In the summer of 2015, Josiah's hearing continued to come into question. Though no serious hearing loss was found, the recommendation for hearing aides were present. As I tend to do nothing without full disclosure of information and examination, Carl and I asked that structural abnormalities be ruled out. If Josiah's hearing loss was a result of an easily fixable abnormality, we wanted to examine that road first. So, with no questions asked, a CT (cat scan) was ordered to examine the structural interior of Josiah's ears. The result: no structural abnormalities found supporting a surgical option. Instead, the CT scan made note of an unusual density to his cerebellum. Further imaging, via MRI, was recommended.
Carl and I spent many an hour researching "unusual density to cerebellum". The results left us no more certain about the meaning of these unusual findings. "It could be something." "It could be nothing." "It could be related to the Down syndrome." That's a clear as picture as we could form. As Fall proceeded, Josiah was fitted for hearing aides. We continued to wonder about the mystery now facing our son. Carl passed. Time passed. In early December, I found myself driving Josiah to a local Children's Hospital for a scheduled MRI. Josiah was sedated for the procedure, they obtained the necessary images, Josiah endured without complaint or complication. I continued with life, still wondering what the findings might show.
In mid-December, I received the results of the MRI. Although Josiah's brain looks different than an average brain, it looks "typical" for a child with Down syndrome. Josiah has more white matter than those without DS, but typical of a person with DS. I theorized that this might explain why people with Down syndrome are more likely to develop dementia in their 30's or 40's. The MRI showed that Josiah had fluid in his right ear (which was infected). There were the previously noted abnormalities within the structure of his ear but masses and tumors were ruled out. There was, surprisingly, evidence of an old brain bleed - as evidenced by staining on the brain. They stressed that it was old. It could've happened during child birth or as a result of very early pulmonary hypertension. Regardless, they voiced that it was not a current concern. No lesions, tumors, masses, or fluid on the brain were found. I called the neurology department and scheduled an appt for early January to discuss the findings and, more importantly, learn how these findings could impact Josiah.
The January appointment was cancelled by Children's. They had talked to Josiah's pediatrician and were determining the best follow up plan. I had the information (above) but still no clear cut answers as to what it all meant. It took well over 2 months, but a follow up was finally scheduled for March.
In the wee hours, on a March morning, Josiah & I headed to the Children's Satellite location where we met with a neurologist and hematologist from the stroke clinic. Yes, stroke clinic! I finally received the clear-cut answers I was seeking.
Josiah had numerous strokes, as evidenced by gray matter in two lobes of his brain - the parietal lobe & the cerebellum. The parietal lobe controls the "gps of the mind" - spacial awareness, ability to see peripherally, etc. The cerebellum controls balance. There were numerous areas of gray matter, consistent with numerous 'remote' strokes. They are all old. Although they, technically, damaged parts of Josiah's brain, they caused no ill effects. Their best guess is that these remote strokes happened around the time of Josiah's open heart surgery - likely when he was on the bypass machine.
So, it is believed that Josiah had two kinds of strokes: ischemic arterial stroke & a venous stroke. Due to the areas of the brain that were damaged, they did little to cause problems for Josiah. Through historical documentation, as well as tests they performed, they do not believe Josiah's balance or 'gps' system have been negatively impaired. Josiah's strokes are considered "silent strokes" as they happen, unbeknownst to anyone, and cause no impairment. In a child who has had an ischemic arterial stroke (the one that generally impairs the gps system), a young child's brain will often re-map itself so the damaged area is of no consequence. This is what they believed happened with Josiah.
The extra white matter, in Josiah's brain? Not related to Down syndrome. Rather, it is damage to the cells as a result of the earlier strokes. The believe these strokes were a one-time incident. They do not believe he is at risk for any further strokes.
They will perform another MRI at the end of 2016 to make sure there are no additional changes. If the 2 images look the same, no further follow up will be required.
Though stunned to learn Josiah had suffered from numerous strokes, I am thankful that these findings were discovered by accident. It was not symptoms that drove us searching for answers, it was a Mom & Dad who simply wanted to rule out a structural abnormality within their son's ears.
I remain in awe of this beautiful soul. Blessed with an extra chromosome, he courageously fought RSV, open heart surgery, and numerous remote strokes. His brain? It just remapped itself; No problem.
As I continue to climb up the down staircase, I remain in complete admiration. I continue to smile at a life so precious. I continue to point to the stars because nothing's going to stop Josiah from reaching his full potential :)
Showing posts with label open heart surgery. Show all posts
Showing posts with label open heart surgery. Show all posts
Saturday, August 20, 2016
Saturday, May 4, 2013
Cardiology Follow Up
Josiah had open heart surgery on January 25th, 2012. He was 3 months old.
The brilliant surgeon closed 7 small holes (vsd's) & 1 very large hole (asd) in his heart. He was suffering from pulmonary hypertension (half of Josiah's heart was much larger than the other half - caused from Josiah's heart beating "twice as hard" to keep the pressure 'normal') that could prove fatal if not addressed. After surgery we were assured that the holes were closed, Josiah would recover, and the hypertension would likely resolve.
Josiah had a follow up with the cardiologist approximately 12 weeks after surgery. The MD said "You would never know this child had had congenital heart disease." It was suggested that we follow up at one year.
Well, we missed on the one year mark. We did, however, prepare early Friday morning and headed for the long-overdue follow up with the cardiologist. We arrived at 9:15, five minutes early.
Josiah received his normal EKG, without regard or incident. He was weighed and measured. The MD came in and immediately remarked as to how much Josiah has grown (I assumed, and hoped, that was a good thing). Dr. P listened to Josiah's heart and asked if we thought he would tolerate a few pics (ie, an echo-cardiogram). I said, "Sure."
As I dressed Josiah to wait for the technician to be available, I asked "are you worried about something?" To my delight he replied, "No. We haven't gotten pictures since right after the surgery. This is just routine." We went to the waiting room. This Mama held onto her usual level of optimism (and hope that news would not be unexpected).
After what seemed like a long wait, we were finally called into the tech room. I layed on the bed with Josiah trying to keep him distracted from the leads and jelly that covered his chest. Amazingly, we were done about 20 minutes later. We headed into the room to await the MD's return.
After a relatively short wait, the Dr. P returned. Smiling, he announced "Josiah's heart looks perfect. I don't need to see him for another couple of years." Ahhh!!! Music to this Mama's soul <3.
As promised, the holes are closed; Josiah has recovered; The pulmonary hypertension is resolved. My miracle boy has a perfect heart.
Thank you, God!
The brilliant surgeon closed 7 small holes (vsd's) & 1 very large hole (asd) in his heart. He was suffering from pulmonary hypertension (half of Josiah's heart was much larger than the other half - caused from Josiah's heart beating "twice as hard" to keep the pressure 'normal') that could prove fatal if not addressed. After surgery we were assured that the holes were closed, Josiah would recover, and the hypertension would likely resolve.
Josiah had a follow up with the cardiologist approximately 12 weeks after surgery. The MD said "You would never know this child had had congenital heart disease." It was suggested that we follow up at one year.
Well, we missed on the one year mark. We did, however, prepare early Friday morning and headed for the long-overdue follow up with the cardiologist. We arrived at 9:15, five minutes early.
Josiah received his normal EKG, without regard or incident. He was weighed and measured. The MD came in and immediately remarked as to how much Josiah has grown (I assumed, and hoped, that was a good thing). Dr. P listened to Josiah's heart and asked if we thought he would tolerate a few pics (ie, an echo-cardiogram). I said, "Sure."
