We have been through so many tough times with Madilyn.... so many things we thought we'd never make it through but we have. I've shared so much and at the same time so very little of what our life is really like at times. Since Madilyn got sick in early October we've been on a super fast downhill slide. It's going so fast that we often feel like we're going crazy and question our own perspective on what's really happening.
As the sleep issues escalated so do the behaviors. It made us all feel incredibly insane.... and broken. Dealing with all of the new health issues combined with all of the behavior issues just became too much for me. First I need to state that we have some super amazing and supportive people in our lives. We have a tribe of some of the best people we've ever had in our lives.... but there was an aspect of our lives that I did not let them in on. I would make comments sometimes and try to make light of the situation at home... but I was never truly honest with them. There's a fear that comes with that kind of honesty... a fear that people with think badly of you, or judge you... the biggest fear of all is that it will be too much for them and they will walk away.
This past Friday after 2 months of never sleeping more than 3 or 4 hours max at a time... months of broken sleep and heartbreaking medical issues.. I snapped.. and so did Madilyn. There's an abuse problem. It made me feel just as ashamed and broken as the abuse in my first marriage did. I desperately tried to hide it. I wear long sleeves to cover bruises and scratches and I don't really talk about it. There are very few people who ever get to actually witness it.
Madilyn was so escalated by Friday morning... days and days of not sleeping at all... her aggression was through the roof. Her screams make you wish you were deaf and her unbelievable strength when she's that escalated makes me feel like I'm being beaten by a full grown man instead of the tiny little being that she is. There's no stopping her, there's no ability to reason with her. All she knows is she's hurting and I'm her person and I'm not fixing it.
After about 5 hours of repeated beating and screaming I called our care team sobbing and begged for help. She could hear Madilyn in the background and said we needed to come to the ER to be admitted. She made me promise I would call someone for help as soon as I hung up.... I've never done that... my people were not here.. I had no other choice.
I called my friend to get my work shifts covered and to tell her what was going on.. Madilyn was screaming and I fell apart... I could not stop sobbing.. she immediately sent another friend over and she got my shifts covered at work... My friend came in and simply ran interference between Madilyn and me. She let me cry.. she let me walk away and did everything she could to distract her. Madilyn came at me and was kicking the shit out of me and hitting me and she told me that if I needed to go in the garage and smoke a cigarette she was fine with it.... I think I apologized a million times for how awkward she must feel in the middle of this situation.... she simply reassured me it was fine. Another friend showed up and just held me while I cried and together we put a plan in place for when these things happen. Like it or not, this is our life.
All 3 of my friends have repeatedly checked on me and reassured me how much they love me and that they are right there for anything we need.
Friday was the first time I've ever put Madilyn in the playpen begging her to stop because I was afraid I would hurt her. I walked away with her blood curling screaming and took a shower... and sobbed my heart out and prayed like crazy to a God I'm not sure I believe in.... right after that is when I called for help.
People read in the media about a special needs parent that snapped and hurt their child and they judge them. They find out about a parent that walked away and they judge them and say nasty shit about them.... on Friday... I completely understood both. I reached out.. not everyone has that option. The life we live is very isolating. People walk out of our life on a regular basis.. or tell us they'll be there and they're not. We hear all the time... just ask, we'll help.... not understanding how hard it is for us to ask.
My husband has heard more times in the past two months that I can't do this anymore... he has heard a million times while I'm sobbing that I feel so broken it hurts... what a failure I feel like because I wasn't able to help her... nothing can take away that feeling.. all the reassurance in the world doesn't take away the pain...
We spent 3 nights in the hospital... by Saturday at noon time after only sleeping 2 of the last 24 plus hours Madilyn stopped.. it was like someone flipped a switch and she became pretty non responsive and just had a glassed over look and was vomiting.. just opening her mouth and letting it pour out... she stayed that way for about 30 hours.. it scared the hell out of me. We ended up determining that we thought Madilyn was caught in a migraine cycle. One that finally shut her right down.
We've always questioned if she lived with daily pain. Our care team always said they didn't think so. With all of the new blood issues coming to light they now say that she definitely does. We've been referred to the Pain Management team at Children's to determine the base level of daily pain she lives with and to determine if it is migraines she is dealing with.
We had extensive talks about bone marrow testing vs pet scans..... we had an honest and open conversation about what Hematology is looking for... they think she has cancer that is not yet showing in her blood.... we had conversations about the Advance Directives that were put into place prior to her lung procedure last month... we've been having incredible hard conversations that no parent should ever have to have.
