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!
Showing posts with label cardiologist. Show all posts
Showing posts with label cardiologist. Show all posts
Saturday, May 4, 2013
Friday, April 6, 2012
PT, Weight, and Cardiology
Josiah's PT appointment, yesterday, was another success. He met D with huge smiles. He was happy to demonstrate his tricks for her, again. He recognizes certain things as being 'work', thus is more apt to complain during the session. He is making huge strides every week. We need to continue to work on his head control. His arms/legs are making significant improvements each week. It's fun to watch him accomplish new goals.
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Josiah had his cardiology appointment this morning. As planned, I woke him early to nurse him. Then, I offered him a bottle of high-calorie formula. He drank 2 oz before it was time to leave.
He slept on the way to the MD. He was in a good mood upon arrival. After the usual check in and EKG, they brought the scale in. 11lbs 2oz. I had estimated an 'ideal' weight of 11lbs 4.5oz for this a.m. We were only 2.5oz off....I'm elated! It was so much better than I feared.
The cardiologist is wonderful and he is thrilled with Josiah's progress. Josiah's heart is no longer a concern. Josiah doesn't need to be seen again for six months. The appointments are backing off....a sure sign of improvement. We are so thankful.
Meanwhile, today is day 4 of my new no-smoking campaign. I'm shocked by how easy this has been. I've known, for a long time, that I was ready to quit. I knew "cutting down" would never work for me. I knew it would be an "all or nothing" approach. This has played out well. I have no physical cravings. I have 2 or 3 "psychological/behavioral" cravings per day. They only last mere moments; I am able to easily redirect myself. After 27 yrs of smoking, believing it was going to be this easy would have seemed delusional. I am so thankful for the reality.
Tomorrow, we will join a new group of friends (all of whom are blessed with a child with DS), for an Easter Egg hunt & lunch. The siblings are all coming too. I'm really looking forward to meeting our new friends.
Sunday, family is coming here to celebrate Easter. I remain in awe of the miracles that have blessed my family. I remain thankful.....to so many.....for so much <3
Friday, March 2, 2012
Exasperated!!!
We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery. His EKG was great! Then, they weighed him. He weighed in at 9lbs 1.3oz. At best, given that each office has it's own scale, he neither gained nor lost weight. At worst, he lost 2oz since last Friday (at the pediatrician's office). I cannot begin to describe the feeling of complete exasperation, frustration, and despair.
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At Jesse's four-month check up, he weighed 15lbs. James, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3
Perhaps it seems like a small thing; perhaps it is. All I know is this: Josiah weighed 7lbs on 10/12/2011. Today, 3/2/12, he weighed 9lbs 1oz. He will be five months old, in ten days. At Jesse's four-month check up, he weighed 15lbs. James, at the same check up, weighed 13lbs. I know the DS plays a role in the slow weight gain, but this isn't right.
We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain. That excuse can no longer be used. Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate). Is it the Down Syndrome? Is it a feeding issue? Is he not getting enough calories? Does he simply need more calories than an average child? Should we start feeding him cereal? UGH! The questions race through my tired mind.
The surgeon was very pleased with the outcome of Josiah's surgery. Josiah's heart "sounds perfect." His color is good. "He looks like a different kid." "He looks more mature in the way he's moving around." However, "I expected him to come in here having gained a lot of weight so this is disappointing." (Yeah, tell me about it!)
Up until now, Josiah has been exclusively breastfed. He doesn't like the bottle; he won't drink from a bottle. Since surgery, he's been eating every 2-3 hours. It seems impossible to me that the child has gained no weight but numbers do not lie. I don't know what to do....that's the feeling. I hate that feeling. I'm tired and feel I has so little left to give....
We made our way out of the cardiologists office. I immediately walked down the hall to the pediatrician's office. I talked to our favorite nurse M. I voiced my frustration. I asked if we should start Josiah on cereal. I assured her we were doing everything we could to properly nourish our son. She already knows that we are. She said she'd call me later.
We did a few errands, picked up Jesse from school, and made our way home. I was exhausted. I left a message for our EI worker K. I know I'll hear from her as soon as she's available. This afternoon I fed Josiah...off and on....like usual. I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one. It's worth a try.
I talked to M from the pedi's office. The MD said we can start Josiah on cereal. I needed more than that. I didn't know what I needed, but that wasn't enough. I guess I wanted an instant fix.... I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information. I ended the call for lack of knowing what else to say. Carl was very supportive of my frustration level. He called the MD's office back again and spoke with our pediatrician. The pedi is sympathetic to the situation and understands the frustration level. He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such. We'll see the pediatrician next Thursday for another weight check.
I called the lactation specialist KF and heard back from her promptly. We chatted for some time. It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight. She offered some great suggestions. One by one, I'll try them all.