As I dressed Josiah to wait for the technician to be available, I asked "are you worried about something?" To my delight he replied, "No. We haven't gotten pictures since right after the surgery. This is just routine." We went to the waiting room. This Mama held onto her usual level of optimism (and hope that news would not be unexpected).
After what seemed like a long wait, we were finally called into the tech room. I layed on the bed with Josiah trying to keep him distracted from the leads and jelly that covered his chest. Amazingly, we were done about 20 minutes later. We headed into the room to await the MD's return.
After a relatively short wait, the Dr. P returned. Smiling, he announced "Josiah's heart looks perfect. I don't need to see him for another couple of years." Ahhh!!! Music to this Mama's soul <3.
As promised, the holes are closed; Josiah has recovered; The pulmonary hypertension is resolved. My miracle boy has a perfect heart.
Thank you, God!
Friday, January 25, 2013
An Important Anniversary
One year ago, today, was a very important day. January 25, 2012. Josiah's rebirth...the day his broken heart was fixed.
Here is the much anticipated scar that I so feared. I remember hoping that as he grew, others wouldn't make fun of him for this scar.
Last year, we had learned of the many holes that were wreaking havoc in Josiah's heart. We learned about his pulmonary hypertension (caused by the holes). Josiah had undergone several tests and open heart surgery was necessary. We had received the call on Friday, Jan 20th...pre-op Tuesday, open heart surgery on Wednesday. Tuesday's pre-op happened without incident. Wednesday, January 25th, was a long day.
It started at 1:30am - we woke Josiah for his pre-surgery bath. As I undressed him, I knew that his chest would never look the same again. I remember feeling "he will be scarred for life." It's not a good feeling for a Mom to have. I took this picture of my little man. He weighed 8lbs 7oz. He was a mere 3.5 months old.
It was the most anal bath, I had ever dealt with. We had been sent home with a bath sponge, soap, and directions. It was important that we followed instructions as it would decrease the chance of infection. We followed directions to a tee.
At 2:00am, I was nursing him - we had a 3:00am cut-off time. I wanted to be sure he had one last feeding before we left for the hospital. Josiah ate and napped.
At 5:00am, we left for Children's, arriving at 6:15. We were checked in by 6:45 and taken to pre-op. At 7:50, Nurse Tom would do something very special. He allowed us our hugs/kisses, wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, then CARRIED our little angel to the operating room.
At noon, we were meeting with the surgeon. Josiah had successfully undergone open-heart surgery. He was a little miracle.
Josiah was in CICU immediately following the surgery. There were tubes, machines, and the like. Here are the pics I took of him there:
It's difficult to convey 'what I felt' then. By reading my own blog, the memories come right back. I remember things that had since been forgotten...the details...the little moments. The play-back of time.
Suffice it to say, Josiah did amazingly well. Here is a picture of him taken two days after surgery. It was January 27th. Most of the tubes had been removed. He was out of the CICU. Recovery was amazing!!!
On January 29th, I wrote the following in my blog:
"Josiah woke at 1am for a weight check and feeding. He's weighing in at 3.14k (down from 3.15 the night before). Then he slept until 7am. We woke to confirmation of today's planned discharge. Carl is coming at 3pm to take us home.
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate."
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate."
This is a picture I took last night January 24th, 2013. It is the one year later pic :). It's hard to tell he even had surgery. It is amazing!
And, this is Josiah - one year later. Happy Anniversary, my little heart hero :)
Current age: 15months
Current weight: 20lbs 12oz
Current height: 30.5 inches
Cute factor: 10
...forever grateful for the miracles in my life...
Saturday, October 13, 2012
31 for 21 Blog Challenge: DAY TWELVE: 1st Birthday
It's official! Josiah is ONE!!!!!
It's hard to believe what a difference a year can make.
Last year, at this time, I think I was running on pure adrenaline (and strength from above). My oldest brother had just died (in September) and we had put him to rest. Carl had had a medical emergency and was hospitalized for about two weeks. One week later, Josiah was born.
The following several months were typical of a family embracing a new baby. We were no different, just running on exhaustion having survived the chaos of the previous weeks.
In December, the older boys got colds. Josiah got one - it proved to be the best thing that could have happened. The 'cold' developed into bronchiolitis (and possible RSV). He was hospitalized at Children's for one night. We (he and I) were released New Years Eve day. Two weeks later, during a follow up echo cardiogram, we would learn that Josiah had numerous holes in his heart resulting in pulmonary hypertension...not good news! Two weeks later, we were at Children's where Josiah would undergo open heart surgery.
Josiah was released from Children's 4 days after surgery. Six weeks later, he was fully recovered. The weight continued to be a battle for several more months. Now, he is a thriving little boy.
To say we treasure every moment, is a gross understatement. To say we are thankful doesn't even come close to the gratitude we feel. We have an amazing family. We have an amazing life. We have been blessed a hundred fold. We know this much is true!
It's hard to believe what a difference a year can make.
Last year, at this time, I think I was running on pure adrenaline (and strength from above). My oldest brother had just died (in September) and we had put him to rest. Carl had had a medical emergency and was hospitalized for about two weeks. One week later, Josiah was born.
The following several months were typical of a family embracing a new baby. We were no different, just running on exhaustion having survived the chaos of the previous weeks.
In December, the older boys got colds. Josiah got one - it proved to be the best thing that could have happened. The 'cold' developed into bronchiolitis (and possible RSV). He was hospitalized at Children's for one night. We (he and I) were released New Years Eve day. Two weeks later, during a follow up echo cardiogram, we would learn that Josiah had numerous holes in his heart resulting in pulmonary hypertension...not good news! Two weeks later, we were at Children's where Josiah would undergo open heart surgery.
Josiah was released from Children's 4 days after surgery. Six weeks later, he was fully recovered. The weight continued to be a battle for several more months. Now, he is a thriving little boy.
To say we treasure every moment, is a gross understatement. To say we are thankful doesn't even come close to the gratitude we feel. We have an amazing family. We have an amazing life. We have been blessed a hundred fold. We know this much is true!
"For today and its blessings, I owe the world an attitude of gratitude"
- author unknown
Wednesday, February 29, 2012
New Tricks
Apparently, Josiah was listening to K and I on Monday. We joked that Josiah would soon be rolling over from back to side. We also predicted that, when it happened, he would pull both knees up to his chest and simply "fall" to the side. Tuesday morning, as if to say he had been listening, he proved the prediction true. He was playing in his playpen. He lifted both legs into the air, pulled his knees up to his chest, and rolled to his right side. As I tried to take a picture, he rolled onto his back (lol). He did this repeatedly. Now he seems to do so on purpose. He seems amused by his new accomplishment. I know we are. What a great milestone he has reached.
Today, while sitting on my lap, he actually held his own head up for about 3 seconds. He did so several times. I know we still have a ways to go for him to gain full head control but, hey, it's a start. He also laughed today. It was a real laugh and it was the most precious sound in the world.
Just when I thought he was falling into a predictable feeding schedule, he proved me wrong. Last night, he went to bed at midnight. Much to my despair, he woke up at 3:10am and didn't go back to sleep until 5:50am. Today, he decided to "graze" as opposed to stick to his every-three-hour feedings. I am sleep deprived and drained. To make matters worse, I have a horrible cold. I know it will all fall back into place. In the meanwhile, I am just hoping for a solid five hours of sleep tonight :)
Playgroup was scheduled for tomorrow morning, but we're going to bypass it this week. James and I are both battling a bad cold/cough and I certainly don't want to spread our germs around. Hopefully I'll feel less wiped-out tomorrow and can accomplish something at home.