We also had a very honest conversation that our team does not think Madilyn's health situation will improve... it will continue to decline... BUT we are taking steps to make it more livable and to bring her more comfort. We are hopeful to have more happy times and to hear more giggles than screaming and crying.
We are grateful that the new med has brought some sleep even if it's only for a short time. We are grateful for the happy giggles that started our morning today. We are going to remind ourselves to live in each moment.... find the positive in every situation... and remind ourselves to breathe...
I'm no longer looking at Friday as the worst moment of my life.... I'm looking at the positive that came from it.... I'm thankful and so beyond grateful for our tribe... I'm thankful our "secrets" are out... and I'm hopeful that being honest about it can maybe help one other person that is living a life that involves any type of abuse....
We have a big meeting with Madilyn's team on Thursday to discuss the next steps on our road.... until then I'll focus on finding some new pink fucking shoes...
Tuesday, March 10, 2020
Saturday, February 8, 2020
Rollercoaster Ride
Dad post time here.... (I hacked mom's account) I don't usually say to much when it comes to our personal life and life with little miss, but I think I just need to vent.
We get all this news on what's happening with Madilyn and we try to wrap our heads around it the best we can, but that isn't always easy. At times, it isn't always possible. I try desperately to stay positive and not to dwell too much on the dreaded "what ifs", but every once in a while it sneaks in and takes hold. Now is one of those times.
We knew full well going into this that we were living on borrowed time with Madilyn and one day she won't be with us. We knew this... doesn't help. The thought of not having her around scares the hell out of me. We've watched her grow when we were told she wouldn't. We watched her learn when we were told she couldn't. She proved them all wrong and beat the odds. I need her to defy those odds again. One. More. Time.
I see the toll all of this takes on Kathy. The sleepless nights, the balls to the walls days. That woman is a saint. She is by far the strongest woman I know. I do know, however, that strong doesn't last forever. You can go full throttle or you can go for longevity... not both. At least not for long. "Slow and steady wins the race" doesn't seem reachable. She's tired. She hurts. She cries. Yet she gets up every single day and does it again and she perseveres. I worry about the breaking point... for both of them. When is it all too much? They both amaze me every single day. I'm not sure if this is someone's way of telling her she needed work on her patience or not, but she has honed that skill to a fine edge. Her mommy gut has been spot on even when the specialist thought she was cracked. Her mission has been very clear. She pressed the issues when the doctors wouldn't listen to the point that we thought they would call CPS or the authorities on her. Thankfully they listened to her before it came to that.
I'm not really sure where I was going with this, so it kinda rambled. Sorry about that... I do know that I love that little girl more than I every thought humanly possible. We always hear, "Oh... she is so lucky to have you both in her life", when in reality, we are the lucky ones. We have learned more from her than she will ever know. She has taught us to appreciate the things we all too often take for granted. When it's good, it's a good like no other. The giggles, squeals, and squeezes. Oh, the squeezes! Man, I love the squeezes. On the flip side of that, when it goes downhill, it goes quickly. It's all one big rollercoaster ride. So we hang on through the twists and turns and highs and lows and go where it takes us.
If you've read this far, thank you. Thank you for listening. I don't own any pink fucking shoes, but I will. That's a promise. I'm thinking that's my next tattoo... If you have pink shoes, wear them once in a while and smile... because you know it's all about them.
We get all this news on what's happening with Madilyn and we try to wrap our heads around it the best we can, but that isn't always easy. At times, it isn't always possible. I try desperately to stay positive and not to dwell too much on the dreaded "what ifs", but every once in a while it sneaks in and takes hold. Now is one of those times.
We knew full well going into this that we were living on borrowed time with Madilyn and one day she won't be with us. We knew this... doesn't help. The thought of not having her around scares the hell out of me. We've watched her grow when we were told she wouldn't. We watched her learn when we were told she couldn't. She proved them all wrong and beat the odds. I need her to defy those odds again. One. More. Time.
I see the toll all of this takes on Kathy. The sleepless nights, the balls to the walls days. That woman is a saint. She is by far the strongest woman I know. I do know, however, that strong doesn't last forever. You can go full throttle or you can go for longevity... not both. At least not for long. "Slow and steady wins the race" doesn't seem reachable. She's tired. She hurts. She cries. Yet she gets up every single day and does it again and she perseveres. I worry about the breaking point... for both of them. When is it all too much? They both amaze me every single day. I'm not sure if this is someone's way of telling her she needed work on her patience or not, but she has honed that skill to a fine edge. Her mommy gut has been spot on even when the specialist thought she was cracked. Her mission has been very clear. She pressed the issues when the doctors wouldn't listen to the point that we thought they would call CPS or the authorities on her. Thankfully they listened to her before it came to that.
