Silly me... I actually believed that Ari's most recent esophageal surgery and subsequent esophagram that showed how water helped him swallow would have "fixed" his problem with food impactions. Why would I allow myself to go down this path of naive hope?
Food started to get stuck around mid-March. At first the episodes were spaced out, but the frequency slowly increased. We wrote it off as not chewing well or not drinking enough and continued to spend entire meals saying "Small bites!" "Chew better!" "DRINK!".
Reality settled in for Larry and I and we knew this pattern was going to continue. Looking ahead, we once again wondered how we would manage meals, school, and countless doctor appointments. "Next year will be better... we'll be over this hump... he'll be older..." These are all words we've said before. Knowing about the pending bladder and possible spinal cord surgery, we made a life changing decision for our family. I resigned from work.
Now, it may surprise some of you to learn that I worked full time, returning out of necessity just 5 days after Ari was home from the NICU. For those that know me well, the surprise lies in the fact that I am able to step away from a professional career. Working from home in a sales job (I left management when pregnant with Ari), I found ways to balance appointments, surgeries, and emergencies while still keeping up with my job responsibilities.
I made two major mistakes in my career within 18 months of each other. First, I left the Fortune 500 company where I was respected and successful and they supported my family situation. I believed that leaving would allow me to escape the stigma of being the mom of a child with special needs. They saw me go through so much and I wanted a fresh start. As I reflect on the situation, it was more of an escape that new venture, but I didn't know it at the time. I'm embarrassed that I felt this way, because now that "stigma" is my badge of honor and I wear it with pride.
A few months into the new job, Ari required 2 procedures a week for 12 weeks to try to surgically "stent" his esophagus and my company's reaction was less than supportive. They added geography to my territory and increased my travel to 3-5 days a week, even requiring me to miss his third birthday. I begged them to allow me to go to this training session late. Their answer? "He's young... lie to him about the date. He'll never know." I was heartbroken... I went to the training, winning first place honors for both sales and presentation skills and resigned soon after.
Mistake number two was selling myself short. Feeling defeated from the last experience, I decided to take the easy route... maybe I could no longer handle a high-level job and my family situation? I accepted a position that was significantly below my skill and pay level. This was a really, REALLY bad idea... After voluntarily going part-time to better manage Ari's appointments and recent surgery, I decided it was best to resign and focus on the family.
To celebrate my new stay-at-home status, I took the kids (plus one of Liv's friends) to the gulf coast for Spring Break. Larry had to stay behind to work. While there, Ari had 3 major choking episodes. One was so bad, it caused panic to set in... I was the only adult with 3 kids and the local hospital would not be able to handle his needs. I searched the Internet on my phone for the closest major pediatric hospital and contacted friends vacationing along 30-A to see if they could take the girls. Thankfully, he eventually got the food out on his own. At another point, I had the leave the girls alone in a restaurant while I took him outside to regurgitate a food impaction. I kept running to the window to look in at them and then to Ari's aid, feeling overwhelmed and helpless.
We got home on a Thursday and by that Saturday, Ari had food stuck to the point where he couldn't swallow his saliva for 8 hours. I arrived at the ER on Saturday night and they were expecting us. Ari was prepped for surgery and we were swiftly taken to surgical pre-op where he waited for a midnight procedure.
When the anaesthesiologist came in, Ari put on his "brave face" that I've mentioned before. Mouth in a deep frown, brows furrowed, and chin quivering... he refused to cry. If there exists a moment in time when I can explain the true feeling of heartbreak, this is it. It's sadness, pain, and nausea all at once plus the deep desire to shout out loud (but what would I say?) and hold my baby close. "It's OK to cry." I told him. He shook his head no, frowned deeper and raised his chin in bravery.
"It breaks my heart." I said, more to myself than anyone else. "Me too." The anaesthesiologist added. Surprised, I looked up and his eyes had filled with tears. He looked away, cleared his throat, and got back to business. Later, one of the nurses told me that no one had ever seen him emotional over a patient, but he was extremely touched by Ari's bravery and medical history.
Click the link to see his pre-op video here. You'll get a glimpse of his brave face toward the end, after I say "I love you". His words that are hard to understand are, "Mommy, I'm scared."Ari pre-op 4.7.12
It took two hours and 50-60 entries into Ari's esophagus to get out all of the food, piece by piece. We were admitted as inpatient and when the GI who performed the surgery (one of Dr. Blumenthal's partners and ironically the same one who was on call for Ari's last emergency procedure) came out to talk to me, he gave me a look that I've seen from other doctors in the past. It's one that can only be described as hopeful and sympathetic at the same time. Making the sign for The Father, Son, and The Holy Spirit, he said a prayer, adding "I am not a practicing Catholic anymore, yet I feel compelled to pray for your son." I found comfort in this, just as I do when his pediatrician ends most appointments with "I'll pray for you". There are so many things I love about The South, and unabashed displays of faith, regardless of religious belief, are one of them. Home by lunch, we slipped right back into our normal routine.
The last two weeks have been filled with appointments and triumphant lines through my to-do list. Ari's urology appointment provided some clarity as well as reassurance in my decision to resign. We cannot schedule the Mitroffanof (hole to catheterize his urine through his belly button) until after he has a spinal MRI (late June), a likely re-release of his tethered spinal cord, a urodynamics study 3 months later, THEN the Mitroffanof created, a 10-12 week recovery, another urodynamics study, and a possible bladder augmentation. This is all in addition to any esophageal problems.
No worries... NEXT year will be better... We'll be over this hump.
Sound familiar?
Inspiration . Courage . Roar. The story of Ari Shumbres and our life surrounding his 100+ intubated surgeries and procedures.
Monday, April 23, 2012
Friday, March 23, 2012
Handle with Care
Ari is at an age where he talks non-stop, his face animated in imitation of adults. I often stop and focus on the moment, hoping to burn the conversation in my memory so one day I can tell him, "When you were little, you once told me...".
But this past week, he said something that I cannot get out of my mind, regardless of how hard I try.
He started with, "When I'm not fragile anymore, can I ..."
I don't remember what he wanted to do, but I do remember the feeling of my chest tightening and nausea in my gut. "He's starting to get it." I thought to myself.
"Ari! You're not fragile- why would you say that?" I responded.
"Mom, remember?!?" he replied, lifting up his shirt to show me the map of scars and buttons on his belly and back. "Remember what Dr. Bleacher just fixed? My secophagus?!? I have scars and buttons and go to doctors all the time and get needles? How did you forget?!" To punctuate the last part, he smacked him palm on his forehead in disbelief.
He was serious and gravely concerned that his own mother did not know about his current state.
"I didn't forget." I told him, pulling his shirt back down. "I just don't look at you as fragile. You can do anything you want to do."
"But Mom," he said, "I AM fragile. BUT one day I'm gonna be big, big, big like Daddy," his arms reached way up high, "and I won't be fragile anymore and I'll ride the BIG Coasters at Disney World and bring MY kids on the coasters, too. And when I'm not fragile, I'm gonna play sports like my friends and go to a big kid school like college. I may even play football like Daddy. But I'm fragile now, and I can't do that... but one day... Can I?" He looked at me with hope and worry in his eyes.
"Yes, Baby... one day you can do all of that." I answered, choking back tears and giving him a great big hug and kiss. He wiped his mouth and patted his heart. "There," he said, "I put it in my heart for later."
He happy-danced away and once he turned the corner, I sat down and sighed.
The truth is, I don't really know what he will be able to do or not do. Will his trachea collapse in the middle of an important game or musical performance, momentarily taking his breath away? Could his body handle sliding into first or twisting to swing a golf club? What if he fell on his bottom, where the spine is bony and deformed?
I let the subject drop, but Ari brought it up again yesterday. He was playing independently while I was making dinner and came across a valentine from a classmate. He pretended to read it.
"Dear Ari. I hope you feel better soon and I hope you're not fragile anymore one day."
I once again got the gut-tightening feeling, but this time opted to redirect.
"Want to be my helper?" I asked.
"Oh, oh, oh yes!" He answered and ran to get the step stool.
They were the best grilled cheese sandwiches ever.
But this past week, he said something that I cannot get out of my mind, regardless of how hard I try.
He started with, "When I'm not fragile anymore, can I ..."
