So...I had an eye opening experience today at school. It has been a great year with my 5th graders, and I have been so impressed with their compassion and kindness to me and each other. God must have known that if one part of my life needed a break, that was it. At the beginning of the school year, our principal implemented a twenty minute "team meeting" time for teachers to have with students during homeroom in the morning. Today's meeting consisted of our typical "joys and concerns" script that allows the students to express what is on their mind. But then, we opened up the discussion to anyone who just had something they wanted to share. One of my most outgoing girls raised her hand to talk and asked if she could put the link to her dad's blog on the board so that students could click on a link that would automatically donate 25 cents to research for spinal cord injuries. While I had known that her father had undergone a traumatic event that left him in a wheelchair, I did not know the details or extent of his condition. So...after the kids left this afternoon, I immediately typed in his blog information. And his story made me really think about my own situation with Logan.
My student's dad was a normal, hard-working, healthy man with 4 children. One morning last year, he said he woke up to go the bathroom and was hit with an excruciating pain in his body. To make a long story short, a herniated disk had ruptured in his back. After surgery, he was left paralyzed from the waist down. In one instant, his entire world was flipped upside down. Nothing would ever be the same. And he had a wife and 4 children to care for! The entries in his blog began about a year after the incident occurred. I'm sure it took him a long time to be able to put into words everything that has happened and the feelings that it has left him with. As I read all 7 of his entries, I could not hold back the tears. Some were sad tears, but others were tears of hope. This man, who most would think has lost everything and would be in a complete state of depression, is full of optimism. He admits he has bad days, but is grateful that his still has the ability to use his trunk and arms. One thing he said really struck home with me...he wrote... (and I hope I don't get in trouble for copying his words, but they were inspiring to me)
One question I have never asked is “Why me?” It is just a silly question in many ways. It is like asking “why is the sky blue?” “ Why do we die?” “Why is Jennifer Lopez so gorgeous? (I had to say it, sorry wife)”. The answer is simply: “Just because”! Put in a very blunt way, this happened to me because STUFF happens and this time it was my turn.
Looking at it from a statistical perspective, spinal cord injuries are statistically possible (low probability but still possible) so I was the lucky one in this case. Somebody has to make that small percentage. In this case it was me. I took it for the team.
Looking at it in more spiritual way, asking God “Why me?” is sort of an arrogant question. Who am I to question God’s plan for me? God made this happen to me for a reason. A reason that I might never be able to understand. It does give me peace of mind to think that this is part of a bigger plan. I hope I deliver against His plan as best as I can and exceed His expectation. (Darn, I am sounding so corporate….that happens after you work many years in Corporate America).
His words were just the reminder I needed this week to put everything into perspective. Yes, sometimes it sucks having to do Logan's irrigations at night, and sometimes I get discouraged when he is not doing things at the speed I want him to. But in the bigger picture, I am really quite lucky. I have a beautiful little boy who makes everyone that he meets smile. He is happy and will live a full life. His life might be different than I had envisioned, but that's okay. My student's dad puts it quite simply:
One of the greatest lessons I learned during a peer support meeting was that I have to get used to my new normal. What I am living now is my normal life and the more normal it becomes, the less painful it is in my heart.
I think this is true, and I am getting to this stage of acceptance. I have to give so much credit to this little girl in my class. She has never let on all year that any of this has been going on in her family. She never asks for sympathy or complains about "losing" her dad. Everyday she comes in with the most upbeat, positive attitude. She hugs her classmates when she sees them having a bad day, and she has a wonderful sense of humor for an 11-year old. I am just amazed by her strength and courage to handle this situation at such a young age. I guess you can find inspiration in places you never expected!
Wednesday, April 27, 2011
Sunday, April 24, 2011
Sweet, Sweet Sleep, oh How I Missed Thee!
Tubes tomorrow! We are so excited that Logan is going in tomorrow morning to get tubes in his ears. Hopefully, this minor procedure will bring back our sweet boy for good and keep him ear infection free!
The road to get tubes has not been an easy one this week though. The ENT put him back on Bactrum (an antibiotic) when his infection flared up last Friday. He had taken this medicine previously for three straight weeks with no problem. However, it was a different story this time. When Logan's grandparents watched him last weekend, they said he was spitting the medicine out and gagging on it. It was the same ordeal when he got home. Just the sight of the medicine bottle would freak him out...let alone trying to put it in his mouth. I thought that maybe he had decided grape was not his flavor anymore, so I had the pharmacy add bubble gum flavor to it. Unfortunately, that did not help and it only made the smell worse.