Friday, we will return to the cardiologist for Josiah's check up. It's been five weeks since his open-heart surgery. I'm praying all is well.....we have every reason to believe that it is. I'm anxious to see his weight. I'm keeping my fingers crossed that we'll start to see substantial weight gain soon.
Until tomorrow my friends.....
Today, while sitting on my lap, he actually held his own head up for about 3 seconds. He did so several times. I know we still have a ways to go for him to gain full head control but, hey, it's a start. He also laughed today. It was a real laugh and it was the most precious sound in the world.
Just when I thought he was falling into a predictable feeding schedule, he proved me wrong. Last night, he went to bed at midnight. Much to my despair, he woke up at 3:10am and didn't go back to sleep until 5:50am. Today, he decided to "graze" as opposed to stick to his every-three-hour feedings. I am sleep deprived and drained. To make matters worse, I have a horrible cold. I know it will all fall back into place. In the meanwhile, I am just hoping for a solid five hours of sleep tonight :)
Playgroup was scheduled for tomorrow morning, but we're going to bypass it this week. James and I are both battling a bad cold/cough and I certainly don't want to spread our germs around. Hopefully I'll feel less wiped-out tomorrow and can accomplish something at home.
Friday, we will return to the cardiologist for Josiah's check up. It's been five weeks since his open-heart surgery. I'm praying all is well.....we have every reason to believe that it is. I'm anxious to see his weight. I'm keeping my fingers crossed that we'll start to see substantial weight gain soon.
Until tomorrow my friends.....
Wednesday, February 22, 2012
Hello bed :)
When we brought Josiah home from the hospital, we put him in his own crib on the very first night. He only lasted there about an hour. Being a newborn, he was up and down a lot that night. Not wanting to keep Carl up all night, I slept on the upstairs couch; Josiah slept in the portable crib in the living room (next to me). Those sleeping arrangements continued. First, I didn't want Carl's sleep to be interrupted (as he had just recently had major surgery). Second, I feared I would sleep too soundly in my own bed and not hear Josiah if he woke. Lastly, I knew I could remain more alert during nighttime feedings if I were upstairs. We had every intention of moving him back to his crib within a reasonable timeframe.
In December, when he became sick with bronchiolitis, we obtained a moderate sized humidifier. It was perfect for the living room; it wasn't very portable. I wanted to sleep nearby, just in case Josiah needed me. So, the sleeping room arrangements continued. Then, in January, we faced open-heart surgery. I was more concerned with Josiah (and his heart).....so nothing changed. After surgery, the same justifications continued.
Yesterday, I decided it was time to make the changeover. Today marks the four week anniversary of Josiah's open-heart surgery. He is breathing easy. He is eating well. He seems to be thriving. During the day, yesterday, I put Josiah in his crib for a nap. He successfully slept there for almost one hour. Last night, I waited until after the last feeding. He fell asleep in my arms and I carried him to his own room. He slept in his crib from 1:30am until 6:50am. For the first time since his birth, I had a full night sleep in my own bed. It was great to sleep in my own bed. It was great to sleep with my husband by my side. It's another simple pleasure in life so often taken for granted.
Today, I am grateful for the little things in life :)
In December, when he became sick with bronchiolitis, we obtained a moderate sized humidifier. It was perfect for the living room; it wasn't very portable. I wanted to sleep nearby, just in case Josiah needed me. So, the sleeping room arrangements continued. Then, in January, we faced open-heart surgery. I was more concerned with Josiah (and his heart).....so nothing changed. After surgery, the same justifications continued.
Yesterday, I decided it was time to make the changeover. Today marks the four week anniversary of Josiah's open-heart surgery. He is breathing easy. He is eating well. He seems to be thriving. During the day, yesterday, I put Josiah in his crib for a nap. He successfully slept there for almost one hour. Last night, I waited until after the last feeding. He fell asleep in my arms and I carried him to his own room. He slept in his crib from 1:30am until 6:50am. For the first time since his birth, I had a full night sleep in my own bed. It was great to sleep in my own bed. It was great to sleep with my husband by my side. It's another simple pleasure in life so often taken for granted.
Today, I am grateful for the little things in life :)
Thursday, February 2, 2012
Today's Follow-up Appt at Children's
We kept Jesse home from preschool today and brought all three kids to playgroup. Miss C. was happy to see the three boys. Jesse was happy to participate in playgroup (which he usually misses due to preschool). James jumped right back in like he was there yesterday (he's missed a couple of weeks). Josiah was awake and a bit cranky due to not being fed since 8am (the cut-off time in preparation for today's follow-up tests). A good time was had by all. We left playgroup at 10:30 and made our way to Children's Hospital.
We arrived at the appropriate floor. Carl took the two older boys upstairs to a children's playroom. Josiah and I headed into the room for testing. It was about 12:20pm. Josiah's vitals were good. Once again, his weight had dropped from 4.14k to 3.87k. They tell me this is normal post-op. Josiah's also been taking Lasix twice/daily, which is likely contributing to the weight loss. The MD came in and examined Josiah and said he sounded really good. Then, he was given the sedation (a liquid taken orally, which apparently tastes quite swill). About 15 minutes later, Josiah was asleep. It was 1pm. They began the sedated echo cardiogram.
During the next 70 minutes, I watched quietly. It was hard to discern what I was looking at. There were lots of blues and reds on the screen. It was difficult for me to tell if things looked good, or not. The room was quiet and dark. Few whispers were spoken between the technician and nurse; otherwise, it was my own thoughts idling away the time. During those times, it's easy to imagine all the things that could be wrong, the bad news you may receive, the fears are there. All the while, you hope for the best.
At about 2:20, they paged Josiah's cardiologist to let him know the echo cardiogram had been completed. While they waited for his arrival, they were able to complete the EKG (Josiah was still asleep, so it was quick and easy). The cardiologist arrived moments later, listened to Josiah's heart, and reviewed the results of the echo cardiogram. He said, "We couldn't have asked for a better outcome." Josiah is doing great!!! There are no holes in his heart. Nothing is leaking. The pressure in the right side of the heart is near normal. The size of the heart has already decreased. The surgery was a complete success. Part of me kept waiting for the "but," but it never came :). Josiah will have a simple follow-up office visit in 1 month (no sedation, no testing, just a simple office visit). They then removed the one suture Josiah had (from where the chest tube had been placed). The site looks great; it's healing nicely.
Once awake, Josiah nursed for a short time then fell back to sleep. I went to find Carl and the boys. We made the appt for next month's follow-up, went downstairs for Josiah's chest x-ray, then made our way to the cafeteria for a late lunch/early dinner. By the time we left the hospital, it was approximately 5:30pm. The cardiologist had already left a message on my cell phone stating Josiah's chest x-ray came back perfect. Josiah no longer needs the Lasix. We are delighted.
It was a quiet ride home as our three beautiful boys slept all the way home. Carl and I are tired. We are relieved. We are looking forward to the next few days, at home, with our three healthy children.