I don't remember what he wanted to do, but I do remember the feeling of my chest tightening and nausea in my gut. "He's starting to get it." I thought to myself.
"Ari! You're not fragile- why would you say that?" I responded.
"Mom, remember?!?" he replied, lifting up his shirt to show me the map of scars and buttons on his belly and back. "Remember what Dr. Bleacher just fixed? My secophagus?!? I have scars and buttons and go to doctors all the time and get needles? How did you forget?!" To punctuate the last part, he smacked him palm on his forehead in disbelief.
He was serious and gravely concerned that his own mother did not know about his current state.
"I didn't forget." I told him, pulling his shirt back down. "I just don't look at you as fragile. You can do anything you want to do."
"But Mom," he said, "I AM fragile. BUT one day I'm gonna be big, big, big like Daddy," his arms reached way up high, "and I won't be fragile anymore and I'll ride the BIG Coasters at Disney World and bring MY kids on the coasters, too. And when I'm not fragile, I'm gonna play sports like my friends and go to a big kid school like college. I may even play football like Daddy. But I'm fragile now, and I can't do that... but one day... Can I?" He looked at me with hope and worry in his eyes.
"Yes, Baby... one day you can do all of that." I answered, choking back tears and giving him a great big hug and kiss. He wiped his mouth and patted his heart. "There," he said, "I put it in my heart for later."
He happy-danced away and once he turned the corner, I sat down and sighed.
The truth is, I don't really know what he will be able to do or not do. Will his trachea collapse in the middle of an important game or musical performance, momentarily taking his breath away? Could his body handle sliding into first or twisting to swing a golf club? What if he fell on his bottom, where the spine is bony and deformed?
I let the subject drop, but Ari brought it up again yesterday. He was playing independently while I was making dinner and came across a valentine from a classmate. He pretended to read it.
"Dear Ari. I hope you feel better soon and I hope you're not fragile anymore one day."
I once again got the gut-tightening feeling, but this time opted to redirect.
"Want to be my helper?" I asked.
"Oh, oh, oh yes!" He answered and ran to get the step stool.
They were the best grilled cheese sandwiches ever.
Monday, March 19, 2012
Tornados
I've been avoiding you...
Please don't take it personal. Updates are easy when there's only one primary focus, but when the things start to pile up, I just try to get through each day without looking back.
For some of my long-time readers, you may recall a Care Page post where I compared my emotional state to Alice in Wonderland falling down the rabbit hole. On the outside, she looked composed, wearing a sweet dress and grabbing a cup of tea as she continued her downward decline. Not really scared, but lost and falling without knowing what she would find and when it would end.
There are times I still feel a bit like Alice in my own Wonderland, but lately the rabbit hole has transitioned to a tornado, spiraling 'round and 'round, with a calm void in the center of the vortex. Things seem normal, but in reality it's spinning rapidly and growing by the day, with no clear vision on how to make it slow.
There are phrases Larry and I say over and over. Phrases like "Things will calm down when..." "We'll feel more settled when..." "We'll be able to do that when..."
I have come to the conclusion that "when" may not really exist in our lives, because "when" is always morphing... and I'm ok with that. So "when" we get past this current stage on our lives, I'll start writing more, and the tornado just may get downgraded to a tropical storm.
Post-op, Ari's recovery was great. We slowly transitioned him back to food, focusing on purees and smoothies. His worst case scenario would be to get food stuck in his esophagus and have to go back into surgery to get it removed while the esophagus was still healing.
Soon after he started eating, that's exactly what happened. Of all things, mashed potatoes and soft ground beef blocked his esophagus. It was completely blocked- not even his own saliva could pass. We were baffled as to how this could happen. He was chewing and taking a drink every few bites. He usually would try to regurgitate the stuck food back up, but his esophagus and ribs were still too sore from the surgery to withstand the retching. The blockage was painful- it broke my heart to watch him struggle helplessly. I sat, cradling him in my arms, catching his saliva in a paper towel as he spit it out, still unable to swallow.
Larry told me I wasn't helping him, which I knew. We had to either assist his in regurgitating the food or bring him to the hospital. Allowing it it sit in the esophagus increased the risk of aspiration. That's when Larry had "The Idea". One that later prompted his surgeon to say "As a trauma surgeon, I do not advocate that technique, though I am impressed with your resourcefulness and the results." Ha!
Larry suggested sitting Ari on the trampoline as he gently bounced to see if the food would dislodge. Usually a few jumping jacks and some dancing helps his get the food up, so this technique is not far off from a methodology standpoint, but it just seemed wrong. I was totally against it. "It's better than another surgery." Larry countered. I gave in.
A few minutes of bouncing and Ari's color came back. "Food's not stuck anymore." he said, and confirmed it by drinking some water. Larry's off the wall technique actually worked.
Now for the question... if the esophageal webbing and pouch were removed, why would food get stuck? Afraid of another blockage, Ari fought eating. His weight dropped to 30 pounds and food continued to get stuck. Worry had once again set in for Larry and I. Ari looked frail and we were supposed to go to Orlando the next week for a cheer competition for Liv. The whole family was going and the mini vacation was so needed. Concerned over Ari's weight, his GI put him on an antihistamine that had a side effect of an appetite stimulant. It seemed to work, but he was still choking.
Contingency plans were made for Larry and Ari to stay home, which saddened all of us. We already did a Disney trip when the 2 of them stayed home and Liv and I went with my parents and my brother's family. Our subsequent Disney trip ended when we had to leave the park via ambulance and spent the rest of the vacation, and Thanksgiving, in the hospital. We really wanted the break... together.
The weekend before Orlando was a fun one for the family. We left the weight our current situation behind and spent Saturday at The University of Georgia Dance Marathon benefiting Children's Healthcare of Atlanta (CHOA). Liv got to hang out with MattyB, a talented 9 year old who has an impressive YouTube following (over 100,000,000 hits!) for his rap videos. His mom and I were connected through a mutual friend and he was looking to film a video for his original song "That's the Way" at CHOA, which turned out to be a challenge. I got her in touch with the Dance Marathon organizers and he was able to film there... and Liv is in the video! Even more, MattyB has a video blog and he interviewed Liv and Ari. Here's the link. MattyB Raps interview with Liv and Ari at UGA Dance Marathon Ari's dance move is so funny! MattyB is so sweet as he bends down to talk to Ari. He and Liv got along well and played all day. It was, without a doubt, the most perfect, normal day we had in a long time. Here is the link for music video, too. Liv is the one in the pink shirt and giant Uggs. :) Ari makes a brief, shy appearance in the front row by Liv. MattyB Raps "That's the Way" video
On Monday morning, I woke up, ready to conquer the growing to-do list of calls and appointments for Ari and preparing for our trip to Orlando. My alarm went off and as I reached for my phone, I saw missed calls and texts from my mother- sent at 11 pm the night before and 3 am that morning. Panicked, I called her back to see what was wrong.
"We just got back from the hospital." She told me, "Dad fell."
Damn it!! How did I miss her call? I check my phone volume obsessively every night before bed to make sure I am available in case of emergency. I looked at it again and noticed the silence switch on the side was on. I must had caught it with my nail after turning up the volume. If there is a word that goes beyond awful, that is how I felt.
"What happened?" I asked.
"He was letting the dog out and she escaped off the leash, running toward another dog. Dad ran after her, slipped, landed on his new hip, and rolled into the street. He was unable to get up... we had to call an ambulance. The ER doc said it was just muscular, but he couldn't even walk to the car. I don't know what we're going to do."
I got Liv dressed and out the door for school and went straight to my parent's house. Something wasn't right. My father couldn't even stand with his walker that he still had from his recent hip replacement. Attempting to move made him break a sweat and almost pass out from pain.
I got his pain meds in order and watched him suffer. It was gut-wrenching to see. Mid-morning we received a phone call from the Emergency Department. The Radiologist read his x-rays again and they had missed a fractured femur during his visit the night before.
I immediately called his hip doctor and spoke to his nurse, explaining the pain, difficulty of movement and femur fracture to her, strongly suggesting that my father be in the hospital. I also requested that his surgeon look at the x-rays and call me to discuss a plan. In a patronizing voice, she told me that I needed to understand the difference between urgent and emergent and my father was not emergent. She also told me that his surgeon would not view the x-rays that day because he was in the OR and didn't want to bother him.