I talked to K for quite some time after. She is another fantastic support. K will put in a referral for OT early next week. It will be, specifically, for feeding. I've entrusted that task to her. We'll see K on Monday and will discuss the details further.
Tomorrow, I'll email A from the DS clinic. I'll explain what's going on with Josiah. I'll ask her what I need to do to initiate a consult with one of their nutritionists. I'll probably hear back from her on Monday.
It's the weekend now....two days, at home, with my wonderful family. I'm going to try to relax a little. I'll attempt some of the new suggestions given to me. Hopefully something will work. I'm going to try to not let it become all-consuming (although it already feels that way sometimes).
In the end, everything will work out. Even the cardiologist said "this is just another little hurdle we have to climb over." Everything will work out.
Climbing up the down staircase isn't always easy....but it's worth every single step <3
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.....
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
Friday, January 27, 2012
48 Hours Post Surgery
Josiah's progress continues to be remarkable :)
Josiah slept until almost 9am. Upon waking up, his central line was removed, he got a chest x-ray, and nursed again. He is such an amazing little man. The chest x-ray results were wonderful.....everything looks great! He was quickly transferred out of ICU and into the regular cardiac unit.
The surgeon (Dr. E) stopped by and marveled at how well Josiah is doing. He would like Josiah to have another sedated echo cardiogram to confirm that everything is well (which they believe to be true). The nurse practitioner scheduled one for Monday morning, but the surgeon is saying that we will likely be discharged home before Monday a.m. - OMG, what great news!!!! That will simply require a trip back later next week for the echo (as an outpatient). I couldn't be more thrilled.
The cardiologist (Dr. P) stopped by and, also, marveled at how well Josiah is doing. He, too, suggested we should be discharged home over the weekend. We talked about the surgery success. As we had already been told, Josiah's VSD was larger than expected. He also had 5-6 ASD's. All holes were successfully repaired. Josiah also had a leaky valve, which we hadn't been told (it matters not, really). That, too, was repaired successfully. The cardiologist listened to Josiah's heart and chuckled stating, "He sounds great; you would never know that he used to have heart disease." Those are words a mother loves to hear :)
Josiah's is just now getting a Synagis shot. When I was first told that he was going to get one, I questioned it as Josiah had his first Synagis shot last week and is not due again until mid-February. Then I learned something new. Synagis is wiped out with bypass. Therefore, he hasn't had any in his system since Wednesday. Who knew??? LOL. We'll update the Synagis schedule with the pedi, and he will get his last two doses there. The cardiologist said it isn't necessary as "Josiah is no longer a high-risk baby." (Again, great words to hear). But, since he just had surgery, the cardiologist agreed to smart to follow-through with the next two doses to cover the 6-8 weeks post-op.
Carl stayed home with the older boys today (ages 2 & 5). They were picked up from my parents house last night. I think the boys were happy to be home because neither of them got out of bed until 1pm today LOL!!! I miss the boys. I miss Carl. I miss my sister (who also lives with us). I'm looking forward to bringing Josiah home. I miss home <3
It's time to feed Josiah. Then it's time to feed Mama :)
More updates to come <3
Josiah slept until almost 9am. Upon waking up, his central line was removed, he got a chest x-ray, and nursed again. He is such an amazing little man. The chest x-ray results were wonderful.....everything looks great! He was quickly transferred out of ICU and into the regular cardiac unit.
The surgeon (Dr. E) stopped by and marveled at how well Josiah is doing. He would like Josiah to have another sedated echo cardiogram to confirm that everything is well (which they believe to be true). The nurse practitioner scheduled one for Monday morning, but the surgeon is saying that we will likely be discharged home before Monday a.m. - OMG, what great news!!!! That will simply require a trip back later next week for the echo (as an outpatient). I couldn't be more thrilled.
The cardiologist (Dr. P) stopped by and, also, marveled at how well Josiah is doing. He, too, suggested we should be discharged home over the weekend. We talked about the surgery success. As we had already been told, Josiah's VSD was larger than expected. He also had 5-6 ASD's. All holes were successfully repaired. Josiah also had a leaky valve, which we hadn't been told (it matters not, really). That, too, was repaired successfully. The cardiologist listened to Josiah's heart and chuckled stating, "He sounds great; you would never know that he used to have heart disease." Those are words a mother loves to hear :)
Josiah's is just now getting a Synagis shot. When I was first told that he was going to get one, I questioned it as Josiah had his first Synagis shot last week and is not due again until mid-February. Then I learned something new. Synagis is wiped out with bypass. Therefore, he hasn't had any in his system since Wednesday. Who knew??? LOL. We'll update the Synagis schedule with the pedi, and he will get his last two doses there. The cardiologist said it isn't necessary as "Josiah is no longer a high-risk baby." (Again, great words to hear). But, since he just had surgery, the cardiologist agreed to smart to follow-through with the next two doses to cover the 6-8 weeks post-op.