I'm not really sure where I was going with this, so it kinda rambled. Sorry about that... I do know that I love that little girl more than I every thought humanly possible. We always hear, "Oh... she is so lucky to have you both in her life", when in reality, we are the lucky ones. We have learned more from her than she will ever know. She has taught us to appreciate the things we all too often take for granted. When it's good, it's a good like no other. The giggles, squeals, and squeezes. Oh, the squeezes! Man, I love the squeezes. On the flip side of that, when it goes downhill, it goes quickly. It's all one big rollercoaster ride. So we hang on through the twists and turns and highs and lows and go where it takes us.
If you've read this far, thank you. Thank you for listening. I don't own any pink fucking shoes, but I will. That's a promise. I'm thinking that's my next tattoo... If you have pink shoes, wear them once in a while and smile... because you know it's all about them.
Friday, January 31, 2020
Our broken hearts
I'm not even sure how to really say where we are on our road right now.. our hearts are hurting, we are trying desperately to process everything.
Madilyn had a sedated CT scan a few weeks ago to look for erythropoietin secreting tumors. The whole experience was terrifying. We went in expecting a simple sedated scan with contrast and apparently the contrast is different than the one used for MRI's or her feeding tube changes and she had a severe allergic reaction to it. A, she couldn't breathe and covered in rash and hives, kind of reaction to it. When she came out of the scan and was through the roof agitated they said they only brought her out because they needed me to help calm her down. Her heart rate at this point was around 200, which even for her is crazy high..... in the process of trying to soothe her they filled me in on her allergic reaction and the fact that on the CT scan it showed that her lungs are full of something... there's a spot in her right lung that they were unable to clearly determine if it is a nodule or mass of some type....her bronchial tubes are significantly smaller on one side... and her right lung is partially collapsed.... yes, epic mommy sobbing meltdown ensued following this news and many many times since.
We are scheduled now for a bronchoscopy for our pulmonary doctor to go in and get a really good look at what's going on in her lungs.... then they are going to flush her lungs with saline (aspirate her) and catch the backwash to be sent to the lab for testing. They need to know if it's mucous, bacteria, whatever it is... then they are going to clean out her lungs via suctioning. Yes, the whole thing is as horrible as it sounds and her recovery has the potential to be incredibly rough.... we are terrified... we have to know what is going on because her body is signaling via her blood that it is not getting enough oxygen to support it.
We are experiencing episodes of extreme agitation and times where she literally stops what she's doing and puts her little hand on her chest and lets out this little noise that sounds like she's saying "ooh"... she will also take my hand and place it on her chest and scream at me... she's trying to tell me how much pain she's in and it's heartbreaking.
In the process of trying to absorb all of the reality with the lung issues her hematologist informed me of where we are at now..... papers are being submitted to insurance for approval for a specific genetic test.. it's the JAK2 Gene Mutation test. Since there are no tumors emitting the high hormone levels there's one of two things driving it... it's either the gene mutation or it's a problem with her bone marrow... neither one is a good option and the only treatments that we are aware of are not an option. The only treatment is chemo and a stem-cell transplant which she would not survive and we will not put her through. We do however have to determine the source in order to know timelines, comfort measures and therapeutic treatments.
Madilyn's at triple the normal risk currently for heart attack, stroke and blood clots and that's before any of the lung issues are even figured out or included in that risk factor.
This is sooooo overwhelming for us to try and process. We always knew that every day with Madilyn was a gift and that her life expectancy wasn't very long but to have come this far and now actually have a Doctor start talking comfort measures sucks the wind right out of your sails. We may get several more years, the truth is we don't know. What we do know is that her little body is under extreme stress and we are trying to figure out what to do to help her.
I'd love to end this with some catchy little upbeat phrase about those pink fucking shoes but at this moment in time all I've got is a broken heart and those pink fucking shoes....
Madilyn had a sedated CT scan a few weeks ago to look for erythropoietin secreting tumors. The whole experience was terrifying. We went in expecting a simple sedated scan with contrast and apparently the contrast is different than the one used for MRI's or her feeding tube changes and she had a severe allergic reaction to it. A, she couldn't breathe and covered in rash and hives, kind of reaction to it. When she came out of the scan and was through the roof agitated they said they only brought her out because they needed me to help calm her down. Her heart rate at this point was around 200, which even for her is crazy high..... in the process of trying to soothe her they filled me in on her allergic reaction and the fact that on the CT scan it showed that her lungs are full of something... there's a spot in her right lung that they were unable to clearly determine if it is a nodule or mass of some type....her bronchial tubes are significantly smaller on one side... and her right lung is partially collapsed.... yes, epic mommy sobbing meltdown ensued following this news and many many times since.