I wanted to tell her that I, of all people, understand the difference between urgent and emergent. I LIVE urgent and emergent, but I didn't... Instead I suggested he view the images in-between cases. Within a few hours, the surgeon called us personally and told us to get to hospital immediately- the fracture was severe. Back to the hospital via ambulance and on IV painkillers, he was finally able to rest. We requested a subsequent x-ray to compare to the original one and further damage had occurred. His femur was shattered at the top and vertically split down the middle. The surgery required removal and cleaning of the bone fragments, banding it back together and multiple blood transfusions.
While my father was in the hospital, Ari had another esophagram. This time, we did it standing up with food dipped in barium. What we saw left us silenced and nodding. It was the "ah ha" moment we needed.
Starting with just barium, which is the texture of a milkshake, Ari swallowed. His swallow was strong and then the barium stopped in a new pouch exactly where the esophageal pouch existed before. It just sat, not going anywhere. "Let's give him a sip of water." I suggested. Whoosh... the barium went right down, only slowing again at the narrowing to his Nissen Fundoplication (the upper curve of his stomach is wrapped around the esophagus and sewn into place to inhibit food from coming back up).
Intrigued, we moved to a piece of banana. The same thing happened. This time we gave him two bites. All it did was make the pouch bigger. Again, nothing moved past this spot. One big swig of water and down it went. We tried 2 more foods and saw the same thing. It appears that Ari does have any peristalsis (the wave pattern of the esophageal muscles as it "squeezes" food down). We knew it was slow, but I don't think any of us, doctors included, knew it was nonexistent.
Here we thought texture was the problem, when all he needed to do is chew well and drink after every bite. We were excited and bewildered to find this out. Since then, Ari has been eating, and eating, and eating, weighing in at a hefty 35 pounds. He still chokes occasionally, but his confidence and self-monitoring is apparent.
All four of us made it to Disney World the following weekend. Though the trip was not issue-free for Ari, it was all within the realm of our normal.
Home and back into a routine, my days are packed with a do-to list that's never complete... But it doesn't matter. I don't have to wait for my "when" to be happy. I've relaxed a bit- taking time to crack-up laughing with friends, enjoying little moments, and cherishing my time with family. It's important that I genuinely appreciate my "now" because I have a suspicious feeling that my "now" very well could be yesterday's "when" and that could mean the tornado has started to slow down... at least for now.
I'll still have my helmet and shoes in a safe place... just in case...
Please don't take it personal. Updates are easy when there's only one primary focus, but when the things start to pile up, I just try to get through each day without looking back.
For some of my long-time readers, you may recall a Care Page post where I compared my emotional state to Alice in Wonderland falling down the rabbit hole. On the outside, she looked composed, wearing a sweet dress and grabbing a cup of tea as she continued her downward decline. Not really scared, but lost and falling without knowing what she would find and when it would end.
There are times I still feel a bit like Alice in my own Wonderland, but lately the rabbit hole has transitioned to a tornado, spiraling 'round and 'round, with a calm void in the center of the vortex. Things seem normal, but in reality it's spinning rapidly and growing by the day, with no clear vision on how to make it slow.
There are phrases Larry and I say over and over. Phrases like "Things will calm down when..." "We'll feel more settled when..." "We'll be able to do that when..."
I have come to the conclusion that "when" may not really exist in our lives, because "when" is always morphing... and I'm ok with that. So "when" we get past this current stage on our lives, I'll start writing more, and the tornado just may get downgraded to a tropical storm.
Post-op, Ari's recovery was great. We slowly transitioned him back to food, focusing on purees and smoothies. His worst case scenario would be to get food stuck in his esophagus and have to go back into surgery to get it removed while the esophagus was still healing.
Soon after he started eating, that's exactly what happened. Of all things, mashed potatoes and soft ground beef blocked his esophagus. It was completely blocked- not even his own saliva could pass. We were baffled as to how this could happen. He was chewing and taking a drink every few bites. He usually would try to regurgitate the stuck food back up, but his esophagus and ribs were still too sore from the surgery to withstand the retching. The blockage was painful- it broke my heart to watch him struggle helplessly. I sat, cradling him in my arms, catching his saliva in a paper towel as he spit it out, still unable to swallow.
Larry told me I wasn't helping him, which I knew. We had to either assist his in regurgitating the food or bring him to the hospital. Allowing it it sit in the esophagus increased the risk of aspiration. That's when Larry had "The Idea". One that later prompted his surgeon to say "As a trauma surgeon, I do not advocate that technique, though I am impressed with your resourcefulness and the results." Ha!
Larry suggested sitting Ari on the trampoline as he gently bounced to see if the food would dislodge. Usually a few jumping jacks and some dancing helps his get the food up, so this technique is not far off from a methodology standpoint, but it just seemed wrong. I was totally against it. "It's better than another surgery." Larry countered. I gave in.
A few minutes of bouncing and Ari's color came back. "Food's not stuck anymore." he said, and confirmed it by drinking some water. Larry's off the wall technique actually worked.
Now for the question... if the esophageal webbing and pouch were removed, why would food get stuck? Afraid of another blockage, Ari fought eating. His weight dropped to 30 pounds and food continued to get stuck. Worry had once again set in for Larry and I. Ari looked frail and we were supposed to go to Orlando the next week for a cheer competition for Liv. The whole family was going and the mini vacation was so needed. Concerned over Ari's weight, his GI put him on an antihistamine that had a side effect of an appetite stimulant. It seemed to work, but he was still choking.
Contingency plans were made for Larry and Ari to stay home, which saddened all of us. We already did a Disney trip when the 2 of them stayed home and Liv and I went with my parents and my brother's family. Our subsequent Disney trip ended when we had to leave the park via ambulance and spent the rest of the vacation, and Thanksgiving, in the hospital. We really wanted the break... together.
The weekend before Orlando was a fun one for the family. We left the weight our current situation behind and spent Saturday at The University of Georgia Dance Marathon benefiting Children's Healthcare of Atlanta (CHOA). Liv got to hang out with MattyB, a talented 9 year old who has an impressive YouTube following (over 100,000,000 hits!) for his rap videos. His mom and I were connected through a mutual friend and he was looking to film a video for his original song "That's the Way" at CHOA, which turned out to be a challenge. I got her in touch with the Dance Marathon organizers and he was able to film there... and Liv is in the video! Even more, MattyB has a video blog and he interviewed Liv and Ari. Here's the link. MattyB Raps interview with Liv and Ari at UGA Dance Marathon Ari's dance move is so funny! MattyB is so sweet as he bends down to talk to Ari. He and Liv got along well and played all day. It was, without a doubt, the most perfect, normal day we had in a long time. Here is the link for music video, too. Liv is the one in the pink shirt and giant Uggs. :) Ari makes a brief, shy appearance in the front row by Liv. MattyB Raps "That's the Way" video
On Monday morning, I woke up, ready to conquer the growing to-do list of calls and appointments for Ari and preparing for our trip to Orlando. My alarm went off and as I reached for my phone, I saw missed calls and texts from my mother- sent at 11 pm the night before and 3 am that morning. Panicked, I called her back to see what was wrong.
"We just got back from the hospital." She told me, "Dad fell."
Damn it!! How did I miss her call? I check my phone volume obsessively every night before bed to make sure I am available in case of emergency. I looked at it again and noticed the silence switch on the side was on. I must had caught it with my nail after turning up the volume. If there is a word that goes beyond awful, that is how I felt.
"What happened?" I asked.
"He was letting the dog out and she escaped off the leash, running toward another dog. Dad ran after her, slipped, landed on his new hip, and rolled into the street. He was unable to get up... we had to call an ambulance. The ER doc said it was just muscular, but he couldn't even walk to the car. I don't know what we're going to do."
I got Liv dressed and out the door for school and went straight to my parent's house. Something wasn't right. My father couldn't even stand with his walker that he still had from his recent hip replacement. Attempting to move made him break a sweat and almost pass out from pain.
I got his pain meds in order and watched him suffer. It was gut-wrenching to see. Mid-morning we received a phone call from the Emergency Department. The Radiologist read his x-rays again and they had missed a fractured femur during his visit the night before.
