Tales From an Exhausted Medical Mama

Twas the night before Christmas     When all through the house Not a creature was stirring Not even the adaptive mouse The stockings were hung with care by the chimney A truly awesome fine-motor-skills activity Maybe next year I'll grasp The figurines in the toy holiday nativity? Some children snuggled with weighted blankets in their beds While visions of gluten-free sugar plums danced in their heads And I, decked out in my noise-blocking headphones Had just settled into a very chill zone When out on the lawn there arose such a clatter I grabbed my orthotics to see what was the matter Away to the window I trotted on the floor Tore open the shutters—a range-of-motion score! The moon shined on the snow—dare I tread? Come to think of it, I deserve an adaptive sled! When what to my wondering eyes did appear But an accessible sleigh and eight tiny reindeer With a little old driver, so full of bilateral coordination and quick I knew in a moment it must be St. Nick More rapid t...

365 days around the sun. How can it be an entire year? There have been so many times that your memory has flooded my thoughts. I know the emotions that have accompanied my thoughts and can’t begin to fathom the rollercoaster experienced by others who were with you regularly or who had much more frequent conversations with you than I. My heart breaks a little more for those others, especially your three men and the rest of your family.  The cliche of “time heals” is malarkey. Time passes. Time moves on. Time doesn’t heal. Time passing doesn’t make things easier. Nerp. You are missed. Deeply. It’s apparent in the shared memories, the posts on your Facebook and I’m shouting it myself.  I know you are in heaven happy, oozing “Sarah-tonin” and I am still jealous of you walking the streets of gold (in case you were wondering). I continue to have your family in my prayers.  Don’t forget to save me a seat! 

Photo Courtesy of  Arthritis of the Knee - OrthoInfo - AAOS Today, I had an "an-knee-sthetic". 🤣🤣🤣 Ortho NP: Youuuuuuu have a lot of arthritis in your knee😟and you are bone on bone.  Me: Well, what are you gonna do about it? 🤣 Ortho NP: Welllllll, we can treat with injections and physical therapy initially until those don't work anymore and then we can get you a new one. I can give you a shot today. Me: 😲😲😲😲😲🤔🤔🤔 NP: Or you can come back, and we can do it another day. 🤷‍♀️ Me: No, I am in pain, let's do it today because it's not like I am going to have any less anxiety about it if I come back. NP: It really doesn't hurt, I've had one. Me: Well my friend who has had a double knee replacement said it was the worse thing EVERRRRRRRRRRR and she 'bout levitated off the table. ( Susan! ) NP: I promise, it's not that bad. Let me go get it ready. Me: Ok, but I can't look at that needle, I know it is going to take two of you to carry ...

I am posting updates here on the blog now for a few reasons. The main one being that my neck and shoulders stay tensed, and it causes numbness in my arms, hands and fingers. It makes typing things out on my phone painful and lengthy. It does not bother me to type on my laptop which is how I post updates here. It also allows me to easily go back and search for certain things, unlike on FB.   Our nurse retired at the end of April and despite beginning more than a year in advance to find a replacement or someone PRN, I had no luck. There were a few that were "interested" and a couple who actually followed up but never followed through. I would say I was disappointed, but it has become the norm for the younger generation. A lot of the younger people either have no work ethic or the inability to follow up and say they chose to do something else. They just leave you hanging and that is a huge pet peeve of mine. Please don't give me the "I would love to help you PRN to give...

Nephrology visit was yesterday, Thursday, 9/12 and Karla is happy . 👍 Mini Mayhem's iron supplement had to be increased due to her anemia and one of her anti-rejection meds was decreased due to a slightly elevated level. We will recheck the level here locally in a month.  She had her routine; echocardiogram, it was normal, and she won't need another for 3 years! Then she went for a renal ultrasound. I took a CD of the USs done at LB in July and August for them to compare (as they had requested).  Thankfully, we were worked in to see Urology on the same day and only had to wait two hours. I thought that was pretty ok.   At LB in July, we were told there was hydronephrosis. Hydronephrosis occurs when one or both kidneys swell due to a buildup of urine. One cause of this is a UTI which we know MM has had two, one in July and one in August. When she had the US at LB in August, I was told the hydronephrosis was resolved. Well, guess what.... IT IS NOT RESOLVED . The...

