Tales From an Exhausted Medical Mama

  Elevated sodium levels can cause brain swelling. Although CT scans and a MRI were done and didn’t show anything newly abnormal, Mini Mayhem’s sodium level being so high did affect her brain. Since her sodium level is now normal, her respiratory issues (pneumonia) have improved we are now seeing the neurological consequences. Her second night on the floor from PICU she had an increased heart rate, increased respiratory rate, sweating and agitation. For this reason, she was transferred back to the PICU. After receiving valium, she continued to have these symptoms and received a dose of dilaudid (a pain medication) and she finally calmed down. This happened one other time in the PICU. She was then sleeping most of the time, so they moved her to IMCU (Intermediate Care Unit) and she continued to just sleep. Yesterday, we moved to the Neuro floor and last night she became agitated, respirations and heart rate increased and she was sweaty. Thankfully, ativan calmed her and she has be...

  Moved to IMCU on Day 16 and we are still here. I think they are going to boot us to the floor tomorrow but that isn’t set in concrete. 💤Maci slept about 90% of the day yesterday and when she was awake, she just stared off in one direction. I kept checking to see if she was having a seizure but she wasn't, she was just starring in that one direction. She did have a seizure this morning, a bit before 2 am and the rescue med stopped it.  😴 She has slept 99.9% of the day today. 💦 She is still hanging on to urine, not all of it but most of it. 🧪Kidney labs and electrolytes look decent now. Her BUN is still elevated. It either needs a bit more time or she needs more water. I am going to ask about more water tomorrow. 💊 She is back to getting just the medications she is on at home with exception to still receiving the blood thinner from having the DVT (blood clot) in her arm. 🧠 The EEG that she had most recently didn’t show anything new that wasn’t on any other past EEG. 🫀Sh...

I know the game isn't over but we say Roll Tide regardless. I went home to sleep last night. I thought I would pass out as soon as my head hit the pillow but my mind didn’t allow it. I hated being away from my girl but knew she was in very capable hands with her Daddy. He’s likely to act my maiden name quicker than I would if you mess with our girl. 🤣🤣🤣 Oxygen is still being weaned (decreased) daily. She is on 12 L 27%. Her oxygenation will decrease 88-89 on occasion but that seems to resolve with the RT (Respiratory Therapist) suctioning her. 90 and above oxygenation is good but 95 and above is even better. Below 90, you need to evaluate what’s going on. She had a fever around 11 am and a seizure that stopped quickly after rescue meds. She hasn’t had another. Because of the random fever they are doing blood and urine cultures again and started an antibiotic. I am not a big fan of restarting antibiotics because I don’t want her to become antibiotic resistant and her white blood...

She was moving her arms and legs more this morning. It was usually when she was agitated. Since this morning, she hasn't moved around as much and she is still not waking up. She is still on high flow oxygen for her breathing (tachypnea and she will also desat). She has so much mucous and congestion, but it is slowly improving. She is still getting breathing treatments, cough assist and chest pt. She is also still hanging on to her urine. She will pee but she is holding on the majority and having to be cathed every 6 hours to empty her bladder. They will get an average of 550 mL each time (that's 18.5 oz). Her labs look good. 👍 Sodium 141 (normal range is 134-143) Potassium 3.4 (3.5-5) This is a tad low but is much better than the 2’s that she had been in. BUN is down to 21 (normal 8-21) - kidney related lab. Creatinine 0.64 (0.2-0.7) Her normal baseline is at 0.6 so she is close to what her norm is and this is also a kidney related lab. Karla is looking good. Albumin 2.7 (norm...

Sodium 153 ⬇️ (good) I expect by the end of the day tomorrow that it will be in normal range. Potassium 2.9 ⬆️ (good) Magnesium 1.5 ⬆️ (good) Kidney lab - Creatinine 0.69 ⬇️ (good) WBC 11 (White Blood Cells) that can indicate infection are down to normal now too! (Good)  MRI did not show anything a previous MRI didn’t always show; there was nothing new. They were checking to see if she had had a stroke and she has not.  Ultrasound of her swollen arm and hand - “Positive for new occlusive right radial vein DVT.” They increased her blood thinner, heparin, from a prophylactic dose to a treatment dose.  She opened her eyes when she was down for her MRI and again this evening briefly. Rick went to MRI with her and she started getting upset and her heart rate increased but calmed down once he played TN Whiskey on his phone. (Thanks for always calming my kid Chris Stapleton.)  That’s the latest. We’ve continued to have great nurses and great Respiratory Therapist. 🙌🏻

Happy 14th Birthday to my girl today!!!! 🎉🎈🎉 Kidney labs are moving in the right direction. (Creatine 0.83, now 0.73 and her baseline is 0.6) Sodium (160) moving in the right direction. Potassium (went from 2.6 to 2.4 now 2.2!) moving in the wrong direction. They need to raise that without causing diarrhea again like it did with the potassium mixed with the IV fluids. She’s currently getting it IV through her central line. The EEG for the short time she was monitored yesterday didn’t show anything abnormal. Another CT was done and it was unchanged from the one done 3 days ago.  Chest X-ray showing pneumonia. I think that once she is more alert and able to cough, that will improve. Meanwhile she’s getting breathing treatments, chest PT and cough assist. All those things help loosen secretions, encourage cough and suction to get rid of the “junk”.  Last night she opened her eyes (not wide but some) and was blinking. She also blinked with her eyes closed too when I called her...