I immediately called his hip doctor and spoke to his nurse, explaining the pain, difficulty of movement and femur fracture to her, strongly suggesting that my father be in the hospital. I also requested that his surgeon look at the x-rays and call me to discuss a plan. In a patronizing voice, she told me that I needed to understand the difference between urgent and emergent and my father was not emergent. She also told me that his surgeon would not view the x-rays that day because he was in the OR and didn't want to bother him.
I wanted to tell her that I, of all people, understand the difference between urgent and emergent. I LIVE urgent and emergent, but I didn't... Instead I suggested he view the images in-between cases. Within a few hours, the surgeon called us personally and told us to get to hospital immediately- the fracture was severe. Back to the hospital via ambulance and on IV painkillers, he was finally able to rest. We requested a subsequent x-ray to compare to the original one and further damage had occurred. His femur was shattered at the top and vertically split down the middle. The surgery required removal and cleaning of the bone fragments, banding it back together and multiple blood transfusions.
While my father was in the hospital, Ari had another esophagram. This time, we did it standing up with food dipped in barium. What we saw left us silenced and nodding. It was the "ah ha" moment we needed.
Starting with just barium, which is the texture of a milkshake, Ari swallowed. His swallow was strong and then the barium stopped in a new pouch exactly where the esophageal pouch existed before. It just sat, not going anywhere. "Let's give him a sip of water." I suggested. Whoosh... the barium went right down, only slowing again at the narrowing to his Nissen Fundoplication (the upper curve of his stomach is wrapped around the esophagus and sewn into place to inhibit food from coming back up).
Intrigued, we moved to a piece of banana. The same thing happened. This time we gave him two bites. All it did was make the pouch bigger. Again, nothing moved past this spot. One big swig of water and down it went. We tried 2 more foods and saw the same thing. It appears that Ari does have any peristalsis (the wave pattern of the esophageal muscles as it "squeezes" food down). We knew it was slow, but I don't think any of us, doctors included, knew it was nonexistent.
Here we thought texture was the problem, when all he needed to do is chew well and drink after every bite. We were excited and bewildered to find this out. Since then, Ari has been eating, and eating, and eating, weighing in at a hefty 35 pounds. He still chokes occasionally, but his confidence and self-monitoring is apparent.
All four of us made it to Disney World the following weekend. Though the trip was not issue-free for Ari, it was all within the realm of our normal.
Home and back into a routine, my days are packed with a do-to list that's never complete... But it doesn't matter. I don't have to wait for my "when" to be happy. I've relaxed a bit- taking time to crack-up laughing with friends, enjoying little moments, and cherishing my time with family. It's important that I genuinely appreciate my "now" because I have a suspicious feeling that my "now" very well could be yesterday's "when" and that could mean the tornado has started to slow down... at least for now.
I'll still have my helmet and shoes in a safe place... just in case...
Thursday, February 23, 2012
We're home!
So I'm a little late in writing this post, but with good reason... pure exhaustion from lack of sleep and a really stupid self-inflicted injury.
After a sleepless night at the hospital on Thursday night due to the Ari's bowels "waking up" and gas that had him crying in pain and moving more than his body wanted to allow, Larry and I switched sleeping arrangements. It was Cheersport time in Atlanta and I had a weekend planned with Liv, the A-Towne All-Star family, and 20,000+ other cheerleaders at the Georgia World Congress Center.
Ari had an esophagram (a fluoroscopy study of the esophageal motility) on Friday to check for visible esophageal leaks. When none were seen, he had a popsicle and sat up in a chair for the first time. A huge step for him!
Friday night was smooth for Larry and Ari and Saturday brought a big advancement in his healing- the bedside removal of his chest tube which freed him to take a few steps. Unstable on his feet, he wobbled over to the chair and waited for Liv and I to visit after Day 1 of competing. He was so happy to see her wearing her ATA uniform!
On Sunday, his eating progressed to applesauce and pudding and the doctors decided that he was well enough to go home. After having his central line removed, they were discharged! There was a problem. Liv had not even performed yet and we originally went to the hospital in one car, which I was driving. In stepped my parents, who were very excited to be part of Ari's discharge process. As I cheered on Liv's team, I wondered once again what we would do without them living so close.
Ari's nights were... and still are... not the best. He's having a lot of nightmares yelling "no needles!" "I don't want to be here!" "don't do that to me! It hurts!". It literally breaks our hearts. Additionally, the movement in his sleep in painful at times, though it's getting better. He woke up crying for me six times last night. It's a wonder I actually got Liv to school on time this morning. Larry's out of town for work, or we would have shared the duty.
It took some time for Ari to get his balance and strength back, but now he's his normal, active self.
And now for the stupid injury portion of this blog...
My parents bought the Liv a trampoline, a promise they made to her years ago and had it delivered on Monday. It's HUGE and literally takes up our whole yard. She is beside herself with excitement. So much for all the English garden ideas on my Pinterest Board!
Those who know Larry and I well know that we are not, shall we say, the "handiest" of people. I quickly opened the boxes and convinced Larry to put it together with me. After attempt number one failed (a legitimate mistake), we put it together a second time and it was still not right. My dad came over on Tuesday morning to help while Larry was at work. Somehow, I managed to crush my right pinky between a falling metal bracket and the metal frame. My nail immediately turned dark purple and the throbbing pressure was unbearable. After watching a YouTube video on how to alleviate the pressure behind the nail, I heated up a safety pin, help my breath, and burnt a hole in it. Can you guess where this is going next? Yep... I successfully alleviated the pressure AND successfully inserted an infection directly into my nail bed. Brilliant. A tetanus shot, antibiotics, and a full round of labs later, the trampoline is still not put together.
That English garden is sounding better and better!
I'm amazed at how well Ari is healing, though I'd like to see him put on some weight. We're starting an appetite stimulant tonight and we'll see if that helps at all. Once he gains a few pounds, we'll schedule the spinal MRI (third time's a charm!) and an endoscopy to check out the esophageal healing. We also need to schedule the mitrofanoff surgery... more details on that to come.
For now, we are enjoying some family time, trying to catch up on sleep, and will eventually put together the #^!%* trampoline.
Ari's healing is nothing short of miraculous and I know a lot of it has to do with the support and prayers of all of his friends and family. Larry and I reflected on this often as he spent his time in the hospital looking at pictures friends drew him, watching movies they gave him and snuggling with new stuffed animals. We are overwhelmed by the generosity and love of our family, friends old and new, and Liv's cheer gym- the ATA family... THANK YOU!!
After a sleepless night at the hospital on Thursday night due to the Ari's bowels "waking up" and gas that had him crying in pain and moving more than his body wanted to allow, Larry and I switched sleeping arrangements. It was Cheersport time in Atlanta and I had a weekend planned with Liv, the A-Towne All-Star family, and 20,000+ other cheerleaders at the Georgia World Congress Center.
Ari had an esophagram (a fluoroscopy study of the esophageal motility) on Friday to check for visible esophageal leaks. When none were seen, he had a popsicle and sat up in a chair for the first time. A huge step for him!
Friday night was smooth for Larry and Ari and Saturday brought a big advancement in his healing- the bedside removal of his chest tube which freed him to take a few steps. Unstable on his feet, he wobbled over to the chair and waited for Liv and I to visit after Day 1 of competing. He was so happy to see her wearing her ATA uniform!
On Sunday, his eating progressed to applesauce and pudding and the doctors decided that he was well enough to go home. After having his central line removed, they were discharged! There was a problem. Liv had not even performed yet and we originally went to the hospital in one car, which I was driving. In stepped my parents, who were very excited to be part of Ari's discharge process. As I cheered on Liv's team, I wondered once again what we would do without them living so close.
Ari's nights were... and still are... not the best. He's having a lot of nightmares yelling "no needles!" "I don't want to be here!" "don't do that to me! It hurts!". It literally breaks our hearts. Additionally, the movement in his sleep in painful at times, though it's getting better. He woke up crying for me six times last night. It's a wonder I actually got Liv to school on time this morning. Larry's out of town for work, or we would have shared the duty.
It took some time for Ari to get his balance and strength back, but now he's his normal, active self.
And now for the stupid injury portion of this blog...
My parents bought the Liv a trampoline, a promise they made to her years ago and had it delivered on Monday. It's HUGE and literally takes up our whole yard. She is beside herself with excitement. So much for all the English garden ideas on my Pinterest Board!