Recently, on facebook, a friend suggested that my brother Scott (who died in Sept) was watching over Josiah. I like that idea. Scott had his faults, here on earth. However, Scott was drawn to those in need. He enjoyed helping the downtrodden, even when he was one of them. My brother would have loved his newest nephew. Perhaps God knew that Josiah was going to need an angel. Maybe that's why he brought Scott Home....to be Josiah's Guardian Angel <3
We arrived at the appropriate floor. Carl took the two older boys upstairs to a children's playroom. Josiah and I headed into the room for testing. It was about 12:20pm. Josiah's vitals were good. Once again, his weight had dropped from 4.14k to 3.87k. They tell me this is normal post-op. Josiah's also been taking Lasix twice/daily, which is likely contributing to the weight loss. The MD came in and examined Josiah and said he sounded really good. Then, he was given the sedation (a liquid taken orally, which apparently tastes quite swill). About 15 minutes later, Josiah was asleep. It was 1pm. They began the sedated echo cardiogram.
During the next 70 minutes, I watched quietly. It was hard to discern what I was looking at. There were lots of blues and reds on the screen. It was difficult for me to tell if things looked good, or not. The room was quiet and dark. Few whispers were spoken between the technician and nurse; otherwise, it was my own thoughts idling away the time. During those times, it's easy to imagine all the things that could be wrong, the bad news you may receive, the fears are there. All the while, you hope for the best.
At about 2:20, they paged Josiah's cardiologist to let him know the echo cardiogram had been completed. While they waited for his arrival, they were able to complete the EKG (Josiah was still asleep, so it was quick and easy). The cardiologist arrived moments later, listened to Josiah's heart, and reviewed the results of the echo cardiogram. He said, "We couldn't have asked for a better outcome." Josiah is doing great!!! There are no holes in his heart. Nothing is leaking. The pressure in the right side of the heart is near normal. The size of the heart has already decreased. The surgery was a complete success. Part of me kept waiting for the "but," but it never came :). Josiah will have a simple follow-up office visit in 1 month (no sedation, no testing, just a simple office visit). They then removed the one suture Josiah had (from where the chest tube had been placed). The site looks great; it's healing nicely.
Once awake, Josiah nursed for a short time then fell back to sleep. I went to find Carl and the boys. We made the appt for next month's follow-up, went downstairs for Josiah's chest x-ray, then made our way to the cafeteria for a late lunch/early dinner. By the time we left the hospital, it was approximately 5:30pm. The cardiologist had already left a message on my cell phone stating Josiah's chest x-ray came back perfect. Josiah no longer needs the Lasix. We are delighted.
It was a quiet ride home as our three beautiful boys slept all the way home. Carl and I are tired. We are relieved. We are looking forward to the next few days, at home, with our three healthy children.
Recently, on facebook, a friend suggested that my brother Scott (who died in Sept) was watching over Josiah. I like that idea. Scott had his faults, here on earth. However, Scott was drawn to those in need. He enjoyed helping the downtrodden, even when he was one of them. My brother would have loved his newest nephew. Perhaps God knew that Josiah was going to need an angel. Maybe that's why he brought Scott Home....to be Josiah's Guardian Angel <3
Wednesday, February 1, 2012
What a Difference a Week Makes
It's hard to believe what a difference a week makes.
One week ago, right now, we were sitting in a small conference room at Children's Hospital, speaking to our son's surgeon. Josiah had been in the operating room since 8am. The surgeon was about to go into the room to perform open-heart surgery on our little man. The surgery was over at 11:40am and the surgeon came out to discuss the successful operation. Josiah spent two days in ICU, then two days in the cardiac unit. We came home on Sunday.
Josiah is stronger than ever. He is feeding and sleeping well. He continues to show some signs of discomfort which is readily eased by Tylenol.
His EI worker comes out today to work with him. Tomorrow, we are off to Children's for his follow-up sedated echo cardiogram. Next week, we have a follow-up at the pediatrician's office.
I am thankful for this past week and in awe of my son's strength and determination.
Josiah truly is my little hero.
One week ago, right now, we were sitting in a small conference room at Children's Hospital, speaking to our son's surgeon. Josiah had been in the operating room since 8am. The surgeon was about to go into the room to perform open-heart surgery on our little man. The surgery was over at 11:40am and the surgeon came out to discuss the successful operation. Josiah spent two days in ICU, then two days in the cardiac unit. We came home on Sunday.
Josiah is stronger than ever. He is feeding and sleeping well. He continues to show some signs of discomfort which is readily eased by Tylenol.
His EI worker comes out today to work with him. Tomorrow, we are off to Children's for his follow-up sedated echo cardiogram. Next week, we have a follow-up at the pediatrician's office.
I am thankful for this past week and in awe of my son's strength and determination.
Josiah truly is my little hero.
Monday, January 30, 2012
1st Morning at Home
We left the hospital at about 5pm, yesterday. Josiah seemed to know he was going home. As he was wheeled out in his stroller, he was fascinated looking around. In his car seat, he fell asleep quickly and slept until we reached home.
Jesse (the oldest) was watching out the window when we arrived home. We were met by both boys as we came up our staircase. The boys were happy to see Mama. They were happy to see their baby brother. I showed Jesse Josiah's 'zipper' (aka scar, as Daddy calls it).
Josiah ate well and fell asleep around 9pm. He proved happy to be home; he slept until 6am.
Josiah's voice seems stronger than ever. He is eating well; he even burps after feeds (something he never did before). He looks great.
We have to schedule another sedated echo cardiogram for later in the week, just to be sure the surgery 'stuck'. We have every reason to believe that it did :) In a week or so, we fill follow-up with the pediatrician. It was fun reading Josiah's discharge papers. They suggest a child who used to have heart disease (past tense). They suggest a child lacking a heart murmur (what a great thing!). Josiah's labs were perfect, all numbers falling within normal limits. They suggest a child with a history of failure to thrive (which we do not anticipate to be a continued problem). They suggest a child who's broken heart was made whole. What a miracle <3.
I had fun playing with the other boys last night. They were both pleased to have Mama sing and read to them before bed. Our night-time routine was back; normalcy had been returned.
The week continues as normal. James's EI worker will come to play with him this morning (something he greatly enjoys). Jesse's back to preschool (and pleased about it). We will take the younger boys to playgroup later in the week.
It's nice to be home. Everything just feels right :)
Jesse (the oldest) was watching out the window when we arrived home. We were met by both boys as we came up our staircase. The boys were happy to see Mama. They were happy to see their baby brother. I showed Jesse Josiah's 'zipper' (aka scar, as Daddy calls it).
Josiah ate well and fell asleep around 9pm. He proved happy to be home; he slept until 6am.
Josiah's voice seems stronger than ever. He is eating well; he even burps after feeds (something he never did before). He looks great.
We have to schedule another sedated echo cardiogram for later in the week, just to be sure the surgery 'stuck'. We have every reason to believe that it did :) In a week or so, we fill follow-up with the pediatrician. It was fun reading Josiah's discharge papers. They suggest a child who used to have heart disease (past tense). They suggest a child lacking a heart murmur (what a great thing!). Josiah's labs were perfect, all numbers falling within normal limits. They suggest a child with a history of failure to thrive (which we do not anticipate to be a continued problem). They suggest a child who's broken heart was made whole. What a miracle <3.
I had fun playing with the other boys last night. They were both pleased to have Mama sing and read to them before bed. Our night-time routine was back; normalcy had been returned.
The week continues as normal. James's EI worker will come to play with him this morning (something he greatly enjoys). Jesse's back to preschool (and pleased about it). We will take the younger boys to playgroup later in the week.