We are scheduled now for a bronchoscopy for our pulmonary doctor to go in and get a really good look at what's going on in her lungs.... then they are going to flush her lungs with saline (aspirate her) and catch the backwash to be sent to the lab for testing. They need to know if it's mucous, bacteria, whatever it is... then they are going to clean out her lungs via suctioning. Yes, the whole thing is as horrible as it sounds and her recovery has the potential to be incredibly rough.... we are terrified... we have to know what is going on because her body is signaling via her blood that it is not getting enough oxygen to support it.
We are experiencing episodes of extreme agitation and times where she literally stops what she's doing and puts her little hand on her chest and lets out this little noise that sounds like she's saying "ooh"... she will also take my hand and place it on her chest and scream at me... she's trying to tell me how much pain she's in and it's heartbreaking.
In the process of trying to absorb all of the reality with the lung issues her hematologist informed me of where we are at now..... papers are being submitted to insurance for approval for a specific genetic test.. it's the JAK2 Gene Mutation test. Since there are no tumors emitting the high hormone levels there's one of two things driving it... it's either the gene mutation or it's a problem with her bone marrow... neither one is a good option and the only treatments that we are aware of are not an option. The only treatment is chemo and a stem-cell transplant which she would not survive and we will not put her through. We do however have to determine the source in order to know timelines, comfort measures and therapeutic treatments.
Madilyn's at triple the normal risk currently for heart attack, stroke and blood clots and that's before any of the lung issues are even figured out or included in that risk factor.
This is sooooo overwhelming for us to try and process. We always knew that every day with Madilyn was a gift and that her life expectancy wasn't very long but to have come this far and now actually have a Doctor start talking comfort measures sucks the wind right out of your sails. We may get several more years, the truth is we don't know. What we do know is that her little body is under extreme stress and we are trying to figure out what to do to help her.
I'd love to end this with some catchy little upbeat phrase about those pink fucking shoes but at this moment in time all I've got is a broken heart and those pink fucking shoes....
Monday, January 6, 2020
Choices
It's bright and early Monday morning and I'm laying here thinking and drinking coffee.
This is a lifestyle, not a diet or a fad.
It's not a moment in time and it's not about being perfect all of the time.
It's about being able to do the things I want to do without feeling like shit all of the time.
It's about my knees and my back not hurting and having the energy to keep up with the Sasshole and all that life with her entails.
It's about not wanting to explode over the top of my jeans and about feeling good in a swimsuit.
It's about taking the time to put my mental and physical health FIRST!
It's about learning to make better choices.
It's about learning what fuels my body and what doesn't.
It's about wading through your own bullshit and excuses to get to where you want to be.
It's about choosing to deal with the feeling no matter how hard.
It's about choosing what's going to fuel my body rather than what's going to taste good in the moment.
It's about choosing to move my body daily.
It's about choosing to eat the fucking salad.
It's about choosing to drink the fucking water.
Anyone who knows me knows that my first choice to avoid feelings was alcohol. I kept all the things locked inside and I drank instead. I was the life of the party. I was also so emotionally broken I didn't know what else to do. Dealing with the actual feelings was "too hard" so I drank instead. When the time came around that I couldn't use the alcohol to make me feel better I turned to food.
I would literally eat until I was so stuffed I thought I would vomit if I had to burp. I couldn't have sex with my husband because I was so stuffed I would puke. I loved my husband and children beyond measure but hated my life so much I didn't even know what to do with it... so I ate.
I think I'm so obsessed with My 600 lb Life because that's the path I was on. I was watching it the other night and Dr. Now was talking to a patient that blamed everything on food addiction, they claimed to have no control (I've been there) and he said "Food addiction is just like any other addiction, it's a choice.. it may get out of control but ultimately it's a choice and now you can choose to accept responsibility and walk the hard path of getting healthy or you can choose to die".
I'm a firm believer in that every single thing you do from the moment you wake up in the morning is a choice. You can blame whatever you want, have any excuse you want, but it's a choice.
You can choose to spend your life being a victim and crying oh poor me or you can step up and do the work and feel the super hard feelings and be a survivor... a warrior. Life is not easy for anyone.. we all have baggage..
I have lived through rape, domestic violence, verbal abuse, depression, anxiety, physically debilitating illness.... I have also survived, sought counseling and learned to deal with the really hard things rather than eating or drinking them.
I am not perfect by any measure. I have learned to love my flaws... I look in the mirror every day and say something positive about myself rather than beating myself up and letting my inner mean girl out.
