It's been a while since I last updated so I figured today was a good day to blog, but be forewarned it is quite lengthy - no blogging for a long time equates to a novella blog. A lot has been going on with me medically, I was diagnosed with Myasthenia Gravis (MG), for those who don't know what it is it's a couple of fancy words meaning I have a neuromuscular disease - the nerves and muscles can't 'talk' to each other properly. Through this diagnosis I have come to have a greater appreciation for my family. I am so very thankful for each and every one of them, as well as the friends I have made over the past several years who have been there for my family and I through prayers and support.
At the beginning of May I had surgery which resulted in me being away from our kids for several days. I have never been away from Princess, and the only time I had been away from Hot Rod was when I had Princess. Thankfully, Hubby's parents were able to come down and stay with the kids allowing Hubby and I to concentrate on the surgery. Surgery was only supposed to take about 2 hours, turned out the surgery itself took 4 leaving Hubby apprehensive about the time delay. Before going into surgery I was given my pain management options, and I elected an epidural (it numbs the thoracic region, not the lower abdomen and legs as with an epidural for labor). After two failed attempts, the epidural was properly placed. The nurse was unable to start an IV so an anesthesiologist started one for her as well as an arterial IV. So before going into the OR I have a total of 6 punctures with tubes attached to 3. Coming out of surgery I had two more IVs hooked up, a busted lip, hoarse voice (from several lenghty attempts to place a breathing tube), catheter, chest tube, black bruises on my arms and chest and oxygen. Once I saw the state I was in, and was alert enough to joke, I looked over at Hubby and said something along the lines of I can't believe you allowed them to beat me up like this. Not the best joke, but it was the best I could come up with at the time.
I went into Pre Op at 10 am and came out of surgery at 5:30 and into Post Op Recovery, then into ICU at 8 p.m. Hubby wasn't allowed to stay in the ICU with me so he went to a local hotel and slept like a rock, I watched the clock the whole night unable sleep more than a few minutes at a time. The next morning one of my arterial IVs were removed freeing up an arm - yay and later that day I was moved to a regular room. The epidural was a Godsend, as I didn't feel any pain for the time I was in the hospital. I had more drainage than anticipated, requiring the chest tube to be in longer. The chest tube, epidural tubes and oxygen tubes all came together to create an accident.
I had to use the bathroom, pronto - so I couldn't wait around to call a nurse (you have to call their cell phones and wait for them to show up), so I tell Hubby "I have to go now". He's already fussed at me about overdoing it, or getting tangled in the tubes earlier in the day - that epidural works great I'm feeling no pain so I do whatever I can. The tubes are barely long enough to reach the restroom and it's quite a feat to actually get ON the toilet while attached to all of the miscellaneous tubing. I made it to the bathroom, with at least a centimeter of tubing to spare, wash my hands and Hubby starts helping me back to bed, rolling the epidural, holding the chest tube box and right as I get to the bed, he turns to walk away...This is where the accident happens. He gets his foot tangled in the chest tube and epidural lines, he tries to get his foot out, realizes he cannot so he begins to fall fearing he's pulling my chest tube out or the epi. As he fell he managed to hold onto the bathroom door, he falls hard on his knee, door closes on his thumb, and blood gushes. I make my way over to him, grab paper towels which he places around his thumb, blood runs down his hand and onto the floor. With wet paper towels I begin wiping up the floor, he applies pressure while I clean the floor. He needs stitches, so my second night at the hospital, I'm out of ICU yet my husband is in the ER getting stitches and x-rays. Luckily it's not broken, and at least we were at the hospital...right? Once again I don't sleep, I watch the clock, text him inquiring how he is. I felt so bad I couldn't be there with him, but I don't think they'd let me bring my whole gettup of tubing down to the ER donning the ubber chic open backed hospital gown. He finally gets back up to my room after 7 in the morning, sporting his own stitches. I guess he needed to one up me (lol).