It's nice to be home. Everything just feels right :)
Sunday, January 29, 2012
Going Home
Josiah woke at 1am for a weight check and feeding. He's weighing in at 3.14k (down from 3.15 the night before). Then he slept until 7am. We woke to confirmation of today's planned discharge. Carl is coming at 3pm to take us home.
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate.
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate.
Saturday, January 28, 2012
72 Hours Post Surgery
Josiah had another great night. He woke up twice for feedings (1am & 4:30am). In addition to overnight feeds, he got another EKG, was weighed (4.19k), had a sponge bath, and his oxygen was removed. After his busy night, he slept until 9am.
I am amazed by this little boy. He looks incredible. He is alert; his eyes are bright. He somehow appears stronger.
This morning, I was able to take him for a walk to radiology where he received a chest x-ray. He did very well. Then, he accompanied Mama down to the cafeteria for breakfast. Afterwards, he had labs drawn and his pacing wires were removed. Nothing is left except the simple heart and oxygenation monitors.
Carl came to visit today. Josiah was happy to see Daddy. At 2:30pm, we took Josiah for another walk to the cafeteria for lunch. Josiah enjoyed the change of scenery. He fell asleep on the way back to the room.
Josiah has continued to eat well, which makes this Mama very happy.
Josiah is sleeping now. Carl will be leaving for home soon. I want to go home. I want to take Josiah home. I'm growing frustrated. I miss the boys. I can't wait to go home <3
I am amazed by this little boy. He looks incredible. He is alert; his eyes are bright. He somehow appears stronger.
This morning, I was able to take him for a walk to radiology where he received a chest x-ray. He did very well. Then, he accompanied Mama down to the cafeteria for breakfast. Afterwards, he had labs drawn and his pacing wires were removed. Nothing is left except the simple heart and oxygenation monitors.
Carl came to visit today. Josiah was happy to see Daddy. At 2:30pm, we took Josiah for another walk to the cafeteria for lunch. Josiah enjoyed the change of scenery. He fell asleep on the way back to the room.
Josiah has continued to eat well, which makes this Mama very happy.
Josiah is sleeping now. Carl will be leaving for home soon. I want to go home. I want to take Josiah home. I'm growing frustrated. I miss the boys. I can't wait to go home <3
Friday, January 27, 2012
Late Night Update
Josiah has continued to progress in, what seems like, an unprecedented fashion :)
After his afternoon nap, he was allowed to nurse for the first time since prior to surgery. He did GREAT! He's back to his every four hours feeding routine. The arterial line has been removed as well as several IVs. He continues to receive medication to prevent blood-clots and a diuretic. He's also receiving high blood pressure medication. The surgeon explained that Josiah's heart has been essentially bench pressing 150lbs (due to the holes). The holes are gone, yet the heart hasn't learned that it no longer needs to pump with such aggression. The discrepancy causes his blood pressure to be high....this will improve with time. Although he may be sent home on medication, the belief is that it will all be short-term medication. That is such good news.
Tomorrow, Josiah's central line will be removed and he will be moved OUT OF ICU. It's amazing how well he is doing.
While feeding him this evening, a 'code blue' was called on the unit. The dichotomy of emotion was strange. On the one hand, my heart poured out to the child/family who was being affected; the other half of me was thankful that it wasn't my child/family. Some time later, I was leaving the unit to take a walk. I used the same hallway I'd used so many times before. I quickly came across a swarm of staff members who redirected me to a different exit. They were in front of a room who was housed by a little boy. I remember (previously) thinking that this child had been here awhile as the window to his room was decorated with large posters, his name, cut out snowflakes, etc. I will simply refer to him as "W." As I exited the unit, I walked by a small consult room. There were two staff members talking to a young woman (who was crying). I heard one staff member say, "We'll take everything off, clean him up, and you can spend as much time as you need." I inwardly gasped for air. She had just lost her little man. How absolutely terrifying and tragic. I keep thinking of that little boy and hope he is resting peacefully with the angels in Heaven. Sweet eternal dreams little W.
Tonight, I learned that a dear friend had a heart attack. He's young. Thank God, he's ok. It shows you that you just never know. Always remember to hold your loved ones close & tell them you love them, often. Hold on to the good; let go of the bad. Harbor forgiveness, not resentment. Be thankful, not bitter. Enjoy every minute you're given.
It's late and I should nap. Tomorrow, we continue our own amazing journey. I can't wait!!!
Until then, my friends.....
After his afternoon nap, he was allowed to nurse for the first time since prior to surgery. He did GREAT! He's back to his every four hours feeding routine. The arterial line has been removed as well as several IVs. He continues to receive medication to prevent blood-clots and a diuretic. He's also receiving high blood pressure medication. The surgeon explained that Josiah's heart has been essentially bench pressing 150lbs (due to the holes). The holes are gone, yet the heart hasn't learned that it no longer needs to pump with such aggression. The discrepancy causes his blood pressure to be high....this will improve with time. Although he may be sent home on medication, the belief is that it will all be short-term medication. That is such good news.
Tomorrow, Josiah's central line will be removed and he will be moved OUT OF ICU. It's amazing how well he is doing.
While feeding him this evening, a 'code blue' was called on the unit. The dichotomy of emotion was strange. On the one hand, my heart poured out to the child/family who was being affected; the other half of me was thankful that it wasn't my child/family. Some time later, I was leaving the unit to take a walk. I used the same hallway I'd used so many times before. I quickly came across a swarm of staff members who redirected me to a different exit. They were in front of a room who was housed by a little boy. I remember (previously) thinking that this child had been here awhile as the window to his room was decorated with large posters, his name, cut out snowflakes, etc. I will simply refer to him as "W." As I exited the unit, I walked by a small consult room. There were two staff members talking to a young woman (who was crying). I heard one staff member say, "We'll take everything off, clean him up, and you can spend as much time as you need." I inwardly gasped for air. She had just lost her little man. How absolutely terrifying and tragic. I keep thinking of that little boy and hope he is resting peacefully with the angels in Heaven. Sweet eternal dreams little W.
Tonight, I learned that a dear friend had a heart attack. He's young. Thank God, he's ok. It shows you that you just never know. Always remember to hold your loved ones close & tell them you love them, often. Hold on to the good; let go of the bad. Harbor forgiveness, not resentment. Be thankful, not bitter. Enjoy every minute you're given.
It's late and I should nap. Tomorrow, we continue our own amazing journey. I can't wait!!!
Until then, my friends.....
Thursday, January 26, 2012
Afternoon Update
I can't believe how far we have come in the last 30 hours. Josiah never ceases to amaze me.
Josiah remains stable and is doing great! He continues to sleep most of the time lol.
As promised, the catheter and chest tube have been removed. The tape/monitors across his forehead have been removed. The breathing machine is on "support mode" which means Josiah is breathing ON HIS OWN! What's funny is that his numbers are looking better OFF the machine than they did ON the machine (hahahaha!). Josiah is asserting his need for independence....just like his brothers :).
He's waking up....be right back.
Ok. It's 30 minutes later and we've made more progress. Josiah woke up. They've removed the tube from his mouth. They've removed the breathing tube completely! That's a huge step. He made a few vocalizations but they remain very weak. Now he's exhausted & sleeping again :) They will let him rest now. We are going to attempt nursing him this afternoon, once we get the thumbs up.
Meanwhile, I was able to snag a computer for use in Josiah's room - SWEET! Carl is here now....so glad to have his company. While Josiah sleeps, we will run and get some lunch.
I'll be back with more updates. All my love to friends & family <3
Josiah remains stable and is doing great! He continues to sleep most of the time lol.