During the daytime, Sally said it was like a switch...one minute he would be fine and then the next minute he would be screaming...so unlike him. At night....it was a nightmare. For four straight nights, we started bedtime at 6:30 (irrigation, bath, bottle) and did not get the little man to sleep until 12:30! It was like he was possessed though. He was screaming at the top of his lungs, red in the face, and made himself so hot that we had to change his shirt from the sweat. Nothing would calm him down except rocking in the glider. As soon as we made a move to put him in the crib, the whole process started over. We kept thinking...we'll let him cry it out, he's got to be exhausted at this point. But even that didn't work. We felt so guilty because we knew he wasn't feeling well, but what else could we do? He had been fed, had his antibiotic and Tylenol...what else was there to do?
Well, finally on Thursday, Sally, his babysitter sent me an email at school. She said that Olin had brought Logan's medicine in a bag that day, and she noticed the prescription for Bactrum. She said that her daughter had been prescribed this medicine like 25 years ago, and it gave her horrible nightmares and made her just wild...not like herself. Then Sally said that she had been on Batrum herself and it made her dizzy and nauseous. By coincidence, Sally's husband is currently taking Bactrum and said the taste was horrible and he was having trouble sleeping too. Sally suggested that maybe this medicine was part of the problem we were having with him. So I called the ENT to check about this and he said we didn't have to give it to him Thursday night since he would be seeing him on Friday morning for pre-op. Well, wouldn't you know...Logan went right to sleep that night and slept for 8 hours straight. The next day Sally said that her sweet baby boy was back to acting like himself. I can't believe it took us so long to realize that the medicine was causing him to act so crazy. Who knew? Thank goodness for Sally's comments. We might be still trying to squeeze that medicine down his throat if she hadn't said anything! It sure would be nice for the doctors to give us a heads up about things like this. You know...possible side effects of the medicine!
As I write, Logan is sound asleep upstairs in his crib! Looks like I will have my spot back in my own bed. That's a good thing too because my mom is staying with me until Friday while Olin is out of town for work. She is going to take care of Logan tomorrow after his surgery. I am so glad to have her help this week. There is lots going on at school with CRCT this week, but on the bright side, I finished my last assignment for my graduate course last night. Only three more classes to go and then I will be planning a graduation party : ) Hopefully, now I will have more time to blog during the week so my posts won't be so long. One last thing...we have Logan's other pre-op appointment with the surgeon for his pull-through surgery on Thursday 4/28. We are hopefully to have the surgery the next week (May 6th).
The road to get tubes has not been an easy one this week though. The ENT put him back on Bactrum (an antibiotic) when his infection flared up last Friday. He had taken this medicine previously for three straight weeks with no problem. However, it was a different story this time. When Logan's grandparents watched him last weekend, they said he was spitting the medicine out and gagging on it. It was the same ordeal when he got home. Just the sight of the medicine bottle would freak him out...let alone trying to put it in his mouth. I thought that maybe he had decided grape was not his flavor anymore, so I had the pharmacy add bubble gum flavor to it. Unfortunately, that did not help and it only made the smell worse.
During the daytime, Sally said it was like a switch...one minute he would be fine and then the next minute he would be screaming...so unlike him. At night....it was a nightmare. For four straight nights, we started bedtime at 6:30 (irrigation, bath, bottle) and did not get the little man to sleep until 12:30! It was like he was possessed though. He was screaming at the top of his lungs, red in the face, and made himself so hot that we had to change his shirt from the sweat. Nothing would calm him down except rocking in the glider. As soon as we made a move to put him in the crib, the whole process started over. We kept thinking...we'll let him cry it out, he's got to be exhausted at this point. But even that didn't work. We felt so guilty because we knew he wasn't feeling well, but what else could we do? He had been fed, had his antibiotic and Tylenol...what else was there to do?