Those who know Larry and I well know that we are not, shall we say, the "handiest" of people. I quickly opened the boxes and convinced Larry to put it together with me. After attempt number one failed (a legitimate mistake), we put it together a second time and it was still not right. My dad came over on Tuesday morning to help while Larry was at work. Somehow, I managed to crush my right pinky between a falling metal bracket and the metal frame. My nail immediately turned dark purple and the throbbing pressure was unbearable. After watching a YouTube video on how to alleviate the pressure behind the nail, I heated up a safety pin, help my breath, and burnt a hole in it. Can you guess where this is going next? Yep... I successfully alleviated the pressure AND successfully inserted an infection directly into my nail bed. Brilliant. A tetanus shot, antibiotics, and a full round of labs later, the trampoline is still not put together.
That English garden is sounding better and better!
I'm amazed at how well Ari is healing, though I'd like to see him put on some weight. We're starting an appetite stimulant tonight and we'll see if that helps at all. Once he gains a few pounds, we'll schedule the spinal MRI (third time's a charm!) and an endoscopy to check out the esophageal healing. We also need to schedule the mitrofanoff surgery... more details on that to come.
For now, we are enjoying some family time, trying to catch up on sleep, and will eventually put together the #^!%* trampoline.
Ari's healing is nothing short of miraculous and I know a lot of it has to do with the support and prayers of all of his friends and family. Larry and I reflected on this often as he spent his time in the hospital looking at pictures friends drew him, watching movies they gave him and snuggling with new stuffed animals. We are overwhelmed by the generosity and love of our family, friends old and new, and Liv's cheer gym- the ATA family... THANK YOU!!
Thursday, February 16, 2012
Angels Among Us
I genuinely wanted to post an update sooner, but in addition to WiFi issues at the hospital, there was no time... An odd thing to say considering I haven't left Ari's room since his stretcher was wheeled in at 8 pm on Monday night, almost 7 hours after he went back for the surgery.
His time in the operating room was only 4 hours, the rest of that time was spent in the PACU. The surgery went exactly as planned with the addition of a central line, which is a surgically placed catheter that is passed through a vein to end up in the thoracic portion of the vena cava, or the right atrium of the heart.
As we prepared for the surgery, Ari was nervous, but happy to have both Larry and I with him. As his stretcher was pushed back to the OR, he held each of our hands until we reached the doors where we had to say good-bye. He was brave and didn't cry. Larry called after him, "Whatever you do, don't laugh and definitely do not smile!" It is a surefire way to get Ari to display the biggest of grins. The nurse looked up at us right at the doors were closing, telling us he just flashed a huge smile.
Larry and I walked back to the room in Day Surgery where we were to wait until the surgery was through. We sat, praying silently. I think that emotionally I was more prepared for this surgery than Larry because I was the one who took Ari to all of the diagnostic and pre-op appointments. A couple of weeks ago I was useless, crying at the thought of what my baby had to endure again. At this point, I was emotionally numb. It was an uncomfortable feeling. I wanted to cry, my heart ached, but I couldn't... I just felt empty.
Larry, on the other hand, had not allowed the reality of the situation to sink in until that point. I have often said that when one of us is weak, the other must be strong. That's part of our agreement from the start of this journey. I realized that I was not numb from lack of emotion, rather I was emotionally stable to help Larry rise up. Ahhh... the beauty of partnership.
I sat there, reliving the time when Ari went back into surgery in 2010 to "grow" his esophagus. I remember closing my eyes and envisioning angels gliding into his operating room. The angels in my mind were not the kind one would see on top of a christmas tree or in a picture. They looked like people- old, young, kind, gruff... an imagine that both shocked and comforted me at the same time. Call it Godly, call it an out of body experience, or just call me crazy, I can see it like it was yesterday.
I expected the same thing to happen this time, but it didn't. Instead, the only face I saw was that of Ari's surgeon's father, a well-loved pediatric surgeon himself who sadly passed right after Ari's 2010 operation. I took comfort in the belief that he was the angel that Ari, and his surgeon, needed for this procedure.
The discussion of angels may make some of you uncomfortable. Just a few years ago, I may have been skeptical myself. It was a series of experiences when Ari was in the NICU that made me more spiritual and open to the idea.
There were many points in time when, quite frankly, we worried whether Ari would survive his time in the NICU. On a particularly difficult day, I was sitting at his bedside when a woman from the cleaning staff slowly and methodically pushed a mop by his crib. She looked to be in her eighties and was missing most of her teeth. I had never seen her before. She stopped in front of Ari, then about two months old, who was staring at the ceiling and whispering baby babble. Slowly, she turned to me and said, "He's talking to his angels." Startled, I looked at her and she smiled. "Yup." she said, "That's exactly what he's doing." "You really think so?" I asked. "I know so." She said, and continued pushing her broom. In all of our time spent at the same hospital, I have never seen that woman again.
Later that evening while Larry spent time at the hospital with Ari, I was home having dinner with Liv, then 3 years old. It was hard to swallow past the knot in my throat. I was waiting for the call telling me come to the hospital, the call that meant his condition was critical. My heart was split between being at the hospital with Ari and home with Liv.
During a lull in our conversation, Liv told me, "Mommy, I have a secret." Caught off-guard, I asked her what it and who told it to her. We had a "no secrets from Mommy" rule in our house and I was curious to hear what she had to say. She motioned with her pointer finger for me to come closer, which I obliged. "God told me the secret." she whispered, "He told me to tell you not to worry, that Ari is going to be okay." Unable to hold in my emotion, I hid my face in my hands so she wouldn't see me cry. I believed her... I really did.
For Ari's first few years of life, he continued to talk to his angels, playing peek-a-boo and telling stories from his crib. When we'd ask him who he was talking to and he'd point, but we saw nothing. Eventually the question turned into "Are you talking to your angels?", which he always answered yes. We took comfort and knowing they were there to protect him.
When Ari got the floor on Monday, he was on oxygen, had a chest tube (which is still the primary source of pain for him), a urinary catheter, a central line, an IV, a pain medicine catheter placed in his ribs and the large incision. To do this surgery, his surgeon had to cut around his left side and separate the ribs in order to work on the esophagus. When his eyes fluttered open, he wretched and whispered, "food's not stuck.", as if to reassure us. A little while later he woke again, hoarsely said "ouch" and again went back to sleep. After the anesthesia wore off, his pain increased. He didn't complain and didn't cry. All he wanted was to hold my hand and know I was there, something I was more than willing to do.
Post-op day one was tough, though removing the catheter and IV helped a bit. The only word he spoke was "ouch" and then he added "medicine" when pain meds were needed. Day 2 was even tougher and we upped his pain meds and added Ativan. He seemed to turn a corner today, chatting, playing with the toys in bed and talking about Dr. Bleacher fixing his "sock-a-sa-gus". He spiked a fever tonight and has been waking up in pain. It's just the cycle of recovery.
Though in a lot of pain yesterday, it is only fitting that my Little Lion got his roar back while proving to Dr. Bleacher that he's so strong. For those of you who are new to Ari's story, you may not be familiar with our team of doctors. Dr. Bleacher has been our ring-leader for this entire journey and will always have a place in my heart as one of my personal heroes. Ari thrives today because of Dr. Bleacher's ability and willingness to go the extra step. More of that to come in another post.
We were also thrilled to see Ari's GI, Dr. Blumenthal (Dr. B) today. Thursdays are his surgical day (which we know all too well) and hew snuck away for a few minutes to check on Ari. As Ari was receiving his breathing treatment, he held Dr. B's hand and told him all about the foods he wants to eat once he heals.
He has an esophagram scheduled for tomorrow, which will show us if there are any esophageal leaks. He has not moved from his bed, laying on his back the entire time. I cannot imagine how difficult it will be to get him on the fluoroscopy table for the study. If all goes well, he'll move onto clear liquids. If that works, the chest tube will be removed and we'll try some other liquids, eventually moving to purees.
He's been watching Hi-5 DVDs over and over since we arrived... Ari's personal favorite and a hospital tradition for him. Prior to this surgery I asked Ari if he could do one thing, what would it be? His answer was to see Hi-5 in concert. Being that they haven't been together in 9 years, I knew this couldn't happen. Instead, I decided to try to locate his favorite Hi-5 actor- Shaun Taylor-Corbett. I reached out to him via Facebook and told him a little about Ari and his wish, asking him if he'd mind sending Ari a quick message. What Shaun did for us is such a demonstration of personal character... Please check out the link to see Shaun's private concert and inspiring words for Ari via YouTube.