Carl stayed home with the older boys today (ages 2 & 5). They were picked up from my parents house last night. I think the boys were happy to be home because neither of them got out of bed until 1pm today LOL!!! I miss the boys. I miss Carl. I miss my sister (who also lives with us). I'm looking forward to bringing Josiah home. I miss home <3
It's time to feed Josiah. Then it's time to feed Mama :)
More updates to come <3
Wednesday, January 18, 2012
Sedated echo & the wait for surgery
We were up at 4:15 this morning. I had to be sure that Josiah was able to nurse before the 5:30 cut-off time. Mission accomplished. My goodness was he full of smiles this a.m. We were out the door at 6:15 with the hopes of beating the morning commuters. Mission semi-accomplished.
We arrived at 8:30, parked, got a snack, and checked-in at 9am. We met with the RN responsible for the sedation, the cardiologist, and a few people in between. At 9:50, Josiah received the medication to help him sleep. He was not a happy baby. At 10:20, they began the echo cardiogram. They finished at 12 noon.
When the cardiologist walked in, I had high hopes that he'd tell us there was great improvement. Unfortunately, that was not the case. Josiah's heart remains enlarged on the right side. There continues to be a great deal of pressure within the right lung. These had not been a result of the virus. They are caused by something else.
Repairing the holes in Josiah's heart now becomes priority. They will fix both the VSD and multiple ASD's. Unlike the previous time frame of "within three months," it is now "within a month." The MD said the VSD and ASD's are common (particularly in Trisomy 21), the enlarged heart and increased lung pressure are uncommon in a child this young. This may be indicative of hypersensitive lungs. It may be a result of the holes in Josiah's heart. If that's the case, surgery would demonstrate improvement. If not, the search for answers start again.
In the meanwhile, we try not to get too far ahead of ourselves. We wait for surgery to call with an appointment for pre-op and surgery itself. We plan from there. Carl & I will take turns staying with Josiah in the hospital, at least for the first few days. Josiah will initially be on a ventilator and breastfeeding will be impossible. So, I will pump & wait until he can feed again. Thereafter, I'll stay with him to nurse him as he is able. He'll likely be in the hospital for 4-7 days, but it could be longer. We pray for fast, easy recovery.
At 12:30pm, we took Josiah down for his chest x-ray....just more data for the MD's to consider.
We were pulling out of the parking spot at 1:30pm for the one hour ride home.
The pediatrician's office called while we were driving home. Josiah's Synagis arrived today. We'll bring him to the pedi tomorrow for his first shot, but not before bringing he & James to playgroup - a bright spot in the week :)
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...Wow! What a ride!" Melvin Trotter 1924-2006.
We arrived at 8:30, parked, got a snack, and checked-in at 9am. We met with the RN responsible for the sedation, the cardiologist, and a few people in between. At 9:50, Josiah received the medication to help him sleep. He was not a happy baby. At 10:20, they began the echo cardiogram. They finished at 12 noon.
When the cardiologist walked in, I had high hopes that he'd tell us there was great improvement. Unfortunately, that was not the case. Josiah's heart remains enlarged on the right side. There continues to be a great deal of pressure within the right lung. These had not been a result of the virus. They are caused by something else.
Repairing the holes in Josiah's heart now becomes priority. They will fix both the VSD and multiple ASD's. Unlike the previous time frame of "within three months," it is now "within a month." The MD said the VSD and ASD's are common (particularly in Trisomy 21), the enlarged heart and increased lung pressure are uncommon in a child this young. This may be indicative of hypersensitive lungs. It may be a result of the holes in Josiah's heart. If that's the case, surgery would demonstrate improvement. If not, the search for answers start again.
In the meanwhile, we try not to get too far ahead of ourselves. We wait for surgery to call with an appointment for pre-op and surgery itself. We plan from there. Carl & I will take turns staying with Josiah in the hospital, at least for the first few days. Josiah will initially be on a ventilator and breastfeeding will be impossible. So, I will pump & wait until he can feed again. Thereafter, I'll stay with him to nurse him as he is able. He'll likely be in the hospital for 4-7 days, but it could be longer. We pray for fast, easy recovery.
At 12:30pm, we took Josiah down for his chest x-ray....just more data for the MD's to consider.
We were pulling out of the parking spot at 1:30pm for the one hour ride home.
The pediatrician's office called while we were driving home. Josiah's Synagis arrived today. We'll bring him to the pedi tomorrow for his first shot, but not before bringing he & James to playgroup - a bright spot in the week :)
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming...Wow! What a ride!" Melvin Trotter 1924-2006.