As promised, the catheter and chest tube have been removed. The tape/monitors across his forehead have been removed. The breathing machine is on "support mode" which means Josiah is breathing ON HIS OWN! What's funny is that his numbers are looking better OFF the machine than they did ON the machine (hahahaha!). Josiah is asserting his need for independence....just like his brothers :).
He's waking up....be right back.
Ok. It's 30 minutes later and we've made more progress. Josiah woke up. They've removed the tube from his mouth. They've removed the breathing tube completely! That's a huge step. He made a few vocalizations but they remain very weak. Now he's exhausted & sleeping again :) They will let him rest now. We are going to attempt nursing him this afternoon, once we get the thumbs up.
Meanwhile, I was able to snag a computer for use in Josiah's room - SWEET! Carl is here now....so glad to have his company. While Josiah sleeps, we will run and get some lunch.
I'll be back with more updates. All my love to friends & family <3
First Morning in CICU
Josiah had a great night. He continues to sleep. His vitals remain good and he continues to be stable.
I stayed by Josiah's bedside last night. I would say, "I slept here," but that would intimate the ability to sleep in an ICU room where staff is constantly monitoring a child's progress LOL. Despite 'not ideal' sleep - I feel great today. I am just so thankful for everything and everybody in my life.
Josiah has met several recovery milestones already. This morning's plan: remove chest tube and breathing tube (plus a few others). They will sedate him for the removal of tubes, then will allow him to wake up. With any luck, he'll be able to eat this afternoon. After breastfeeding exclusively for 3 months, it's been strange to not have that time with him. I can't wait for those moments again :)
The care here is what I expected - phenomenal! Josiah continues to prove his resolve. He is here for a purpose; nothing is going to slow him down. He is our littlest angel. He's our little heart hero <3
I'm going to grab some breakfast. I'll be back with more updates :)
I stayed by Josiah's bedside last night. I would say, "I slept here," but that would intimate the ability to sleep in an ICU room where staff is constantly monitoring a child's progress LOL. Despite 'not ideal' sleep - I feel great today. I am just so thankful for everything and everybody in my life.
Josiah has met several recovery milestones already. This morning's plan: remove chest tube and breathing tube (plus a few others). They will sedate him for the removal of tubes, then will allow him to wake up. With any luck, he'll be able to eat this afternoon. After breastfeeding exclusively for 3 months, it's been strange to not have that time with him. I can't wait for those moments again :)
The care here is what I expected - phenomenal! Josiah continues to prove his resolve. He is here for a purpose; nothing is going to slow him down. He is our littlest angel. He's our little heart hero <3
I'm going to grab some breakfast. I'll be back with more updates :)
Wednesday, January 25, 2012
Surgery was a SUCCESS
Josiah got his bath at 1:30am. He got his last feeding from 2am-3am. Then, he napped. We left at 5am for the drive into Children's. We arrived at the hospital parking garage at 6:15am and were checked in by 6:45am. First stop, pre-op admitting. We were escorted to the pre-op holding area. Josiah was hungry by then. Luckily, he recently discovered his thumb which was successful at pacifying him :)
At 7:50am, members of the team arrived. Nurse Tom allowed us our hugs/kisses with Josiah then took him from me. He immediately voiced a fondness for our little man. Josiah was given an oral sedative and handled it like a trooper. Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile). Carl & I were escorted to the family waiting area.
The RN liaisons there are wonderful. They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us. At 9am, the surgeon came in to introduce himself and explain the procedure. The wait began.
The first call came around 10am. Josiah had handled anesthesia well. The incision had been made at 9:30am. He was transferred to a heart/lung machine at 10am. The transfer to machine went smoothly. Josiah was stable and doing very well. Carl & I walked around and tried to waste time. We made our way back to the waiting room at 11am. At 11:40, the second call came. The repairs to the heart had been successfully completed. He transferred smoothly off the heart/lung machine. They were about to finish the procedure. Josiah was stable and doing very well. What great news!
At 12 noon, Dr. E. came in to speak with us. The VSD was much larger than anyone predicted. It was partially covered by a valve which is likely why it fooled us early on. Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place. The ASDs were numerous (about 5-6) and were all closed successfully. They performed an echo cardiogram, which confirmed that repairs had been completed with great success. The elevated pressure in his heart immediately registered as normal :) Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!
He's being moved to ICU as I update this blog. Within the hour, we will be able to see Josiah again. We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break. Josiah is on a breathing tube - I know that will be the hardest thing to see. My heart is still leaping for joy that my little man has come through surgery without complication. His heart is whole and is beating on it's own.
Josiah should be able to be removed from the breathing tube later today or tomorrow morning. Then, he can start nursing again. Expected stay 5-7 days. We can't wait to bring him home. I already miss the older boys :)
I can't thank you all enough for your kind words of support and encouragement. We wouldn't have gotten through today without you! It's a beautiful journey and I'm glad you're able to share it with us.
Off to ICU....I can't wait to see Josiah <3
At 7:50am, members of the team arrived. Nurse Tom allowed us our hugs/kisses with Josiah then took him from me. He immediately voiced a fondness for our little man. Josiah was given an oral sedative and handled it like a trooper. Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile). Carl & I were escorted to the family waiting area.
The RN liaisons there are wonderful. They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us. At 9am, the surgeon came in to introduce himself and explain the procedure. The wait began.
The first call came around 10am. Josiah had handled anesthesia well. The incision had been made at 9:30am. He was transferred to a heart/lung machine at 10am. The transfer to machine went smoothly. Josiah was stable and doing very well. Carl & I walked around and tried to waste time. We made our way back to the waiting room at 11am. At 11:40, the second call came. The repairs to the heart had been successfully completed. He transferred smoothly off the heart/lung machine. They were about to finish the procedure. Josiah was stable and doing very well. What great news!
At 12 noon, Dr. E. came in to speak with us. The VSD was much larger than anyone predicted. It was partially covered by a valve which is likely why it fooled us early on. Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place. The ASDs were numerous (about 5-6) and were all closed successfully. They performed an echo cardiogram, which confirmed that repairs had been completed with great success. The elevated pressure in his heart immediately registered as normal :) Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!
He's being moved to ICU as I update this blog. Within the hour, we will be able to see Josiah again. We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break. Josiah is on a breathing tube - I know that will be the hardest thing to see. My heart is still leaping for joy that my little man has come through surgery without complication. His heart is whole and is beating on it's own.
Josiah should be able to be removed from the breathing tube later today or tomorrow morning. Then, he can start nursing again. Expected stay 5-7 days. We can't wait to bring him home. I already miss the older boys :)
I can't thank you all enough for your kind words of support and encouragement. We wouldn't have gotten through today without you! It's a beautiful journey and I'm glad you're able to share it with us.
Off to ICU....I can't wait to see Josiah <3
Tuesday, January 24, 2012
The Day Before Surgery
We took Josiah for pre-op testing today. He had an EKG and labs, which all came back normal (a big relief). His weight had dropped from 9.3 lbs to 8.7 lbs since Friday....that was frustrating to hear. Given that he's been on Lasix since Friday, the medical staff was not surprised by the weight loss.
We spoke with a member of the anesthesiology and surgery departments. Releases were signed. We were given a tour of ICU, Josiah's first stop after surgery. We can bring a computer, as long as we don't plug it in (Wow! I guess I'll be leaving the computer at home LOL). We can have a drink in Josiah's room, as long as it has a cover on it. We can eat, as long as it's in the family room. We can have our cell phone, as long as we're in the hallway outside of the unit. Ok, looks like this stay won't be quite as comfortable as I had hoped. The priority is Josiah so it matters not. Sometimes, a little extra comfort just helps. Oh well.
