalists from 3 different hospitals think he is on the spectrum but getting it official will help get him more support an help in school and in doctor situations. 

Next we get a call that a family member that stopped by briefly the week before tested positive for COVID!!! Thankfully we live in Long Beach which has it's own Health department and we were able to get  in and tested same day and got NEGATIVE results within 48 hours! testing only took about 20 minutes total at a mobile clinic at out local park.

Now that you have that background I can go into my own issues. My oral intake had be slowly decreasing but I hadn't lost weight so my GI wasn't doing anything yet. My heart rate started getting higher and higher and I thought I was going into crisis again when it was staying at 150 while laying down. FYI it should be under 100 when resting, my normal laying down rate is 65. I went to my local hospital and the treated it like a crisis and gave me a bunch of steroids and fluids and it only brought my rate to the 130's they let me go but wanted me to check in with my endo the next day. That day was the day I found out I was exposed to covid the prior week. My Endo said to have someone drive me to UCI. I was rushed to a room and given an EKG right when I checked in. I was also swabbed for covid and  the flu right away. Had x ray, blood work, ultrasound for dvt and all sorts of things ran. my heart rate came down and then would shoot back up. They asked about my stress level and I explained I had had a stressful week but didn't feel very stressed at the moment. they tried a med that would help if it was stress, notta heart rate stayed high. The doctor asked about my oral intake because my electrolytes came back low and I showed signs of dehydration. The doctor then linked my tachycardia to dehydration and malnutrition and admitted me . The thought is I am in a pretty big Gastroparesis flare and need extra help right now. 

The admit from the er to the telemetry floor took hours and hours because the admitting physician was busy with people with covid not doing well. I feel so bad for all those people and so grateful I was not in their shoes. I was scared I had to be admitted and didn't want to be in the hospital right now any longer than needed. Thankfully the team worked hard and only had to keep me two night. It was decided I needed a medication to help my heart rate called beta blocker and that I also needed to go back on tpn and hydration. 

$2 at the dollar tree and my IV Pole I was not excited to have to use now brings me joy and makes me smile

Though that may seem like a HUGE step back I am not taking it that way!

1. It is not an NJ tube

2. I went 4 weeks on my own with no feeding or hydration support or a hospitalization 

3. This isn't forever

4. I can get this treatment at home near my family

5. Its just like when a bone needs a cast to heal and there is no shame in it.

Throughout all these rough times, some of which I haven't fully processed enough to write about yet, I have found by looking for the positives can help me cope. There is ALWAYS something good to be found if you look for it. It would be all too easy to give up and look at all the negatives, instead I choose to find all the tiny moments of joy I can. I know 2020 has been hard on everyone and this post is for all of you! Try and find moments hen you can of joy to hold you over through the tough ones.