His thumb has healed well, most of my bruising has faded, and I'm no longer in pain from the surgery. I go to the surgeon and the neurologist next week to check on my progress, and while it may be up to a year before we know IF the surgery was successful - meaning I go into remission - I believe it was worth it to have a chance at life as it once was. I have good days and bad days. Days where I get around pretty well, and then there are days my eyes are barely open, blurry/double vision, weak arms and legs, trouble swallowing, and all of the other fun things that go along with MG. So I'm grateful for the good days, try not to get bummed out by the bad days and though I'm not always upbeat about MG or about the medicine I have to take (stupid prednisone I have a love/hate relationship with you!) I am grateful for my Hubby, our family and our friends who help me through this.
The ones I worry about this affecting the most, however, are our kids. They're young and deserve a 'normal' mom so I go through guilt when I'm having one of the days where all I have the energy to do is to sit and talk to them instead of getting up and playing with them. Seeing how they are handling this change is amazing. They don't get mad at me, never complain about me not taking them outside to run around instead they help me. What amazing, wonderful children God has given us. I had to get up, and as I begin the process Princess comes to me with her tiny hand outstretched with these words: "I'll help you Mommy." I smile sweetly at her and tell her "It's okay honey, I can walk to the potty by myself." She still has that beautiful tiny hand outstretched waiting for me to grasp it, and she say "Well I can hold your hand and help you walk so you won't fall Mommy." I tear up, smile at her and take that tiny hand, give it a little squeeze and we walk to the bathroom. She hold my hand the whole time, telling me that she's helping me so I won't fall and once we get there, she tells me "You can use my stool to make your feet more comfortable." She's a tiny thing, still using a stool to get on the potty and she's trying to help ME get to the restroom safely, and trying to make me comfortable by sharing her stool for my feet. I dutifully use the stool as it makes her happy, and I thank her as well as God for giving her to me! Hot Rod is also doing very well with all of this. He is quite understanding, and while I know he'd rather be outside riding his new bike right now, he asked if he could go out when Daddy comes home from work instead (heat makes MG much worse, muscles refuse to respond).
My point? We all have trials and tribulations, things we want to be different, things we wish we could change. Change what you can, be grateful for what is good, and pray about what you cannot change. Cling to the ones close to you, make sure they know you appreciate and love them. Like I tell the kids, we're all different, God made Mommy a little different than other Mommies but I'll do the best I can to do what the other Mommies are able to do it just might take me a little longer, or we might have to do it in a different way and for now, they're okay with that!
At the beginning of May I had surgery which resulted in me being away from our kids for several days. I have never been away from Princess, and the only time I had been away from Hot Rod was when I had Princess. Thankfully, Hubby's parents were able to come down and stay with the kids allowing Hubby and I to concentrate on the surgery. Surgery was only supposed to take about 2 hours, turned out the surgery itself took 4 leaving Hubby apprehensive about the time delay. Before going into surgery I was given my pain management options, and I elected an epidural (it numbs the thoracic region, not the lower abdomen and legs as with an epidural for labor). After two failed attempts, the epidural was properly placed. The nurse was unable to start an IV so an anesthesiologist started one for her as well as an arterial IV. So before going into the OR I have a total of 6 punctures with tubes attached to 3. Coming out of surgery I had two more IVs hooked up, a busted lip, hoarse voice (from several lenghty attempts to place a breathing tube), catheter, chest tube, black bruises on my arms and chest and oxygen. Once I saw the state I was in, and was alert enough to joke, I looked over at Hubby and said something along the lines of I can't believe you allowed them to beat me up like this. Not the best joke, but it was the best I could come up with at the time.
I went into Pre Op at 10 am and came out of surgery at 5:30 and into Post Op Recovery, then into ICU at 8 p.m. Hubby wasn't allowed to stay in the ICU with me so he went to a local hotel and slept like a rock, I watched the clock the whole night unable sleep more than a few minutes at a time. The next morning one of my arterial IVs were removed freeing up an arm - yay and later that day I was moved to a regular room. The epidural was a Godsend, as I didn't feel any pain for the time I was in the hospital. I had more drainage than anticipated, requiring the chest tube to be in longer. The chest tube, epidural tubes and oxygen tubes all came together to create an accident.