When Ari watched the video, Larry, Liv and I were all overcome with emotion. Ari answered every question as if they were really conversing. When Shaun told him to sing along, he sang with such pride. I still tear up thinking about it. For days following receipt of the video, Ari would run to me and say "Shaun from Hi-5 knows my name and he said I'm big and strong!!"
The lessons we can learn from Ari's strength and outlook plentiful. I'll leave you with a conversation we had today.
I asked Ari if he could have 3 wishes, what would they be? His looked at the TV and said "more Hi-5", looked at the bed and saw that a sock came off and said "new socks" and thought real hard about the third thing before answering "learn how to write my name- Ari Grant Shumbres".
Encouraging additional dialogue I asked him what he wants to be when he grows up.
His reply was "Just Ari."
Could a more perfect answer exist?
Ari's personal Hi-5 concert
His time in the operating room was only 4 hours, the rest of that time was spent in the PACU. The surgery went exactly as planned with the addition of a central line, which is a surgically placed catheter that is passed through a vein to end up in the thoracic portion of the vena cava, or the right atrium of the heart.
As we prepared for the surgery, Ari was nervous, but happy to have both Larry and I with him. As his stretcher was pushed back to the OR, he held each of our hands until we reached the doors where we had to say good-bye. He was brave and didn't cry. Larry called after him, "Whatever you do, don't laugh and definitely do not smile!" It is a surefire way to get Ari to display the biggest of grins. The nurse looked up at us right at the doors were closing, telling us he just flashed a huge smile.
Larry and I walked back to the room in Day Surgery where we were to wait until the surgery was through. We sat, praying silently. I think that emotionally I was more prepared for this surgery than Larry because I was the one who took Ari to all of the diagnostic and pre-op appointments. A couple of weeks ago I was useless, crying at the thought of what my baby had to endure again. At this point, I was emotionally numb. It was an uncomfortable feeling. I wanted to cry, my heart ached, but I couldn't... I just felt empty.
Larry, on the other hand, had not allowed the reality of the situation to sink in until that point. I have often said that when one of us is weak, the other must be strong. That's part of our agreement from the start of this journey. I realized that I was not numb from lack of emotion, rather I was emotionally stable to help Larry rise up. Ahhh... the beauty of partnership.
I sat there, reliving the time when Ari went back into surgery in 2010 to "grow" his esophagus. I remember closing my eyes and envisioning angels gliding into his operating room. The angels in my mind were not the kind one would see on top of a christmas tree or in a picture. They looked like people- old, young, kind, gruff... an imagine that both shocked and comforted me at the same time. Call it Godly, call it an out of body experience, or just call me crazy, I can see it like it was yesterday.
I expected the same thing to happen this time, but it didn't. Instead, the only face I saw was that of Ari's surgeon's father, a well-loved pediatric surgeon himself who sadly passed right after Ari's 2010 operation. I took comfort in the belief that he was the angel that Ari, and his surgeon, needed for this procedure.
The discussion of angels may make some of you uncomfortable. Just a few years ago, I may have been skeptical myself. It was a series of experiences when Ari was in the NICU that made me more spiritual and open to the idea.
There were many points in time when, quite frankly, we worried whether Ari would survive his time in the NICU. On a particularly difficult day, I was sitting at his bedside when a woman from the cleaning staff slowly and methodically pushed a mop by his crib. She looked to be in her eighties and was missing most of her teeth. I had never seen her before. She stopped in front of Ari, then about two months old, who was staring at the ceiling and whispering baby babble. Slowly, she turned to me and said, "He's talking to his angels." Startled, I looked at her and she smiled. "Yup." she said, "That's exactly what he's doing." "You really think so?" I asked. "I know so." She said, and continued pushing her broom. In all of our time spent at the same hospital, I have never seen that woman again.
Later that evening while Larry spent time at the hospital with Ari, I was home having dinner with Liv, then 3 years old. It was hard to swallow past the knot in my throat. I was waiting for the call telling me come to the hospital, the call that meant his condition was critical. My heart was split between being at the hospital with Ari and home with Liv.
During a lull in our conversation, Liv told me, "Mommy, I have a secret." Caught off-guard, I asked her what it and who told it to her. We had a "no secrets from Mommy" rule in our house and I was curious to hear what she had to say. She motioned with her pointer finger for me to come closer, which I obliged. "God told me the secret." she whispered, "He told me to tell you not to worry, that Ari is going to be okay." Unable to hold in my emotion, I hid my face in my hands so she wouldn't see me cry. I believed her... I really did.
For Ari's first few years of life, he continued to talk to his angels, playing peek-a-boo and telling stories from his crib. When we'd ask him who he was talking to and he'd point, but we saw nothing. Eventually the question turned into "Are you talking to your angels?", which he always answered yes. We took comfort and knowing they were there to protect him.
When Ari got the floor on Monday, he was on oxygen, had a chest tube (which is still the primary source of pain for him), a urinary catheter, a central line, an IV, a pain medicine catheter placed in his ribs and the large incision. To do this surgery, his surgeon had to cut around his left side and separate the ribs in order to work on the esophagus. When his eyes fluttered open, he wretched and whispered, "food's not stuck.", as if to reassure us. A little while later he woke again, hoarsely said "ouch" and again went back to sleep. After the anesthesia wore off, his pain increased. He didn't complain and didn't cry. All he wanted was to hold my hand and know I was there, something I was more than willing to do.
Post-op day one was tough, though removing the catheter and IV helped a bit. The only word he spoke was "ouch" and then he added "medicine" when pain meds were needed. Day 2 was even tougher and we upped his pain meds and added Ativan. He seemed to turn a corner today, chatting, playing with the toys in bed and talking about Dr. Bleacher fixing his "sock-a-sa-gus". He spiked a fever tonight and has been waking up in pain. It's just the cycle of recovery.
Though in a lot of pain yesterday, it is only fitting that my Little Lion got his roar back while proving to Dr. Bleacher that he's so strong. For those of you who are new to Ari's story, you may not be familiar with our team of doctors. Dr. Bleacher has been our ring-leader for this entire journey and will always have a place in my heart as one of my personal heroes. Ari thrives today because of Dr. Bleacher's ability and willingness to go the extra step. More of that to come in another post.
We were also thrilled to see Ari's GI, Dr. Blumenthal (Dr. B) today. Thursdays are his surgical day (which we know all too well) and hew snuck away for a few minutes to check on Ari. As Ari was receiving his breathing treatment, he held Dr. B's hand and told him all about the foods he wants to eat once he heals.
He has an esophagram scheduled for tomorrow, which will show us if there are any esophageal leaks. He has not moved from his bed, laying on his back the entire time. I cannot imagine how difficult it will be to get him on the fluoroscopy table for the study. If all goes well, he'll move onto clear liquids. If that works, the chest tube will be removed and we'll try some other liquids, eventually moving to purees.
He's been watching Hi-5 DVDs over and over since we arrived... Ari's personal favorite and a hospital tradition for him. Prior to this surgery I asked Ari if he could do one thing, what would it be? His answer was to see Hi-5 in concert. Being that they haven't been together in 9 years, I knew this couldn't happen. Instead, I decided to try to locate his favorite Hi-5 actor- Shaun Taylor-Corbett. I reached out to him via Facebook and told him a little about Ari and his wish, asking him if he'd mind sending Ari a quick message. What Shaun did for us is such a demonstration of personal character... Please check out the link to see Shaun's private concert and inspiring words for Ari via YouTube.
When Ari watched the video, Larry, Liv and I were all overcome with emotion. Ari answered every question as if they were really conversing. When Shaun told him to sing along, he sang with such pride. I still tear up thinking about it. For days following receipt of the video, Ari would run to me and say "Shaun from Hi-5 knows my name and he said I'm big and strong!!"
The lessons we can learn from Ari's strength and outlook plentiful. I'll leave you with a conversation we had today.
I asked Ari if he could have 3 wishes, what would they be? His looked at the TV and said "more Hi-5", looked at the bed and saw that a sock came off and said "new socks" and thought real hard about the third thing before answering "learn how to write my name- Ari Grant Shumbres".