We all go through different seasons in life.. sometimes it's great, other times it's good and sometimes it just sucks... I'm in a season of suck right now.. I started going back down the wrong path with some food choices and lack of consistency with working out... I feel it. I feel like crap, I'm more tired than normal, my back hurts.... and so does my heart. I'm scared of the path we are going down with Madilyn... but neglecting myself won't help that in any way..
I woke up this morning and this blog started as a post to my Fitfam girls to get them motivated and as it kept growing I realized it was just something that I needed to share for everyone to see... some things just need to be given life.
I want you to know that you are worth it.
The impossible can be done.
You are beautiful.
Your life can be amazing.
You can do hard things.
You can overcome.
You can be happy.
You are worth loving.
You are a survivor.
You are a warrior.
Most importantly.... You are not alone.
Now pick yourself up and go buy some pink fucking shoes and move your ass!
Friday, January 3, 2020
Thursday, January 2, 2020
The Road
The most memorable thing a doctor ever said to me when my degenerative disc disease was at it's worst was "emotional pain can manifest itself in physical ways". This has played over and over in my head a million times over the past 4 days as I struggle to get up.
Madilyn's vomiting got to the point on Monday that I couldn't take it anymore and I messaged our care team to request a placement check on her feeding tube. That message escalated super quick into phone calls from them and 3 of our 17 specialists being involved... and off to the ER we went. Can you imagine what it's like walking into a Children's Hospital emergency room with 40+ patients in the waiting room and multiple in line to check in and when they ask for her name and hear it you are immediately jumped in front of every single person there?? We heard "it's her.. get her stats and get her into a room..now"... perks..yes... reality.. she's too fragile to have her exposed to all of that and she escalates so quickly it can be dangerous. Their main concern was her shunt, it was never ours. They did a quick brain MRI and shunt series x-rays and it looked fine. The neuro doc came in and talked to us and it went from "we don't see an issue with the shunt" to "I'm going to check something" to a nurse telling us they were admitting us under the hospitalist so all bases could be covered.... 5 hours into this ER visit, Scott had just left and we were waiting for our escort to our room and it happened.... Madilyn coughed and started vomiting blood all over the place... everything stops at that moment. I buzzed the nurse, she came in and went running out to get the doctor... they tested her vomit and it was definitely blood. The transport upstairs was canceled and they had to figure out a new plan asap. Come to find out we had weaned off of her omeprazole for reflux last summer and it was back with a vengeance. Meds were started and we were admitted for IV fluids because she was dehydrated from all of the vomiting and her heartrate and blood pressure were through the roof.
It was 1:30 am before we were brought to our room on W11... they had given her sleep meds at midnight in the ER but there's no sleeping when she's constantly being poked and checked. Once we were in our room it starts all over again with the team on the floor. Our inpatient stay did not start on a good note when the first thing the floor doc said was "it's probably just a mystery virus"... set this stressed out momma right off. I told him that their years of "mystery viruses" were never that.. they were a formula allergy and nobody would listen to me and then it was Secondary Adrenal Insufficiency ... both of which almost killed her and nobody listened until I screamed and shouted and went toe to toe with doctors. I told him that there is nothing wrong with her shunt and she does NOT have any fucking virus and that something has been escalating since early October and they needed to figure it out and that I didn't think that would happen inpatient.
We slept for only 2 hours that first night and then they came and woke her up again.... by the time the hospitalist team came for rounds and said it's probably just a virus I couldn't keep quiet... 6 doctors and 2 nurses in the room plus our Special Needs team NP and I piped up with "I call bullshit"...literally... talk about stunned heads turning... I told them exactly how I felt and why I felt that way and that I didn't think they'd solve anything there and that we have an upcoming appointment with Hematology on Tuesday because of some labs that were off (and have been trending more and more off for 3 years). I've questioned some of those labs multiple times and always get told "It's not far out of the normal range" or "It's just Madilyn being Madilyn".... I'm so frustrated at this point that by 9 pm on night two I told the nurse to get the stupid GI doc and get us discharged because we were at the point that we'd be up for 40+ hours and her behaviors were escalating quickly which would just land us in more trouble. By the time the doc came I had Madilyn sleeping in her stroller, which is a HUGE safety no-no there. He couldn't and wouldn't discharge us because she was having some issues urinating and they couldn't figure out what was going on so in true sleep deprived mommy fashion I threatened to hurt anyone who touched or disturbed her or anyone who tried to make me put her in the bed. Definitely not my best moment but he complied. They only time they could do anything was if I hit the call button. I did but only once at 1:10 am to tell them they had 10 minutes to check her vitals and get her another round of sleep meds (she was already connected to a continual pulse ox monitor so if anything bad happened we would know)... we were not bothered until 7:30 am when the Hospitalist woke me up.