Well, finally on Thursday, Sally, his babysitter sent me an email at school. She said that Olin had brought Logan's medicine in a bag that day, and she noticed the prescription for Bactrum. She said that her daughter had been prescribed this medicine like 25 years ago, and it gave her horrible nightmares and made her just wild...not like herself. Then Sally said that she had been on Batrum herself and it made her dizzy and nauseous. By coincidence, Sally's husband is currently taking Bactrum and said the taste was horrible and he was having trouble sleeping too. Sally suggested that maybe this medicine was part of the problem we were having with him. So I called the ENT to check about this and he said we didn't have to give it to him Thursday night since he would be seeing him on Friday morning for pre-op. Well, wouldn't you know...Logan went right to sleep that night and slept for 8 hours straight. The next day Sally said that her sweet baby boy was back to acting like himself. I can't believe it took us so long to realize that the medicine was causing him to act so crazy. Who knew? Thank goodness for Sally's comments. We might be still trying to squeeze that medicine down his throat if she hadn't said anything! It sure would be nice for the doctors to give us a heads up about things like this. You know...possible side effects of the medicine!
As I write, Logan is sound asleep upstairs in his crib! Looks like I will have my spot back in my own bed. That's a good thing too because my mom is staying with me until Friday while Olin is out of town for work. She is going to take care of Logan tomorrow after his surgery. I am so glad to have her help this week. There is lots going on at school with CRCT this week, but on the bright side, I finished my last assignment for my graduate course last night. Only three more classes to go and then I will be planning a graduation party : ) Hopefully, now I will have more time to blog during the week so my posts won't be so long. One last thing...we have Logan's other pre-op appointment with the surgeon for his pull-through surgery on Thursday 4/28. We are hopefully to have the surgery the next week (May 6th).
Saturday, April 16, 2011
Logan Really is Ready for Hollywood...He's got the Hair!
So, Logan's hair is growing in a little like Donald Trump's. We're not quite sure what to do with the front piece (it really is like a "piece") because it is seriously about 2 inches longer than any other hairs on his head. There are lots of silly ways to style it....the comb over, a mohawk, or like Janelle Monae (see above). The other night Olin googled this singer to show me that she and Logan had the same hairdo : ) Pretty funny. We're getting some professional pictures taken next month so I know some action has to be taken. I'm just not sure I can physically do it, but can you go to the haircut place to cut just a few strands???
Honesty is the Best Policy
I've been struggling with what to write about lately, hence the long break in between postings. After reading some of my past entries, I felt like all I did was complain and sound like a "Debbie Downer." So...all week I've been trying to think of the positives to write about, and nothing came to me. So, I'm back at it again, and I'm not going to fake it and pretend like everything is great and wonderful, because in all honesty, it's not. The reason I started this blog was to keep people updated on Logan's progress, but also to allow myself a place to share my experiences of raising a kid with special needs. And lately, it hasn't been easy. I struggle saying that when I know there are tons of families out there that have it way worse than us, but this is my journey, and these are my true feelings.
After Logan's little surgery on 4/1 (ha, I just realized that was April Fools), my spring break began. We didn't have too much planned other than going to my parents for the first weekend and going to a few doctor's appointments (shots and ENT check-up) later in the week. I can't complain too much about a week off from work, but sometimes I think being home is not good for me. I have way too much time to think and analyze and drive myself crazy. By Friday, I was not even feeling like myself and decided a blog was just not enough therapy to help me sort out my thoughts. I am going to start talking to a professional who has no personal connection to me and can give me an outside perspective on everything. It's kind of embarrassing to admit that, and many people would've probably kept that detail to themselves, but what the hell? Why lie? This is what I need right now to help me. If I am not at my best, then I cannot be a good mom to Logan and wife to Olin. On Thursday, Olin left for a weekend trip with friends. Of course, this would be the moment Logan's double ear infection returned. I really began to worry because Thursday night he vomitted like three times after dinner and then woke up with a 101 degree temperature. Knowing that he probably couldn't go to Sally's the next day, and having taken off 3 days of work before Spring Break, I knew I couldn't call in last minute to work again. Reluctantly, I called my parents at 1:00 in the morning. I knew it would probably freak them out when they saw the called id, but I didn't know what else to do. I am so lucky and thankful they were able to drive up at 6:00 the next morning to watch Logan and take him to the doctor. Grumps set up his "office" in our dining room and ZuZu took Logan to the pediatrician at 9:00. He had only been off of the maintenance antibiotic for like 9 days and both ear infections had returned...poor baby. I made a call to the ENT and we are going to do tubes. The date is not set, but the decision is made. Hopefully, that will end this nonsense...he's already been on five different antibiotics! We were also able to move up Logan's "pull through" surgery...just waiting on an official date. We are looking at either the first or second Friday in May. While he is such a trooper during the irrigations, I just don't know if Olin and I can do it for another 8-9 weeks. I think it takes its toll on us even if we don't really realize it. Selfishly, I also decided I didn't want to start the summer off with his surgery and recovery. I just want it to be over and done with by then so we can enjoy our summer at the pool :)