(This is just because I needed to save it somewhere and couldn't find this exact recipe to pin on Pinterest.) Street Corn Chicken Rice Bowl A delicious and flavorful bowl combining zesty marinated chicken, creamy street corn, and cilantro-lime rice. Perfect for a fresh and satisfying meal! Ingredients: For the Chicken: 1.5 lbs (about 4) boneless, skinless chicken breasts or thighs 2 tablespoons olive oil 2 tablespoons lime juice 2 teaspoons chili powder 1 teaspoon ground cumin 1 teaspoon smoked paprika 1/2 teaspoon garlic powder 1/2 teaspoon onion powder Salt and black pepper, to taste For the Street Corn: 2 cups corn kernels (fresh, frozen, or canned) 1 tablespoon mayonnaise 1 tablespoon sour cream 1 teaspoon lime juice 1/2 teaspoon chili powder 1/4 teaspoon smoked paprika (optional) 1/4 cup cotija cheese or feta, crumbled Fresh cilantro, chopped For the Rice: 2 cups cooked white or brown rice 1 tablespoon lime juice 1/4 cup fresh cilantro, chopped For Toppings (optional): Sliced ...

Tomorrow, after 21 nights and 22 days we will be going home. Since May 8th, 40 nights spent in the hospital. We could have built an ark.  Mini Mayhem will have to be monitored 24/7 by her pulse oximeter which shows her heart rate and oxygenation level and will alarm if either goes outside her set parameters. They were unable to do the 24 hour pH test today. While inserting the tube through her nose, there was a bit of resistance but then it went in fine. I did tell them she had a tonsillectomy and adenoidectomy on the 19th and ENT had cleared her for this test. While they were calling for X-ray to come check placement MM pulled the tube out some. They tried to advance it back in place but it wasn’t “easy” so they took it out and called the GI doc who said don’t try again. They didn’t want to cause any damage while she’s still healing. With nothing more to do, we are headed home tomorrow. **UPDATE 10:40 PM** Guess who has a temp of 100.4!!! I asked for labs in the morning to check ...

8/22/2024 We moved to the respiratory floor around 7PM last night. The respiratory panel (virus test) they did yesterday was negative for everything. They did a chest xray yesterday too and the results came back around 11AM today. Results stated: There are worsening multifocal airspace opacities in the left lung and right lower lobe, could represent multifocal atelectasis, multifocal pneumonia or layering pleural effusion superimposed on mild pulmonary edema. When they say “there are worsening” it is in comparison to her last chest x-ray on August 8th. They are going to do some lab work (they came and drew it at 2:30PM) and see if it shows any indication of infection for like the pneumonia. Multifocal atelectasis is the collapse of part of the lung in different areas or all of a lung. Her lung is NOT collapsed. That would show on the x-ray and she would have some breathing issues and she has not had any decreased oxygenation today. Pleural effusion is water inside the chest wall, ON ...

8/8 We were back in patient with the same scenario as July, difficulty breathing and desatting to 66%. We get to a room (1223) around 4am and finish up with everything and settle down just before 6am. Nothing like getting to lie down just before sunrise only to learn the window by your head has no blind to lower. LB is getting jankier with each stay. I asked about a replacement on from 8/8 to 8/11. I thought maybe I’ll block the light by putting the half of the back of the couch that is completely removable, because it’s torn up, in the window. I stopped asking about a replacement because my husband came up and brought me an eye mask. Child Life did make a call to request a new shade on 8/12 and spoke with “the boss”. Someone came that day but the message to him was to hang the blind back up because it had fallen. No one even mentioned that it had fallen……only that it was MISSING, GONE, NO LONGER THERE. He said he would be back the next day to hopefully put another up or would make sur...

Look what I mixed up today. Mini Mayhem is in the hospital and I asked for the ingredients from the pharmacy on Friday. Today is Sunday. After nothing from the doc or pharmacy asking what kind of magic I was intending to concoct, I ordered the stuff this morning for Walmart delivery and Rick brought it up tonight. (Yep, that's a cafeteria bowl. LOL) You would NOT believe this place now. Or maybe you would. I have posted to Facebook several examples of utter ridiculousnessessess that I have experienced in just this stay....and we were here last month and also in May. You know I am no bakery....there's no sugar coating here and I have been very vocal here in the hospital and on social media. To know what needs to be done and be unable to get it done, ohhhhhhhhhh the frustration. I know YOU of all people would, and did understand that. I get it now. I get it. Missing you.....and not only when I need to share the absurdities of this place. 💙 You not only took care of tiny humans, ...

Some parts are not applicable to my neurodiverse child but this sure hit me in the feels, especially since I am actively doing many of these while she is in the hospital.  My Child, I Will Fight For You Every hour.  Every day.  Every time.  When you cannot speak, I will be your voice.  When you cannot walk, I will carry you.  When you are sick, I will care for you.  When you are scared, I will keep you safe. When you are in the dark, I will be your light.  When you are tired, I will give you rest. When you are hungry, I will feed you.  When your world is spinning out of control, I will be your calm.  I will make mistakes.  I will yell too much and too loudly. (At other people…) I will fail over and over again.  I will curse.  I will fall.  I will forget.  I will sometimes be too tired to see past my own needs to yours.  Even though I stumble, I need you to know this:  My battle is for you.  My stre...