She  has still not woken up, and she still does not gag when they suction her. Her respirations have increased as well as her work of breathing. They have her on 35% oxygen by mask at 8 liters. They are doing an EEG and will begin monitoring her soon and will continue overnight to look for any changes during monitoring or changes from previous EEGs. They are trying to rule out blood clots in her brain and a stroke. Normally they would do a CT of the head with contrast to see more but contrast can be rough on the kidneys and they do not want to cause additional trauma to her kidney. She will have a MRI in the morning unless her symptoms (heart rate continues to drop) indicate a need for a CT tonight without contrast. She is on a very small dose of heparin to prevent clots since she got a central (PICC) line yesterday. Her eyes are equal and reactive, she has raised and moved both arms today and she does respond to pain, which are all good. She has not had any additional, visible sei...

  I like to post longer/long updates here because let’s face it, no one wants to read a two-page status update. This way, if someone wants to read this, they can or otherwise keep scrolling Facebook.  Last year Mini Mayhem was in and out of the hospital three times. Twice, she had UTIs and we learned that she has Grade 4 vesicoureteral reflux which is currently stable and she is being followed by a urologist in Alabama. She had a renal ultrasound in March of this year to follow up and all was well with exception to it showing a possible 5 cm ovarian cyst. Her urologist wanted to follow up with a pelvic ultrasound at our next trip to AL in July. The results showed the cyst had increased in size to 6.8 cm. The urologist referred her to a general surgeon which she sees September 2. We should find out that day if the cyst will require surgical intervention. Typically, cysts will resolve on their own but to not go into detail, her’s likely will not. She has an appointment tomorrow ...

  Happy Birthday! Another year has rolled around, and here I am, wishing you another heavenly birthday. I can only imagine the celebrations you're having in Heaven. Thanks for leaving us with some unforgettable tales and memories. May the angels be serving you all your favorite drinks and snacks. If anyone deserves an amazing heavenly celebration, it’s definitely you!  Cheers to love that never fades and laughter that echoes through the stars! You are SO missed.  At bedtime, I will give Mini Mayhem one of her favorites, powdered donuts in honor of your birthday. We will cheers to you with 🍩s! I know you continue to watch over your boys as well as your entire family. I hope they feel and see your presence regularly in things that remind them of you. 💜 I continue to wait my turn but save me a seat !

Police officers are going to jail for committing crimes. Parents are kidnapping and killing their children. People are road raging, shooting at cars and killing people. Doctors are committing crimes and losing their license. Teachers are being arrested for having relationships with students. There’s been an increase in juveniles committing crimes that result in them being tried as adults. There is always someone in the news being arrested and or convicted for all types of crimes against children. People are spewing hatred online for one another, for the government, for the United States of America. When you consider the endless barrage of bad news on social media and the 24 hour news cycle, you can almost understand why people are just a little more jaded and unkind than they used to be. HOWEVER, just because you see all this injustice and suffering doesn’t give you a free pass to be rude or unkind to others. In fact, treating people poorly only adds to the problem. We can be passionat...

The new Tyler Perry movie on Netflix, Straw, is 500 stars. ⭐ TRIGGER WARNING:  To all the medical 🩺💉🩹🧪🩻🌡 Moms out there, it can definitely put you in your feels. I was still crying an hour after the movie ended. I will also say, if you have lost, nearly lost, or been at risk of losing a child, it can be extremely triggering as well. As a medical Mama, it was heartbreaking for me to watch because of the relatable aspects but I still say it is an incredible movie .  It is real. It is raw. It is genius. It is heavy. It is sad. It is triggering. It is superb.  I think it is the best movie that Tyler Perry has ever made.  The entire cast is great but the three characters that stood out for me are: Taraji P. Henson deserves all of the awards for her portrayal of the Mom, Janiya. She totally elevated her character in the movie to a whole new level and brought it to life, real life. As you watch, you really feel the weight of her personal struggles. She ...

Mini Mayhem is nearly an entire adult in height. Obviously, she does NOT get that from me. She has had a twin sized Sleep Safe bed since she was 2 years old and it has been a lifesaver. Potentially, literally a life saver. We tried the toddler, mesh bed rails for a bit and because she is as strong as an ox, she moved them down toward the foot of her bed. One day she moved it enough, scooted up to the top of her bed, and had worked herself partially off the side! Thankfully, she didn't completely fall out of the bed. To not sit up, crawl, or walk, she can sure get to where she wants to go in her bed or in the floor. #mayhemonthemove She has gotten so tall that she has started kicking and throwing things in her bed. She also rolls herself over with her face touching the side of the bed. The sides are padded but she smooshes her face against the side and falls asleep. Although her breathing is SO much better since having her tonsils out last year, it still makes me nervousssssssssss f...