Encouraging additional dialogue I asked him what he wants to be when he grows up.
His reply was "Just Ari."
Could a more perfect answer exist?
Ari's personal Hi-5 concert
Tuesday, February 7, 2012
Decisions, Decisions
In the time that lapsed since my last post, our life has changed. For one thing, we've recovered from the fear of the unknown and transitioned into survival mode. I have spent countless hours coordinating with nurses, schedulers, surgeons, specialists, work, school, etc... Ari had his cecostomy button changed in the endoscopy clinic, my dad had a hip replacement, and I transitioned to part-time employment in anticipation of the challenges ahead.
It's exhausting to even think about it.
Larry and I are often asked "How do you do it?" The answer is simple and with over 80% of all couples with a special needs child ending in divorce, it is also necessary.
Partnership.
This isn't a corny, marriage advise sort of answer. It's reality. Before we had to make decisions that affect so many lives, our marriage was fun, connected... easy. Once we switch into this survival mode, we become business partners, scheduling and delegating to maximize our time like the most efficiently run organization. We go days without seeing each other and the time we do get is spent reviewing what has happened, what needs to happen, and establishing a contingency plan.
We had just settled into our life- a new house, Ari in pre-k 2 days a week, Liv happy in school and loving cheer. Larry and I finally had a chance to exhale and actually look at each other, taking in the enormity of the last 4 years. "We made it." We would say with genuine smiles, settling into the comfort that comes with routine. Seventeen years passed by in a flash, yet I have few memories of the time before we met. When deep in love and planning a future together, no one says "We're going to make a child that has birth defects and requires us to test our resilience and love until we are worn to a breaking point...THEN we'll briefly recover and do it all again." No... it's not a common conversation for young couples.
We scheduled the surgery for Ari to have a G-tube inserted again last Friday. He wasn't eating much and we were concerned about his weight and energy. He didn't look well and we wanted him to get the nutrition and strength he'll need for a major surgery.
Things changed when I received a surprise present from my closest Tri-Delt pledge sisters- a VitaMix blender/juicer. The first day, I used it 7 times, amazed that I could make Ari high-calorie beverages and purees that included all of the fruits and vegetables he was never able to swallow. Almost instantly, he perked up, asking for smoothies and drinking them with vigor. I am so grateful to Julie, Julie, Stef, and Katie for this present. Because of their generosity and Ari's willing to try new foods, we were able to cancel the G-tube surgery and pushed up the inevitable esophageal repair to February 13th. This means canceling his spinal MRI again (which was supposed to be tomorrow), but we'll work it back in when we can.
THE PLAN
Ari will be cut along the same incision site as his miraculous esophageal "growth" surgery in 2010- front to back around the left side. The ribs will be pulled apart to access the esophagus and his surgeon, Dr. Bleacher will make a vertical incision, then a horizontal closure, below the esophageal "shelf". If all goes well, there will be no need for a complete revision, though that is still an option. His hospital stay will be around a week. His recovery at home will be much longer.
Larry and I will both be at the hospital on Monday. Post-op, I will spend the week there. Larry will come every night after work. We will switch on Friday, with Larry taking the hospital shift and me spending the weekend with Liv at Cheer Sport in Atlanta.
During the week, Liv will stay with my parents (thank God they moved here!!) Monday through Friday with the exception of a special Valentine's Day dinner date with her daddy. I'm going to miss her so much.
I received a call yesterday from the anestethia department needing to see Ari for a blood match. I completely forgot that he has to have blood transfusions for his last two esophageal surgeries. The very though makes me sick. I'm frantically working with the Red Cross and Dr. Bleacher's office to see if I can donate my blood to him for a direct donation. It's hard to coordinate because I have to give at a blood bank and they have to screen, label, and special deliver it in time for the surgery. If we can't make it happen this morning it will be too late. I'm praying we can coordinate this in time.
As I walked by Ari's room late last night, I was taken aback by the knot that formed in my stomach. Walking into his room, I watched him sleep... so peaceful and sweet. I leaned over, breathing in his breath as he exhaled, making him a part of me once again. I prayed to God and to His Angels.
Be strong, Little Lion... be strong.
If you ever need a reminder of the true zest for life within Ari- click the link below. I don't know what's funnier- Ari tap dancing in Topsiders or my mom's friend Mickey singing.
Ari "tap dancing"- Pure joy!!
It's exhausting to even think about it.
Larry and I are often asked "How do you do it?" The answer is simple and with over 80% of all couples with a special needs child ending in divorce, it is also necessary.
Partnership.
This isn't a corny, marriage advise sort of answer. It's reality. Before we had to make decisions that affect so many lives, our marriage was fun, connected... easy. Once we switch into this survival mode, we become business partners, scheduling and delegating to maximize our time like the most efficiently run organization. We go days without seeing each other and the time we do get is spent reviewing what has happened, what needs to happen, and establishing a contingency plan.
We had just settled into our life- a new house, Ari in pre-k 2 days a week, Liv happy in school and loving cheer. Larry and I finally had a chance to exhale and actually look at each other, taking in the enormity of the last 4 years. "We made it." We would say with genuine smiles, settling into the comfort that comes with routine. Seventeen years passed by in a flash, yet I have few memories of the time before we met. When deep in love and planning a future together, no one says "We're going to make a child that has birth defects and requires us to test our resilience and love until we are worn to a breaking point...THEN we'll briefly recover and do it all again." No... it's not a common conversation for young couples.
We scheduled the surgery for Ari to have a G-tube inserted again last Friday. He wasn't eating much and we were concerned about his weight and energy. He didn't look well and we wanted him to get the nutrition and strength he'll need for a major surgery.
Things changed when I received a surprise present from my closest Tri-Delt pledge sisters- a VitaMix blender/juicer. The first day, I used it 7 times, amazed that I could make Ari high-calorie beverages and purees that included all of the fruits and vegetables he was never able to swallow. Almost instantly, he perked up, asking for smoothies and drinking them with vigor. I am so grateful to Julie, Julie, Stef, and Katie for this present. Because of their generosity and Ari's willing to try new foods, we were able to cancel the G-tube surgery and pushed up the inevitable esophageal repair to February 13th. This means canceling his spinal MRI again (which was supposed to be tomorrow), but we'll work it back in when we can.
THE PLAN
Ari will be cut along the same incision site as his miraculous esophageal "growth" surgery in 2010- front to back around the left side. The ribs will be pulled apart to access the esophagus and his surgeon, Dr. Bleacher will make a vertical incision, then a horizontal closure, below the esophageal "shelf". If all goes well, there will be no need for a complete revision, though that is still an option. His hospital stay will be around a week. His recovery at home will be much longer.
Larry and I will both be at the hospital on Monday. Post-op, I will spend the week there. Larry will come every night after work. We will switch on Friday, with Larry taking the hospital shift and me spending the weekend with Liv at Cheer Sport in Atlanta.
During the week, Liv will stay with my parents (thank God they moved here!!) Monday through Friday with the exception of a special Valentine's Day dinner date with her daddy. I'm going to miss her so much.
I received a call yesterday from the anestethia department needing to see Ari for a blood match. I completely forgot that he has to have blood transfusions for his last two esophageal surgeries. The very though makes me sick. I'm frantically working with the Red Cross and Dr. Bleacher's office to see if I can donate my blood to him for a direct donation. It's hard to coordinate because I have to give at a blood bank and they have to screen, label, and special deliver it in time for the surgery. If we can't make it happen this morning it will be too late. I'm praying we can coordinate this in time.
As I walked by Ari's room late last night, I was taken aback by the knot that formed in my stomach. Walking into his room, I watched him sleep... so peaceful and sweet. I leaned over, breathing in his breath as he exhaled, making him a part of me once again. I prayed to God and to His Angels.
Be strong, Little Lion... be strong.
If you ever need a reminder of the true zest for life within Ari- click the link below. I don't know what's funnier- Ari tap dancing in Topsiders or my mom's friend Mickey singing.
Ari "tap dancing"- Pure joy!!
Thursday, January 26, 2012
4th Birthday and New Challenges
Yesterday was a very special day in our lives... Ari turned 4. I vividly remember the two weeks on the high-risk perinatal floor, the hours of labor... and then then panic.