I apologized immediately for my tirade the evening before and he immediately told me that he understood. He said they saw how quickly she went from miserable to stable to going in the wrong direction because as soon as she was stable her anxiety and stress levels escalate quickly. He said they had a lot of things to check on but knew they needed to get us out the door as quickly as possible.
A few hours later when the docs were in the room the on-call Endocrine doc piped up that she had questions for me... after talking for a few minutes she said she had serious concerns about Madilyn's parathyroid and thyroid function. Her body is consistently making too much calcium... and that is caused by the parathyroid malfunctioning.. she ordered tons of labs. She also clearly stated that Madilyn's would be a genetic cause because she does NOT have the cancerous tumor that parathyroid problems typically start with. Phew.... someone finally said it.... for over a month now we've had in the back of our brains that problem may be cancer of some type...
When you are referred to Hematology the way we were in November and see and appointment show up with the Oncology lab it makes your heart stop. A typical child has a 1 in 4 chance of a cancer diagnosis... a child with a genetic abnormality has 4 times that risk and Madilyn has multiple genetic abnormalities.... for us it's never really been a case of "if" that most parents don't even think about.. it's always been a "when".... for the moment we're breathing a little easier. We'll find out more at our appointment on Tuesday and after all of her labs are done.
The road we are potentially on, if labs confirm it's her parathyroid, is not going to be easy at all... we already struggle with weight (and she's losing again), it causes issues with bone health, muscle weakness, vomiting, nausea, fatigue, kidney problems.... ugh ugh ugh... and there isn't much in the line of treatment and all of these things are escalated because of her adrenal insufficiency... it's going to be a rough road.. but it's a road and not another I don't know...
Now I have to stop the stress path I was on and lose the 10 pounds I've gained and take care of myself again. I have to be at my best in order to be what she needs. I spent the majority of our 3 days at the hospital crying and yelling at someone... the yelling was necessary and the tears were pure frustration because nobody was listening... I'm learning to nap when she does.. the dishes and laundry can wait.. our sleep is very very erratic and has been for months. I got my work shifts covered for a few days and am putting her and myself first.
I put this out there because I am physically hurting and I need to give my emotional pain life so my physical pain can go the fuck away..... I don't really ask for prayers but we could really use some so maybe this path won't be quite as hard as it has the potential to be....
oh, and my very own pink fucking shoes should be delivered tomorrow...
Madilyn's vomiting got to the point on Monday that I couldn't take it anymore and I messaged our care team to request a placement check on her feeding tube. That message escalated super quick into phone calls from them and 3 of our 17 specialists being involved... and off to the ER we went. Can you imagine what it's like walking into a Children's Hospital emergency room with 40+ patients in the waiting room and multiple in line to check in and when they ask for her name and hear it you are immediately jumped in front of every single person there?? We heard "it's her.. get her stats and get her into a room..now"... perks..yes... reality.. she's too fragile to have her exposed to all of that and she escalates so quickly it can be dangerous. Their main concern was her shunt, it was never ours. They did a quick brain MRI and shunt series x-rays and it looked fine. The neuro doc came in and talked to us and it went from "we don't see an issue with the shunt" to "I'm going to check something" to a nurse telling us they were admitting us under the hospitalist so all bases could be covered.... 5 hours into this ER visit, Scott had just left and we were waiting for our escort to our room and it happened.... Madilyn coughed and started vomiting blood all over the place... everything stops at that moment. I buzzed the nurse, she came in and went running out to get the doctor... they tested her vomit and it was definitely blood. The transport upstairs was canceled and they had to figure out a new plan asap. Come to find out we had weaned off of her omeprazole for reflux last summer and it was back with a vengeance. Meds were started and we were admitted for IV fluids because she was dehydrated from all of the vomiting and her heartrate and blood pressure were through the roof.
It was 1:30 am before we were brought to our room on W11... they had given her sleep meds at midnight in the ER but there's no sleeping when she's constantly being poked and checked. Once we were in our room it starts all over again with the team on the floor. Our inpatient stay did not start on a good note when the first thing the floor doc said was "it's probably just a mystery virus"... set this stressed out momma right off. I told him that their years of "mystery viruses" were never that.. they were a formula allergy and nobody would listen to me and then it was Secondary Adrenal Insufficiency ... both of which almost killed her and nobody listened until I screamed and shouted and went toe to toe with doctors. I told him that there is nothing wrong with her shunt and she does NOT have any fucking virus and that something has been escalating since early October and they needed to figure it out and that I didn't think that would happen inpatient.