Therapy update: Things are going pretty well minus one minor "freak out" by me last week. I guess you could say Logan is learning to exert his will in his own little way now. I forget sometimes that he is 15 months old, and any other 15 month old would be into everything, saying "no", and testing the boundaries. So...last Sunday I began to worry because Logan would not pull up or stand and hold on to his crawling track. He had been doing really well with these tasks, and then it was like overnight, he decided he could not/would not do it. Fortunately, we had a PT appointment on Monday so Sherri could help us figure out what was going on. It was so weird...I would try to lean him against the ottoman (or anything) to stand, and he would immediately collapse his legs. He would pull them into his body and refuse to put weight on them. My first thoughts were...okay, he fractured something in his foot, or else he has seriously forgotten how to stand up (my worst fear). The crazy thing though was that if I turned him to face me, he had no problem putting weight on his legs and even bounce. So... that threw both of my theories out the window. When Sherri arrived and asked how everything was going, my eyes immediately got teary and I started to explain. She was very calm and told me just to hold on, and she would try to figure it out. Luckily he did the same thing for her so she could see how he was just giving up on certain activities. We tried all different positions and offered all different toys, but the same thing kept happening. Sherri said that we had ruled out it was anything physical or mental because he could do what we wanted if he turned to one of us. The only thing it could be was behavioral. Logan simply didn't want to stand in those positions, and pulling his legs in and acting like a wet noodle was his way of exerting his independence. Interesting lesson learned by me. I am going to have to be more aware of the different ways Logan will communicate with us. He is doing better a week later, still not always wanting to stand, but more so than not. We also went back to a few basic moves at therapy this week...weight bearing on his arms, side sitting, etc. Sherri also talked to me about getting flashcards to use with Logan while he sits in his highchair or plays with toys. She says the more we can reiterate vocabulary and point to things, the better. Pointing will most likely be a major way of communication for him. As he gets a little older and we have more resources, I'm sure technology will play a big part in his life as well. Olin said many of the parents in our Mowat-Wilson google group use iPads and different apps to communicate with their children. Pretty amazing what technology can do. I don't want to wish the time away, but I can't wait until we can get Logan in a special needs school with all of the resources he needs all day long! 
Hopefully, I didn't sound too much like "Debbie Downer" tonight. It's kind of weird sitting at home with no baby or no husband. The in-laws took Logan for the weekend because I had a work thing today and tennis tomorrow. I think the highlight has been taking a three hour nap this afternoon...man, I miss those. Back to reality tomorrow, but it's been really nice to recharge today (and sleep in tomorrow)!
Sunday, April 3, 2011
Bring on Hollywood!
Disclaimer: The following material may not be suitable for the faint of heart.
My oh my, where to begin? Well, Logan is now a part of the latest Hollywood rage...colonic irrigations. Unfortunately, his irrigations aren't to get "red carpet" worthy, but to prepare his little bowels for his pull through surgery in June. The doctor originally thought suppositories and enemas would be the recipe for success, but apparently even those aren't enough to keep Mr. Logan clean and clear.
Let me back up (ha...no pun intended...let's just say the jokes are endless around our house lately!) to last Monday. After his morning bottle, Logan didn't want anything to do with food. You've seen his thighs so you know this is not typical. I ended up staying home on Monday because Sally was sick, and over the course of the day, he only drank that one 8 oz. bottle and 2 jars of baby food. Olin had a late dinner that night for work and I was finishing taxes with his mom, so unfortunately, I did not give him his suppository. Olin's dad stayed home with the baby the next day, and it was more of the same. We'd put the bottle in his mouth and he'd just sit there like he didn't know what to do with it. He'd occasionally thrust his tongue around it, but that was it. Was it possible that he had forgotten how to suck? I have to tell you this is my biggest (well, one of) fears about Logan and his syndrome- that he will just one day forget how to do some of the things he used to be able to do. I've read stories about kids who were doing lots of things...babbling, socializing, etc. and then all of the sudden, one day, they couldn't do it anymore. This thought absolutely terrifies me. I can't imagine all of the hard work and successes erased in one instance...how heartbreaking. (If you have read these stories, please don't pass them on to me..ha).