We were home by 2pm, which was nice. We all took a nap. I checked in with my folks; the boys are doing well. We've cleaned up the house a bit. I'm not planning on getting a lot of sleep tonight. It's 10:43pm now. We still have to pack for Josiah (and us). Josiah needs a bath. And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time. We're leaving the house at 5am to assure the 7am check-in time. Traffic can be horrible, even that early.
It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours. It's hard knowing that they will stop his little heart from beating, in order to fix it. It's hard knowing that he will have tubes, and breathing machines, and goodness knows what! I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%). It's hard knowing that he will be in pain. On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.
God, please take care of my son!
Josiah, be strong my littlest angel <3
We spoke with a member of the anesthesiology and surgery departments. Releases were signed. We were given a tour of ICU, Josiah's first stop after surgery. We can bring a computer, as long as we don't plug it in (Wow! I guess I'll be leaving the computer at home LOL). We can have a drink in Josiah's room, as long as it has a cover on it. We can eat, as long as it's in the family room. We can have our cell phone, as long as we're in the hallway outside of the unit. Ok, looks like this stay won't be quite as comfortable as I had hoped. The priority is Josiah so it matters not. Sometimes, a little extra comfort just helps. Oh well.
We were home by 2pm, which was nice. We all took a nap. I checked in with my folks; the boys are doing well. We've cleaned up the house a bit. I'm not planning on getting a lot of sleep tonight. It's 10:43pm now. We still have to pack for Josiah (and us). Josiah needs a bath. And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time. We're leaving the house at 5am to assure the 7am check-in time. Traffic can be horrible, even that early.
It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours. It's hard knowing that they will stop his little heart from beating, in order to fix it. It's hard knowing that he will have tubes, and breathing machines, and goodness knows what! I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%). It's hard knowing that he will be in pain. On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.
God, please take care of my son!
Josiah, be strong my littlest angel <3
Sunday, January 22, 2012
Preparations for the week to come....
My mind has been reeling. Constant check-lists going through my head. Have I contacted everyone I need to? Have I cancelled appointments that were previously scheduled? What do I need to pack for the boys? What do I need to pack? What needs to get done at the house before we leave?
The phone call came Friday morning. Pre-op Tuesday. Open-heart surgery Wednesday. So much to do now. My first call was to my Mom who graciously agreed to take the older boys for most of the week. Jesse will go to school on Monday; James will have his EI appointment. Then, off to their grandparents house for the week. Jesse's teacher has already been notified of his anticipated absence this week. Playgroup has been notified of James's absence this week. I've notified the pediatrician and EI.
It's been a fury of laundry this weekend. I need to be sure the we all have the clothes we may need for the week. Jesse's bag is packed. James clothes are ready to be packed. He's in bed, so this will wait until morning. Blankets, best friends (ie, stuffed animals), etc will all be packed last. I've explained to Jesse what's happening. James just knows he's having several sleepovers at 'Mimi's' house :)
Tomorrow is a busy day. Finish packing the older boys. The lists keep running through my head. Don't forget to pack this; don't forget to pack that. Jesse has school. James has EI. Their favorite hairdresser is coming to our house to cut their hair. Josiah has EI. I'm going to try to squeeze in a trip to the dentist in the a.m. Still, I need to find time for laundry, packing, post office, and grocery store. Later in the day, we'll take the boys to my parents' house.
Tuesday, pre-op. Wednesday, surgery. I will stay with Josiah until he returns home. Carl will make the trips back-and-forth from hospital to home. Knowing ahead helps. I'll have clothes, snacks, a few DVDs, and my computer with me. I won't feel so out of touch. I know that will be helpful.
Our new DS parent friends are great. One has already told us she will be bringing us a care package while we are there. Another has told us she will be checking on us. Carl's brother is coming by to check on us. Aunts/Uncles have offered to assist. Friends have offered an ear and a hug, as needed. They may sound like small things, but they are not!
"Be faithful in small things because it is in them that your strength lies." - Mother Teresa
Everyday, I am humbled by the support we receive from others. We couldn't ask for better friends or family. We hope they know how much we appreciate them.
"A friend is someone who reaches out for your hand...and touches your heart." - anonymous
The phone call came Friday morning. Pre-op Tuesday. Open-heart surgery Wednesday. So much to do now. My first call was to my Mom who graciously agreed to take the older boys for most of the week. Jesse will go to school on Monday; James will have his EI appointment. Then, off to their grandparents house for the week. Jesse's teacher has already been notified of his anticipated absence this week. Playgroup has been notified of James's absence this week. I've notified the pediatrician and EI.
It's been a fury of laundry this weekend. I need to be sure the we all have the clothes we may need for the week. Jesse's bag is packed. James clothes are ready to be packed. He's in bed, so this will wait until morning. Blankets, best friends (ie, stuffed animals), etc will all be packed last. I've explained to Jesse what's happening. James just knows he's having several sleepovers at 'Mimi's' house :)
Tomorrow is a busy day. Finish packing the older boys. The lists keep running through my head. Don't forget to pack this; don't forget to pack that. Jesse has school. James has EI. Their favorite hairdresser is coming to our house to cut their hair. Josiah has EI. I'm going to try to squeeze in a trip to the dentist in the a.m. Still, I need to find time for laundry, packing, post office, and grocery store. Later in the day, we'll take the boys to my parents' house.
Tuesday, pre-op. Wednesday, surgery. I will stay with Josiah until he returns home. Carl will make the trips back-and-forth from hospital to home. Knowing ahead helps. I'll have clothes, snacks, a few DVDs, and my computer with me. I won't feel so out of touch. I know that will be helpful.
Our new DS parent friends are great. One has already told us she will be bringing us a care package while we are there. Another has told us she will be checking on us. Carl's brother is coming by to check on us. Aunts/Uncles have offered to assist. Friends have offered an ear and a hug, as needed. They may sound like small things, but they are not!
"Be faithful in small things because it is in them that your strength lies." - Mother Teresa
Everyday, I am humbled by the support we receive from others. We couldn't ask for better friends or family. We hope they know how much we appreciate them.
"A friend is someone who reaches out for your hand...and touches your heart." - anonymous
Friday, January 20, 2012
Synagis shot & Surgery scheduled
Yesterday, we took Josiah to the pediatrician for his first Synagis shot. He tolerated the shot well & had no adverse affects.
This morning, we received the anticipated call from Children's. Josiah will undergo open heart surgery next Wednesday, Jan 25th. Pre-op is scheduled for Tues.
Despite being anxious about the surgery, we are so pleased that the wait has lessened. 5 days....the countdown begins.
We've arranged for the boys to go to my parents house for the better part of next week. We are so thankful to them for all of their support. We are also thankful to the boys aunts/uncles who are always a constant support. And, as always, we're thankful for friends who are always willing to lend a listening ear, or words of encouragement. It truly does take a village.....
This morning, we received the anticipated call from Children's. Josiah will undergo open heart surgery next Wednesday, Jan 25th. Pre-op is scheduled for Tues.
Despite being anxious about the surgery, we are so pleased that the wait has lessened. 5 days....the countdown begins.
We've arranged for the boys to go to my parents house for the better part of next week. We are so thankful to them for all of their support. We are also thankful to the boys aunts/uncles who are always a constant support. And, as always, we're thankful for friends who are always willing to lend a listening ear, or words of encouragement. It truly does take a village.....