                                                      Despite the negative reputation that politicians receive, it's important to remember that there are indeed good people in politics. These are the ones who enter the political arena not for personal gain or power trips, but out of a genuine desire to serve their communities and make a positive impact. These individuals may not always make headlines or grab attention, but they work tirelessly behind the scenes to make positive changes and advocate for those who are marginalized or disadvantaged. These good people in politics are driven by a genuine desire to serve their constituents. May their integrity shine brightly amidst all the chaos of Capitol Hill. My previous post was about the absurdity I was experiencing with Medicaid and my unsuccessful attempt to get answers relating to Mini Mayhem. After th...

Is there a veil of secrecy purposely draped over Medicaid?  I believe the government-run bureaucracy delights in making things as complicated as possible. It’s like trying to translate hieroglyphics wearing a blindfold and using a broken calculator. Need to know if a specific service is covered? Good luck navigating through a maze of automated phone menus, hang ups, conflicting websites, and unhelpful employees who seem to have all graduated from the School of That’s Not My Department. I have looked at countless websites and read numerous brochures and PDFs to the point that my eyes have glazed over. The lack of transparency and clear communication from Medicaid only adds insult to injury. After 3 days of grappling for even the most basic information that should be readily available and no returned calls; I waved my white flag, gave up, and emailed 2 State Senators. There is a myriad of waivers and programs that cover specific services, some that cover several of the same services ...

No, it is NOT so EPIC at Le Bonheur. While I did take a break from all of the nonsense spewed from people passing me from one place to another, I do believe that TODAY I was able to complete what I needed to access Mini Mayhem's patient portal/medical records at Le Bonheur. Now mind you, I was passed from one MyChart tech person to medical records and then back to MyChart tech support because nahhhhhhhhhhh, it just can't be easy. I even asked the MyChart support person why she was sending me to medical records. Actually, I asked, "what is medical records going to be able to do?", and she just said she couldn't add physicians to the portal. Guess what? Medical records can't add them either so she was passing me off! I swear they want me to flip tables. The second support person had me sign up for access like I never had before,  using a different log-in and complete the proxy form again since I am not Mini Mayhem herself. Only time will tell (72 hours to be sp...

  Honey Butter Skillet Corn Ingredients: 2 TBSP butter 2 TBSP honey 1 16oz bag frozen corn 2oz cream cheese cut into chunks 1/4 t salt 1/4 t black pepper Directions: In a skillet, melt butter and honey over medium high heat.  Once meltes, add corn and cook for 5-8 minutes, stirring occasionally until the corn is cooked through.  Add cream cheese chunks, salt and pepper, stirring together and cook 3-5 minutes. Stir to mix the cream cheese until it is melted and the mixture is well combined. Serve immediately. 

  Jalapeno Popper Chicken Casserole Ingredients: 8 oz cream cheese 8 oz sour cream 2.5 lbs of rotisserie chicken - shredded 1 small onion - chopped 1C shredded cheddar cheese (1.5C if you like things cheesey) 2 jalapenos - diced or 1 4oz can  (Optional: add one more sliced for garnish) 6 slices of bacon (or 2 packets of real bacon pieces) 1 26 oz bag frozen hash browns Directions: Preheat oven to 350 degrees If using sliced bacon, cook, crumble and set aside. Add onion to bacon grease (or 1 TBS olive oil if not using sliced bacon) and cook for 5 minutes Mix all ingredients together saving 1/2C of cheese.  Add to casserole dish and bake for 1 hour - 1 hour 15 minutes. Add remaining cheese to top in the last 10 minutes of backing.

Freezer friendly chicken marinades.  Fajita Marinade: 1 – 1.5 lbs. boneless skinless chicken breast 1/4 cup olive oil 2 tablespoons lime juice 1 tablespoon rice vinegar 1 teaspoon chili powder 1/2 teaspoon ground cumin 1/8 teaspoon smoked paprika 1 teaspoon garlic powder 1 teaspoon minced garlic 1/4 teaspoon salt 1/8 teaspoon ground pepper Lemon Garlic Chicken Marinade: 1 – 1.5 lbs. boneless skinless chicken breast 1/4 cup olive oil 2 garlic cloves minced 3 tablespoons lemon juice 1/2 teaspoon ground mustard 1 tablespoon fresh dill 1/2 tablespoon rice vinegar 2 teaspoons honey or maple syrup 1/4 teaspoon salt BBQ Chicken Marinade: 1 – 1.5 lbs. boneless skinless chicken breast 1/4 cup olive oil 1/4 cup BBQ sauce 1 teaspoon chili powder 1/2 teaspoon smoked paprika 2 cloves garlic minced 1/2 teaspoon salt 1/4 teaspoon pepper Honey Mustard Chicken Marinade: 1 – 1.5 lbs. boneless skinless chicken breast 2 tbsp extra virgin olive oil 1 tbsp lemon juice 1 tbsp honey 1 Tbsp dijon mustard 3...