Anyways, I ended up taking Logan to the pediatrician Tuesday afternoon just to be on the safe side. He didn't have a fever, no vomiting, no diarrhea (the kid's never had that in his life), no ear infection, a little bit of a red throat, but that was all she could find. During our nightly poop-a-thon, we gave Logan one suppository and two enemas....and NOTHING came out! Is that even possible? Well, by 10 P.M. Tuesday night, "mother mode" kicked in and I told Olin I thought we needed to take Logan to the ER. All I could think about was how the debacle of his Exploratory Laparotomy began...by his not eating...and look where we ended up with that. I knew Olin wasn't completely convinced that an ER visit was necessary, but he said he'd go with what I felt in my gut...and my gut was saying something was wrong! If it turned out to be nothing, oh well, I would swallow the $100 co-pay.
As much as I hate going there, we are very lucky to have Children's Healthcare not too far away. The wait wasn't long and we had Logan in a room pretty quickly. (Side note: Over my spring break, I definitely am planning to write some literature about Logan...like a one page synopsis of Logan's medical history, including dates, doctors, background info on Mowat-Wilson, etc. I can't keep up with it all and just having a sheet to hand out to people would answer 99% of their questions). So...I immediately felt like the ER doctor thought we were crazy to have brought Logan into the hospital. He was kind of like..."Oh, he hasn't eaten for 2 days? Yeah, kids do that. Eventually he'll get thirsty enough that he'll start drinking again." Seriously??? The on-call doctor I had talked to earlier actually suggested it could be a fungal infection in his esophagus because of the continuous antibiotic he's been on for his ears. The ER doctor dismissed this right away..."I have no idea why he would think that." That is when I get so frustrated with doctors. Finally, he decided to do an x-ray of Logan's abdomen just to be sure there was not an obstruction or blockage. Result: No obstruction...just a lot of backed up crap! After that, I insisted on showing the doctor how Logan was refusing his bottle. Well, if the little booger didn't just make liars out of us ...he immediately began drinking like it was no big thing. It was like when you bring your car into the shop so they can hear the funny sound it's making, and then you get there and there isn't any sound to be heard! With that, the doctor sent us on our way.
I knew Logan's surgeon wouldn't be happy to hear that he was still so constipated even with the enemas and suppositories. I gave him a call Wednesday morning, and within a few hours we had a "Disimpaction" surgery scheduled for Friday morning. Basically, the doctor wanted us to begin colonic irrigations since the enemas weren't doing an adequate job. However, he didn't think they would be as effective if he didn't just go in and clear Logan out once and for all before we started the new routine. Of course, during this "shitty" week we were having, it was one of Olin's busiest at work...the week before the Final Four. It was also the week before my spring break...great timing, right? Luckily, my mom was able to come down on Thursday to help me take Logan to the hospital on Friday. Oh yeah, and I had a stomach bug on Thursday and Friday to cap it off. I couldn't even drive us to the hospital, and I slept more in the hospital bed than Logan did!
The surgery went well. It's a little misleading to call it surgery because no incisions were made. However, he did have to go under anesthesia. The procedure was really quite simple...the doctor extracted as much "stuff" as he could manually, and then flushed 2.5L of fluid through him to make sure all systems were clear (I warned this was not for the faint of heart)! Logan is such a little trooper though. He was a little agitated coming off of the anesthesia, but other than that, he was back to normal within a few hours. I think the whole thing was a lot worse for me than it was for him!
So now Logan joins the Hollywood elite with his participation in colonic irrigations. This is the fun part...Mommy and Daddy now have to "irrigate" Logan twice a day (once before I leave for work at 6:30 A.M) and once before bed. I think we are going to make a paper chain and cut a link each time we perform our duty : ) We have to keep up this routine until his surgery in June. I know you're dying to hear the details of this dirty task so let me proceed. By the way, there will be no Youtube videos documenting this part of Logan's journey!
We really are trying to make the best of the situation and find some humor (bathroom) in it all, but it sucks. That's the truth. There are thousands of things I would rather do than give my 15 month old colonic irrigations twice a day. Luckily Olin has a positive outlook about the whole thing and we've been able to laugh a lot which keeps us from crying : ) Olin is the "tube feeder" and "syringe squeezer" while I am the "leg holder" and "pet pad rotator". Let me try to give you a visual picture here....
