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!!
Inspiration . Courage . Roar. The story of Ari Shumbres and our life surrounding his 100+ intubated surgeries and procedures.
Thursday, February 23, 2012
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!!
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