Friday, January 13, 2012
Cardiology update, Open-heart surgery, and Synagis shots
Josiah's cardiologist called this a.m. He's reviewed, and re-reviewed, the results from last weeks echo cardiogram. He's consulted with his Senior staff members, and they have reached a consensus.
Josiah has multiple ASD's. Due to the enlargement on the right side of his heart, it is believed that there is more blood flowing between chambers than originally thought. Unfortunately, this can lead to pulmonary hypertension. For a person without Trisomy 21 (Down Syndrome) the damage could take a decade or more. For someone with DS, the damage can occur within one year. Josiah is three months old now. They want to prevent his lungs from becoming damaged. As our pediatrician told us, pulmonary hypertension is often irreversible. Therefore, they have made the smartest decision to protect our little one.
Josiah will have open-heart surgery.
Next week, we will be bringing Josiah to Children's for a sedated echo cardiogram. He will also have an xray of his chest done (perhaps this is to confirm the earlier suspicion of RSV, perhaps it's just to gain an image of his lungs).
The cardiologist put in a surgical request today. We have been told that we will be hearing from the surgical clinic within 7-10 days. Surgery will likely occur in 4-8 weeks.
Had that original VSD not been found, we would probably be more flooded with emotion now. Mind you, we didn't know about the ASD's. We had prepared, early on, that Josiah would need surgery within the first 6 months of life. Believing the VSD had closed was a huge relief, but did not erase that initial preparation for what was to come. I'm glad about that.
You never want to be told that your baby needs open-heart surgery but the statistics are comforting. This is considered an 'easy' operation with a high success and rapid recovery rate. Josiah will likely be home within a few days of having surgery.
I cannot speak highly enough about the support system we have, and have built. Our pediatricians office called today stating they will putting in a request for Josiah to receive the Synagis shots for RSV. We didn't have to ask....they simply took it upon themselves to initiate. The following is information I copied from the website http://pediatrics.about.com/od/rsv/a/1006_synagis.htm about Synagis.
Although the flu and flu shots get most of the attention in the fall and winter, parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.
While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.
Children who are considered high risk for RSV infections and who should get monthly Synagis shots during RSV season, which typically lasts from November through April, include:
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
2) Infants born at or before 28 weeks gestation and who are less than 12 months old at the start of RSV season, which means that these preemies will need Synagis for at least one RSV season.
3) Infants born at 29 to before 32 weeks, 0 days gestation and who are less than 6 months old at the start of RSV season.
4) Infants born at 32 weeks, 0 day to 35 weeks gestation and who are less than 3 months old at the start of RSV season or who are born during RSV season and who have at least one of the following risk factors:
6) Certain infants born before 35 weeks with congenital abnormalities of the airway or neuromuscular disease.
The NICU might also set up your child's Synagis shots before you leave the nursery if your child was born prematurely.
Keep in mind that it can take some time to get the Synagis shots approved by your insurance company, so start early if your child is in a high risk group and needs Synagis this RSV season.
I read two quotes today (on a social media networking site). It's funny how sometimes things seem like they were intended for you to see, at just the right time :)
Josiah has multiple ASD's. Due to the enlargement on the right side of his heart, it is believed that there is more blood flowing between chambers than originally thought. Unfortunately, this can lead to pulmonary hypertension. For a person without Trisomy 21 (Down Syndrome) the damage could take a decade or more. For someone with DS, the damage can occur within one year. Josiah is three months old now. They want to prevent his lungs from becoming damaged. As our pediatrician told us, pulmonary hypertension is often irreversible. Therefore, they have made the smartest decision to protect our little one.
Josiah will have open-heart surgery.
Next week, we will be bringing Josiah to Children's for a sedated echo cardiogram. He will also have an xray of his chest done (perhaps this is to confirm the earlier suspicion of RSV, perhaps it's just to gain an image of his lungs).
The cardiologist put in a surgical request today. We have been told that we will be hearing from the surgical clinic within 7-10 days. Surgery will likely occur in 4-8 weeks.
Had that original VSD not been found, we would probably be more flooded with emotion now. Mind you, we didn't know about the ASD's. We had prepared, early on, that Josiah would need surgery within the first 6 months of life. Believing the VSD had closed was a huge relief, but did not erase that initial preparation for what was to come. I'm glad about that.
You never want to be told that your baby needs open-heart surgery but the statistics are comforting. This is considered an 'easy' operation with a high success and rapid recovery rate. Josiah will likely be home within a few days of having surgery.
I cannot speak highly enough about the support system we have, and have built. Our pediatricians office called today stating they will putting in a request for Josiah to receive the Synagis shots for RSV. We didn't have to ask....they simply took it upon themselves to initiate. The following is information I copied from the website http://pediatrics.about.com/od/rsv/a/1006_synagis.htm about Synagis.
Although the flu and flu shots get most of the attention in the fall and winter, parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.
While RSV, or the respiratory syncytial virus, may just cause a cold in older children, it can cause a serious and life threatening infection in younger high risk children. These children, including premature babies, can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections, and pneumonia.
Children who are considered high risk for RSV infections and who should get monthly Synagis shots during RSV season, which typically lasts from November through April, include:
1) Infants and children under age 2 years who have required treatment for chronic lung disease, such as oxygen, bronchodilators, diuretics, or steroids, within 6 months of the start of RSV season.
2) Infants born at or before 28 weeks gestation and who are less than 12 months old at the start of RSV season, which means that these preemies will need Synagis for at least one RSV season.
3) Infants born at 29 to before 32 weeks, 0 days gestation and who are less than 6 months old at the start of RSV season.
4) Infants born at 32 weeks, 0 day to 35 weeks gestation and who are less than 3 months old at the start of RSV season or who are born during RSV season and who have at least one of the following risk factors:
- child care attendance (daycare)
- has a siblings less than five years old
6) Certain infants born before 35 weeks with congenital abnormalities of the airway or neuromuscular disease.
Where to Get Synagis
Because Synagis is so expensive, it is unlikely that you will be able to get your child's Synagis shots from your pediatrician. Instead, your pediatrician will probably refer you to a 'Synagis clinic' or a home health agency for the Synagis shots.The NICU might also set up your child's Synagis shots before you leave the nursery if your child was born prematurely.
Keep in mind that it can take some time to get the Synagis shots approved by your insurance company, so start early if your child is in a high risk group and needs Synagis this RSV season.
What You Need To Know
- Once you start Synagis during an RSV season, you typically complete the season, even if your child outgrows his risk factor. For example, if your 31 week preemie started his Synagis shots when he was 5 months old in November, you wouldn't stop them in December just because he was now 6 months old. If your child's risk factor was attending daycare and your child is now staying home, you might talk to your pediatrician about whether or not you needed to continue your infant's Synagis shots though.
- During a typical RSV season, kids get their last RSV shot in March, which provides protection into April. The timing of the last shot may vary though, depending on whether or not experts are still seeing a lot of children with RSV into early or late April.
- Some experts consider multiple births, crowded living conditions, family history of asthma, and low birth weight, to be additional risk factors to use when considering which 32 to 35 week preemies should get Synagis.
I read two quotes today (on a social media networking site). It's funny how sometimes things seem like they were intended for you to see, at just the right time :)
- "When life puts you in tough situations, Don't say, "Why me?" Just say, "Try me!"
- "Don't believe in miracles - depend on them" ~ Laurence J. Peter
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