Olin and I are outfitted in gloves (and soon to be masks, I think) while Logan lays on a changing table pad that is wrapped in a dark garbage bag and layered with three doggy training pads. We turn Logan on his side so that Olin can feed an 18 inch long red catheter up his booty (it's the craziest thing to watch this little tube disappear until just about an inch sticks out!) Then Olin shoots 2oz of saline solution into the catheter and we let it drain out (isn't this fun?). Then Olin shoots 2 more oz. of solution. We repeat this pattern 12 times for a total of 24oz of fluid being flushed through Logan's little (well, big) intestine. It's not pretty...it smells like shit...but bless his little heart, Logan doesn't cry a bit. Most of the time he's wiggling his legs in excitement or anticipation. I think it must feel so good to have his system so clear. There is no telling how badly his tummy has been hurting all of this time! We timed ourselves last night and the whole process took about 30 minutes from start to finish (of course, Lo needs a bath or at least a good rinse when it's over). By this morning, we had improved our time to 17 minutes. Olin says we're like a pit crew at Nascar : ) Hopefully, with a little more practice, we'll be down to less than 15 minutes. Luckily this week is spring break for me so we have a little extra time to do the deed in the morning. The first real test will be when I go back to work and I have to wake up both boys at 6:00 in the morning to irrigate. The second big test will be when one of us is out of town or has to work late. This definitely seems like a two man job so it will be interesting to see how one person manages the task. Maybe we'll build Logan some baby stirrups : )
So, in a nutshell, that has been our week...shitty, crappy, whatever you want to call it. But for now (until June) ...it is Life As We Know It : )
My oh my, where to begin? Well, Logan is now a part of the latest Hollywood rage...colonic irrigations. Unfortunately, his irrigations aren't to get "red carpet" worthy, but to prepare his little bowels for his pull through surgery in June. The doctor originally thought suppositories and enemas would be the recipe for success, but apparently even those aren't enough to keep Mr. Logan clean and clear.
Let me back up (ha...no pun intended...let's just say the jokes are endless around our house lately!) to last Monday. After his morning bottle, Logan didn't want anything to do with food. You've seen his thighs so you know this is not typical. I ended up staying home on Monday because Sally was sick, and over the course of the day, he only drank that one 8 oz. bottle and 2 jars of baby food. Olin had a late dinner that night for work and I was finishing taxes with his mom, so unfortunately, I did not give him his suppository. Olin's dad stayed home with the baby the next day, and it was more of the same. We'd put the bottle in his mouth and he'd just sit there like he didn't know what to do with it. He'd occasionally thrust his tongue around it, but that was it. Was it possible that he had forgotten how to suck? I have to tell you this is my biggest (well, one of) fears about Logan and his syndrome- that he will just one day forget how to do some of the things he used to be able to do. I've read stories about kids who were doing lots of things...babbling, socializing, etc. and then all of the sudden, one day, they couldn't do it anymore. This thought absolutely terrifies me. I can't imagine all of the hard work and successes erased in one instance...how heartbreaking. (If you have read these stories, please don't pass them on to me..ha).
Anyways, I ended up taking Logan to the pediatrician Tuesday afternoon just to be on the safe side. He didn't have a fever, no vomiting, no diarrhea (the kid's never had that in his life), no ear infection, a little bit of a red throat, but that was all she could find. During our nightly poop-a-thon, we gave Logan one suppository and two enemas....and NOTHING came out! Is that even possible? Well, by 10 P.M. Tuesday night, "mother mode" kicked in and I told Olin I thought we needed to take Logan to the ER. All I could think about was how the debacle of his Exploratory Laparotomy began...by his not eating...and look where we ended up with that. I knew Olin wasn't completely convinced that an ER visit was necessary, but he said he'd go with what I felt in my gut...and my gut was saying something was wrong! If it turned out to be nothing, oh well, I would swallow the $100 co-pay.
As much as I hate going there, we are very lucky to have Children's Healthcare not too far away. The wait wasn't long and we had Logan in a room pretty quickly. (Side note: Over my spring break, I definitely am planning to write some literature about Logan...like a one page synopsis of Logan's medical history, including dates, doctors, background info on Mowat-Wilson, etc. I can't keep up with it all and just having a sheet to hand out to people would answer 99% of their questions). So...I immediately felt like the ER doctor thought we were crazy to have brought Logan into the hospital. He was kind of like..."Oh, he hasn't eaten for 2 days? Yeah, kids do that. Eventually he'll get thirsty enough that he'll start drinking again." Seriously??? The on-call doctor I had talked to earlier actually suggested it could be a fungal infection in his esophagus because of the continuous antibiotic he's been on for his ears. The ER doctor dismissed this right away..."I have no idea why he would think that." That is when I get so frustrated with doctors. Finally, he decided to do an x-ray of Logan's abdomen just to be sure there was not an obstruction or blockage. Result: No obstruction...just a lot of backed up crap! After that, I insisted on showing the doctor how Logan was refusing his bottle. Well, if the little booger didn't just make liars out of us ...he immediately began drinking like it was no big thing. It was like when you bring your car into the shop so they can hear the funny sound it's making, and then you get there and there isn't any sound to be heard! With that, the doctor sent us on our way.