I had to use the bathroom, pronto - so I couldn't wait around to call a nurse (you have to call their cell phones and wait for them to show up), so I tell Hubby "I have to go now". He's already fussed at me about overdoing it, or getting tangled in the tubes earlier in the day - that epidural works great I'm feeling no pain so I do whatever I can. The tubes are barely long enough to reach the restroom and it's quite a feat to actually get ON the toilet while attached to all of the miscellaneous tubing. I made it to the bathroom, with at least a centimeter of tubing to spare, wash my hands and Hubby starts helping me back to bed, rolling the epidural, holding the chest tube box and right as I get to the bed, he turns to walk away...This is where the accident happens. He gets his foot tangled in the chest tube and epidural lines, he tries to get his foot out, realizes he cannot so he begins to fall fearing he's pulling my chest tube out or the epi. As he fell he managed to hold onto the bathroom door, he falls hard on his knee, door closes on his thumb, and blood gushes. I make my way over to him, grab paper towels which he places around his thumb, blood runs down his hand and onto the floor. With wet paper towels I begin wiping up the floor, he applies pressure while I clean the floor. He needs stitches, so my second night at the hospital, I'm out of ICU yet my husband is in the ER getting stitches and x-rays. Luckily it's not broken, and at least we were at the hospital...right? Once again I don't sleep, I watch the clock, text him inquiring how he is. I felt so bad I couldn't be there with him, but I don't think they'd let me bring my whole gettup of tubing down to the ER donning the ubber chic open backed hospital gown. He finally gets back up to my room after 7 in the morning, sporting his own stitches. I guess he needed to one up me (lol).
His thumb has healed well, most of my bruising has faded, and I'm no longer in pain from the surgery. I go to the surgeon and the neurologist next week to check on my progress, and while it may be up to a year before we know IF the surgery was successful - meaning I go into remission - I believe it was worth it to have a chance at life as it once was. I have good days and bad days. Days where I get around pretty well, and then there are days my eyes are barely open, blurry/double vision, weak arms and legs, trouble swallowing, and all of the other fun things that go along with MG. So I'm grateful for the good days, try not to get bummed out by the bad days and though I'm not always upbeat about MG or about the medicine I have to take (stupid prednisone I have a love/hate relationship with you!) I am grateful for my Hubby, our family and our friends who help me through this.
The ones I worry about this affecting the most, however, are our kids. They're young and deserve a 'normal' mom so I go through guilt when I'm having one of the days where all I have the energy to do is to sit and talk to them instead of getting up and playing with them. Seeing how they are handling this change is amazing. They don't get mad at me, never complain about me not taking them outside to run around instead they help me. What amazing, wonderful children God has given us. I had to get up, and as I begin the process Princess comes to me with her tiny hand outstretched with these words: "I'll help you Mommy." I smile sweetly at her and tell her "It's okay honey, I can walk to the potty by myself." She still has that beautiful tiny hand outstretched waiting for me to grasp it, and she say "Well I can hold your hand and help you walk so you won't fall Mommy." I tear up, smile at her and take that tiny hand, give it a little squeeze and we walk to the bathroom. She hold my hand the whole time, telling me that she's helping me so I won't fall and once we get there, she tells me "You can use my stool to make your feet more comfortable." She's a tiny thing, still using a stool to get on the potty and she's trying to help ME get to the restroom safely, and trying to make me comfortable by sharing her stool for my feet. I dutifully use the stool as it makes her happy, and I thank her as well as God for giving her to me! Hot Rod is also doing very well with all of this. He is quite understanding, and while I know he'd rather be outside riding his new bike right now, he asked if he could go out when Daddy comes home from work instead (heat makes MG much worse, muscles refuse to respond).
My point? We all have trials and tribulations, things we want to be different, things we wish we could change. Change what you can, be grateful for what is good, and pray about what you cannot change. Cling to the ones close to you, make sure they know you appreciate and love them. Like I tell the kids, we're all different, God made Mommy a little different than other Mommies but I'll do the best I can to do what the other Mommies are able to do it just might take me a little longer, or we might have to do it in a different way and for now, they're okay with that!
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