We slept for only 2 hours that first night and then they came and woke her up again.... by the time the hospitalist team came for rounds and said it's probably just a virus I couldn't keep quiet... 6 doctors and 2 nurses in the room plus our Special Needs team NP and I piped up with "I call bullshit"...literally... talk about stunned heads turning... I told them exactly how I felt and why I felt that way and that I didn't think they'd solve anything there and that we have an upcoming appointment with Hematology on Tuesday because of some labs that were off (and have been trending more and more off for 3 years). I've questioned some of those labs multiple times and always get told "It's not far out of the normal range" or "It's just Madilyn being Madilyn".... I'm so frustrated at this point that by 9 pm on night two I told the nurse to get the stupid GI doc and get us discharged because we were at the point that we'd be up for 40+ hours and her behaviors were escalating quickly which would just land us in more trouble. By the time the doc came I had Madilyn sleeping in her stroller, which is a HUGE safety no-no there. He couldn't and wouldn't discharge us because she was having some issues urinating and they couldn't figure out what was going on so in true sleep deprived mommy fashion I threatened to hurt anyone who touched or disturbed her or anyone who tried to make me put her in the bed. Definitely not my best moment but he complied. They only time they could do anything was if I hit the call button. I did but only once at 1:10 am to tell them they had 10 minutes to check her vitals and get her another round of sleep meds (she was already connected to a continual pulse ox monitor so if anything bad happened we would know)... we were not bothered until 7:30 am when the Hospitalist woke me up.
I apologized immediately for my tirade the evening before and he immediately told me that he understood. He said they saw how quickly she went from miserable to stable to going in the wrong direction because as soon as she was stable her anxiety and stress levels escalate quickly. He said they had a lot of things to check on but knew they needed to get us out the door as quickly as possible.
A few hours later when the docs were in the room the on-call Endocrine doc piped up that she had questions for me... after talking for a few minutes she said she had serious concerns about Madilyn's parathyroid and thyroid function. Her body is consistently making too much calcium... and that is caused by the parathyroid malfunctioning.. she ordered tons of labs. She also clearly stated that Madilyn's would be a genetic cause because she does NOT have the cancerous tumor that parathyroid problems typically start with. Phew.... someone finally said it.... for over a month now we've had in the back of our brains that problem may be cancer of some type...
When you are referred to Hematology the way we were in November and see and appointment show up with the Oncology lab it makes your heart stop. A typical child has a 1 in 4 chance of a cancer diagnosis... a child with a genetic abnormality has 4 times that risk and Madilyn has multiple genetic abnormalities.... for us it's never really been a case of "if" that most parents don't even think about.. it's always been a "when".... for the moment we're breathing a little easier. We'll find out more at our appointment on Tuesday and after all of her labs are done.
The road we are potentially on, if labs confirm it's her parathyroid, is not going to be easy at all... we already struggle with weight (and she's losing again), it causes issues with bone health, muscle weakness, vomiting, nausea, fatigue, kidney problems.... ugh ugh ugh... and there isn't much in the line of treatment and all of these things are escalated because of her adrenal insufficiency... it's going to be a rough road.. but it's a road and not another I don't know...
Now I have to stop the stress path I was on and lose the 10 pounds I've gained and take care of myself again. I have to be at my best in order to be what she needs. I spent the majority of our 3 days at the hospital crying and yelling at someone... the yelling was necessary and the tears were pure frustration because nobody was listening... I'm learning to nap when she does.. the dishes and laundry can wait.. our sleep is very very erratic and has been for months. I got my work shifts covered for a few days and am putting her and myself first.
I put this out there because I am physically hurting and I need to give my emotional pain life so my physical pain can go the fuck away..... I don't really ask for prayers but we could really use some so maybe this path won't be quite as hard as it has the potential to be....
oh, and my very own pink fucking shoes should be delivered tomorrow...
Tuesday, December 3, 2019
Nobody told me....
Eight years into this life with my sweet Peanugga.. aka.. the Sasshole... I think if I had a penny for every time I think "nobody ever told me" money wouldn't ever be an issue in our life.
Nobody told me that the sweet baby I called "Grandma's gift from God" before she was ever born would make me question my faith and if there really is a God more than anything in my life ever has.
Nobody told me that there is no such thing as stable.. because every single time you think you are in a good place something always happens.
Nobody told me I'd have PTSD and stress anxiety related to all things Madilyn and medical.