I knew Logan's surgeon wouldn't be happy to hear that he was still so constipated even with the enemas and suppositories. I gave him a call Wednesday morning, and within a few hours we had a "Disimpaction" surgery scheduled for Friday morning. Basically, the doctor wanted us to begin colonic irrigations since the enemas weren't doing an adequate job. However, he didn't think they would be as effective if he didn't just go in and clear Logan out once and for all before we started the new routine. Of course, during this "shitty" week we were having, it was one of Olin's busiest at work...the week before the Final Four. It was also the week before my spring break...great timing, right? Luckily, my mom was able to come down on Thursday to help me take Logan to the hospital on Friday. Oh yeah, and I had a stomach bug on Thursday and Friday to cap it off. I couldn't even drive us to the hospital, and I slept more in the hospital bed than Logan did!
The surgery went well. It's a little misleading to call it surgery because no incisions were made. However, he did have to go under anesthesia. The procedure was really quite simple...the doctor extracted as much "stuff" as he could manually, and then flushed 2.5L of fluid through him to make sure all systems were clear (I warned this was not for the faint of heart)! Logan is such a little trooper though. He was a little agitated coming off of the anesthesia, but other than that, he was back to normal within a few hours. I think the whole thing was a lot worse for me than it was for him!
So now Logan joins the Hollywood elite with his participation in colonic irrigations. This is the fun part...Mommy and Daddy now have to "irrigate" Logan twice a day (once before I leave for work at 6:30 A.M) and once before bed. I think we are going to make a paper chain and cut a link each time we perform our duty : ) We have to keep up this routine until his surgery in June. I know you're dying to hear the details of this dirty task so let me proceed. By the way, there will be no Youtube videos documenting this part of Logan's journey!
We really are trying to make the best of the situation and find some humor (bathroom) in it all, but it sucks. That's the truth. There are thousands of things I would rather do than give my 15 month old colonic irrigations twice a day. Luckily Olin has a positive outlook about the whole thing and we've been able to laugh a lot which keeps us from crying : ) Olin is the "tube feeder" and "syringe squeezer" while I am the "leg holder" and "pet pad rotator". Let me try to give you a visual picture here....
Olin and I are outfitted in gloves (and soon to be masks, I think) while Logan lays on a changing table pad that is wrapped in a dark garbage bag and layered with three doggy training pads. We turn Logan on his side so that Olin can feed an 18 inch long red catheter up his booty (it's the craziest thing to watch this little tube disappear until just about an inch sticks out!) Then Olin shoots 2oz of saline solution into the catheter and we let it drain out (isn't this fun?). Then Olin shoots 2 more oz. of solution. We repeat this pattern 12 times for a total of 24oz of fluid being flushed through Logan's little (well, big) intestine. It's not pretty...it smells like shit...but bless his little heart, Logan doesn't cry a bit. Most of the time he's wiggling his legs in excitement or anticipation. I think it must feel so good to have his system so clear. There is no telling how badly his tummy has been hurting all of this time! We timed ourselves last night and the whole process took about 30 minutes from start to finish (of course, Lo needs a bath or at least a good rinse when it's over). By this morning, we had improved our time to 17 minutes. Olin says we're like a pit crew at Nascar : ) Hopefully, with a little more practice, we'll be down to less than 15 minutes. Luckily this week is spring break for me so we have a little extra time to do the deed in the morning. The first real test will be when I go back to work and I have to wake up both boys at 6:00 in the morning to irrigate. The second big test will be when one of us is out of town or has to work late. This definitely seems like a two man job so it will be interesting to see how one person manages the task. Maybe we'll build Logan some baby stirrups : )
So, in a nutshell, that has been our week...shitty, crappy, whatever you want to call it. But for now (until June) ...it is Life As We Know It : )
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