Ari's heart rate rapidly dropped in utero. Larry noticed... 170, 120, 80, 50... As he ran to get the nurse, she was already on her way in with a team of nurses behind her. Ari's umbilical cord had prolapsed, or pinched, from the extra fluid and was cutting off his oxygen. The results of this can be fatal and quick. The nurses were running. One, Two, Three- they rocked me back and forth by the blanket beneath me and lifted me onto a stretcher as the IV ripped out of my arm. As we passed the doctor, she was yelling "I said STAT!!!" holding up her hands for the nurses to glove her.
As the nurses ran out of the room with the stretcher, my bed slammed into the nurses station like a scene from a movie. In seconds, I was in the OR and masked. The medicine made me lose my vision. I counted 20 shadows in the room, the most important one by my head. Larry managed to gown up quick enough to make it in time for Ari's birth.
The baby was out, but he wasn't crying. "Save my baby! I don't hear him!" I cried over and over again. There were so many people in the small OR, their voices merged together in a loud buzz. Larry insisted he heard a cry, but I didn't hear him. Finally, I heard his meek cry and I joined him, overwrought with emotion and so grateful for his life. Another shadow approached me- it was a nurse from the NICU team. She got close to my face and said loudly, "He has imperforate anus. DO you know what that means?"
"Yes," I answered, "I do."
Ari was brought to me for less than a second, then whisked away to the NICU.
We are amazed at what he has endured over the past 4 years. Through it all, he smiles and has the best attitude. I am proud to say that this weekend, Ari is having his first real birthday party... the kind where you invite the whole class, go to a place that specializes in kid parties and eat cupcakes. It's a big moment in normalcy for us.
BUT...
I would be dishonest to you, my readers, if I keep one very big, very new part of Ari's journey a secret. I can't get my arms around it... can't form the words to describe the heartache and dread this musters within us.
I brought Ari to see his GI yesterday, on his birthday. Ari loves this doctor and it is always a treat for them to see each other, they've grown close over the past 4 years. I had no idea that we'd be there for an hour and a half, no idea that we would once again be making life changing decisions in this office.
The "egg shaped" area I described in my last post was a bit of an understatement. The truth is, this stretched out area is about the size of his stomach. His peristalsis is not working at all in this area. Food is storing in it, randomly moving down to block the esophagus when it becomes loose, causing choking, regurgitating and the worst case scenario, aspiration.
He is now a severe aspiration risk and has been taken off solid foods. His diet is purees only and he doesn't understand at all, though he does know he's been choking more. He's angry, acting out, and sad. He's starting to "get it" and knows this isn't good. We are going to have to insert a G-tube again. This was our measure of success! Oh, the steps back we're taking.
He has started choking in his sleep, so he's now sleeping with us. We can keep an eye on him and re-adjust his position as needed, getting up often to make sure he's ok.
Please hear me loud an clear when I tell you there is no medical solution for this. I don't want my baby cut open front to back, all the way around his side- he's already had this done on both sides. I don't want to have to cut another section out of his esophagus out when he worked so hard to get to this point. And what for?!? So the same thing can happen again? There is no solution and I'm scared. I'm scared that he looks like he's getting worn out, that he'll give up. I am so scared that I can barely swallow past the knot in my throat. I feel paralyzed... unable to think about anything else.
As Larry and I try to go about our daily lives, the sadness in the air is noticeable. I see it in our faces and our posture. Someone asked me today what's next and I'm having trouble seeing past tomorrow, when we go to the endoscopy clinic to change out the faulty cecostomy button. Can you believe that he is going to have a button to assist with stooling, one for catching urine, and one for feeding? We will control his 3 primary bodily functions. That's a lot of responsibility for any of his caregivers.
I will get a grasp on this situation. We'll develop a plan and it will be our new normal. In the meantime, my wall is down, exposing the fragility that I try to hide with self-confidence and a smile. I have to get over this, and quick. I cannot expect Ari to be strong if I do not show strength myself. I cannot expect him to smile and be brave if I am showing sadness and fear.
Please pray for my Little Lion to gather his strength and be brave, and for us to lead by example, rising above the fear and doubt and focusing on the positive and finding the right course of treatment.
Ari's heart rate rapidly dropped in utero. Larry noticed... 170, 120, 80, 50... As he ran to get the nurse, she was already on her way in with a team of nurses behind her. Ari's umbilical cord had prolapsed, or pinched, from the extra fluid and was cutting off his oxygen. The results of this can be fatal and quick. The nurses were running. One, Two, Three- they rocked me back and forth by the blanket beneath me and lifted me onto a stretcher as the IV ripped out of my arm. As we passed the doctor, she was yelling "I said STAT!!!" holding up her hands for the nurses to glove her.
As the nurses ran out of the room with the stretcher, my bed slammed into the nurses station like a scene from a movie. In seconds, I was in the OR and masked. The medicine made me lose my vision. I counted 20 shadows in the room, the most important one by my head. Larry managed to gown up quick enough to make it in time for Ari's birth.
The baby was out, but he wasn't crying. "Save my baby! I don't hear him!" I cried over and over again. There were so many people in the small OR, their voices merged together in a loud buzz. Larry insisted he heard a cry, but I didn't hear him. Finally, I heard his meek cry and I joined him, overwrought with emotion and so grateful for his life. Another shadow approached me- it was a nurse from the NICU team. She got close to my face and said loudly, "He has imperforate anus. DO you know what that means?"
"Yes," I answered, "I do."
Ari was brought to me for less than a second, then whisked away to the NICU.
We are amazed at what he has endured over the past 4 years. Through it all, he smiles and has the best attitude. I am proud to say that this weekend, Ari is having his first real birthday party... the kind where you invite the whole class, go to a place that specializes in kid parties and eat cupcakes. It's a big moment in normalcy for us.
BUT...
I would be dishonest to you, my readers, if I keep one very big, very new part of Ari's journey a secret. I can't get my arms around it... can't form the words to describe the heartache and dread this musters within us.
I brought Ari to see his GI yesterday, on his birthday. Ari loves this doctor and it is always a treat for them to see each other, they've grown close over the past 4 years. I had no idea that we'd be there for an hour and a half, no idea that we would once again be making life changing decisions in this office.
The "egg shaped" area I described in my last post was a bit of an understatement. The truth is, this stretched out area is about the size of his stomach. His peristalsis is not working at all in this area. Food is storing in it, randomly moving down to block the esophagus when it becomes loose, causing choking, regurgitating and the worst case scenario, aspiration.
He is now a severe aspiration risk and has been taken off solid foods. His diet is purees only and he doesn't understand at all, though he does know he's been choking more. He's angry, acting out, and sad. He's starting to "get it" and knows this isn't good. We are going to have to insert a G-tube again. This was our measure of success! Oh, the steps back we're taking.
He has started choking in his sleep, so he's now sleeping with us. We can keep an eye on him and re-adjust his position as needed, getting up often to make sure he's ok.
Please hear me loud an clear when I tell you there is no medical solution for this. I don't want my baby cut open front to back, all the way around his side- he's already had this done on both sides. I don't want to have to cut another section out of his esophagus out when he worked so hard to get to this point. And what for?!? So the same thing can happen again? There is no solution and I'm scared. I'm scared that he looks like he's getting worn out, that he'll give up. I am so scared that I can barely swallow past the knot in my throat. I feel paralyzed... unable to think about anything else.
As Larry and I try to go about our daily lives, the sadness in the air is noticeable. I see it in our faces and our posture. Someone asked me today what's next and I'm having trouble seeing past tomorrow, when we go to the endoscopy clinic to change out the faulty cecostomy button. Can you believe that he is going to have a button to assist with stooling, one for catching urine, and one for feeding? We will control his 3 primary bodily functions. That's a lot of responsibility for any of his caregivers.
I will get a grasp on this situation. We'll develop a plan and it will be our new normal. In the meantime, my wall is down, exposing the fragility that I try to hide with self-confidence and a smile. I have to get over this, and quick. I cannot expect Ari to be strong if I do not show strength myself. I cannot expect him to smile and be brave if I am showing sadness and fear.
Please pray for my Little Lion to gather his strength and be brave, and for us to lead by example, rising above the fear and doubt and focusing on the positive and finding the right course of treatment.
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