Nobody told me I'd be filling out Advance Directives (DNR) "just in case" my child codes during anesthesia or something happens with her Adrenal Insufficiency. Her quality of life, not quantity, has always been top priority.
Nobody told me how exhausted we would be.
Nobody told me just how much we'd actually have to give up.
Nobody told me how hard we would have to fight for absolutely everything.
Nobody told me how many aspects of our life we would come to hate.
Nobody told me that even on the worst of days when I go to bed thinking and sometimes even saying "I can't do this anymore"... that I would get up and do it all over again without even batting an eye.
Nobody told me that it was humanly possible to actually have such a love/hate relationship with your life.
Nobody told me that the phrase "we just don't know" would become the norm yet so unbelievably unacceptable yet accepted at the same time.
Nobody told me that the what if's would so acceptably just become the when's.
Nobody told me that there is no way to prepare yourself for the child that your fear is greater that they will outlive you than if they don't.
Nobody told me that when I really have to go toe to toe with doctor's it's because of my gut instinct because with a one of a kind child like Madilyn there is no precedence to base things on.
Nobody told me that someday I would completely understand how some parents walk away. It is still not something I would ever choose to do, but, I completely understand it.
Nobody told me how much I would learn from her.
Nobody told me how much I would love her.
Nobody told me that no matter how frustrated I get... I still don't know where she ends and I begin...
Nobody told me that who I am would be completely intertwined with who she is.
Nobody told me how much the things I crave the most in life... sleep and silence... would also be my biggest fears.
Nobody told me just how hard I'd be willing to fight for what I believe is best for her.
Nobody told me all the people that would walk out of our life.
Nobody told me how much we would hurt or just how huge our capacity to love is.
Nobody told me that there would be days that I hate those pink fucking shoes....
Nobody told me so many things... this list could go on and on and on...
The one thing I will tell you is that no matter how hard it is, how much we hurt, how frustrated we get, how alone we feel or how much we love/hate our life in any given moment is that we would do it all over again in a moment with her. We learn to live in the moment and try not to get lost in the dark ones. We prepare for the what if's and the when's hoping that they are not right around the corner... and we continue to focus on those little pink shoes...
Nobody told me that the sweet baby I called "Grandma's gift from God" before she was ever born would make me question my faith and if there really is a God more than anything in my life ever has.
Nobody told me that there is no such thing as stable.. because every single time you think you are in a good place something always happens.
Nobody told me I'd have PTSD and stress anxiety related to all things Madilyn and medical.
Nobody told me I'd be filling out Advance Directives (DNR) "just in case" my child codes during anesthesia or something happens with her Adrenal Insufficiency. Her quality of life, not quantity, has always been top priority.
Nobody told me how exhausted we would be.
Nobody told me just how much we'd actually have to give up.
Nobody told me how hard we would have to fight for absolutely everything.
Nobody told me how many aspects of our life we would come to hate.
Nobody told me that even on the worst of days when I go to bed thinking and sometimes even saying "I can't do this anymore"... that I would get up and do it all over again without even batting an eye.
Nobody told me that it was humanly possible to actually have such a love/hate relationship with your life.
Nobody told me that the phrase "we just don't know" would become the norm yet so unbelievably unacceptable yet accepted at the same time.
Nobody told me that the what if's would so acceptably just become the when's.
Nobody told me that there is no way to prepare yourself for the child that your fear is greater that they will outlive you than if they don't.
Nobody told me that when I really have to go toe to toe with doctor's it's because of my gut instinct because with a one of a kind child like Madilyn there is no precedence to base things on.
Nobody told me that someday I would completely understand how some parents walk away. It is still not something I would ever choose to do, but, I completely understand it.
Nobody told me how much I would learn from her.
Nobody told me how much I would love her.
Nobody told me that no matter how frustrated I get... I still don't know where she ends and I begin...
Nobody told me that who I am would be completely intertwined with who she is.
Nobody told me how much the things I crave the most in life... sleep and silence... would also be my biggest fears.
Nobody told me just how hard I'd be willing to fight for what I believe is best for her.
Nobody told me all the people that would walk out of our life.
Nobody told me how much we would hurt or just how huge our capacity to love is.
Nobody told me that there would be days that I hate those pink fucking shoes....
Nobody told me so many things... this list could go on and on and on...
The one thing I will tell you is that no matter how hard it is, how much we hurt, how frustrated we get, how alone we feel or how much we love/hate our life in any given moment is that we would do it all over again in a moment with her. We learn to live in the moment and try not to get lost in the dark ones. We prepare for the what if's and the when's hoping that they are not right around the corner... and we continue to focus on those little pink shoes...
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