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...