Tales From an Exhausted Medical Mama

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...

Mini Mayhem has a UTI. Again. Despite coming in for the second time with respiratory distress, that has been overshadowed by a UTI both times.  Growth came back today, and her bacteria's name is Sue D. Moanus. Last time it was a dude named E. Coaleye. We changed gears today with IV antibiotics to one that will get rid of Sue. While getting her second dose, I laid down next to her in the bed and her arm board (which keeps the part of her arm straight where her IV is) was wet. The arm board and her bed pad got her antibiotic. Her IV leaked. So, although it's bedtime, we are waiting for the PICC team (IV experts with a cool handy dandy ultrasound machine to find veins) to come start another IV, she will get re-dosed on her antibiotic because the majority of it did not go to her and then she can go to sleep. I am more exhausted than ever. I am too old for all of this. Sleeping on concrete would probably be more comfortable than sleeping on what they call "furniture" here....

When a tragedy occurs, there are so many questions, some without answers. People search for reasons, for someone or something to blame. In moments of uncertainty and sorrow, we are reminded of the fragility of life and the unpredictable nature of the world we live in. As humans, we have an innate need for understanding. Curiosity drives us to seek answers, a reason or explanation for something we do not understand. Seeking explanations provides a sense of control, predictability, and understanding. However, there are moments in life when no amount of rationale or logic can provide a satisfactory explanation. Our reality is shaped by our own perspectives and experiences. What may make perfect sense to one person might be utterly confusing to another. It's like we're all living in our own little bubbles of understanding, with occasional overlap but plenty of room for misinterpretation. It is natural in unexpected and unexplainable incidents for people to speculate on the event...