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
Sunday, January 8, 2012
Cardiology with unexpected results
Yesterday, I brought Josiah to the cardiologist for a routine evaluation.
At 12 wks gestation, we learned that Josiah had a hole in his heart (ventricular septal defect (VSD)). At wk 18 gestation, we were told that the hole had closed on it's own. Just to be sure, we made an appt at an Advanced Fetal Care Center. There, they performed another ultrasound and confirmed that no holes were present. We were thrilled.
At birth, a heart murmur was detected but was gone the next day.
Approximately 3 wks ago, the pediatrician detected the heart murmur again. He referred us to the cardiology clinic affiliated with the Children's Hospital. Given the previous ultrasounds and EKG's (which all looked good), we were not concerned.
As a side note, Josiah developed a respiratory infection about 10 days ago. He was subsequently admitted to the Children's Hospital for one night. There is an assumption of RSV, though he was never formally tested.
Yesterday, I took Josiah to his scheduled appointment with the cardiologist. The MD noted the rapid breathing and chest congestion, not surprising given the respiratory infection. They performed an echo cardiogram. The MD read the results, came in, asked me a few questions.......then the three pieces of news.
1. The original hole (VSD) in Josiah's heart never fully closed. They are able to see how large it was, the portion that his own tissue covered, and the hole that still remains. I am told this is mild-moderate in size.
2. Josiah also has an atrial septal defect (ASD). I am told this is mild-moderate in size.
3. Most concerning, the right side of Josiah's heart is quite enlarged. The right side of the heart is the side responsible for pumping air to the lungs. It is hoped that his heart has been working harder due to the respiratory infection. If that proves true, the heart should decrease in size once the infection clears up.
The positives: Josiah has not fever, is eating well, sleeping well, and not sweating during feeds. His oxygenation level is good (avg 97/98) and blood pressure is good.
Teary-eyed, I went to the pediatrician immediately afterwards. Josiah was given a nebulizer treatment in the office, which seemed to improve his airflow. We were given a nebulizer to bring home. We will use this three times per day for the next ten days.
We have a follow up early next week with the pediatrician.
We have a follow up appointment scheduled at the Children's Hospital in two weeks. They will perform another echo cardiogram and compare the two. We are keeping our fingers crossed that a marked improvement will be evident.
At 12 wks gestation, we learned that Josiah had a hole in his heart (ventricular septal defect (VSD)). At wk 18 gestation, we were told that the hole had closed on it's own. Just to be sure, we made an appt at an Advanced Fetal Care Center. There, they performed another ultrasound and confirmed that no holes were present. We were thrilled.
At birth, a heart murmur was detected but was gone the next day.
Approximately 3 wks ago, the pediatrician detected the heart murmur again. He referred us to the cardiology clinic affiliated with the Children's Hospital. Given the previous ultrasounds and EKG's (which all looked good), we were not concerned.
As a side note, Josiah developed a respiratory infection about 10 days ago. He was subsequently admitted to the Children's Hospital for one night. There is an assumption of RSV, though he was never formally tested.
Yesterday, I took Josiah to his scheduled appointment with the cardiologist. The MD noted the rapid breathing and chest congestion, not surprising given the respiratory infection. They performed an echo cardiogram. The MD read the results, came in, asked me a few questions.......then the three pieces of news.
1. The original hole (VSD) in Josiah's heart never fully closed. They are able to see how large it was, the portion that his own tissue covered, and the hole that still remains. I am told this is mild-moderate in size.
2. Josiah also has an atrial septal defect (ASD). I am told this is mild-moderate in size.
3. Most concerning, the right side of Josiah's heart is quite enlarged. The right side of the heart is the side responsible for pumping air to the lungs. It is hoped that his heart has been working harder due to the respiratory infection. If that proves true, the heart should decrease in size once the infection clears up.
The positives: Josiah has not fever, is eating well, sleeping well, and not sweating during feeds. His oxygenation level is good (avg 97/98) and blood pressure is good.
Teary-eyed, I went to the pediatrician immediately afterwards. Josiah was given a nebulizer treatment in the office, which seemed to improve his airflow. We were given a nebulizer to bring home. We will use this three times per day for the next ten days.
We have a follow up early next week with the pediatrician.
We have a follow up appointment scheduled at the Children's Hospital in two weeks. They will perform another echo cardiogram and compare the two. We are keeping our fingers crossed that a marked improvement will be evident.
Friday, December 23, 2011
MD visit and PT introduction
The last couple of weeks have been busy as we prepare for Christmas. We completed our shopping tonight (we think). Tomorrow is dedicated to baking desserts, then wrapping gifts. Saturday is our annual Christmas Eve celebration with family, then xmas day :) I said to Carl the other day, "Isn't there something magical about watching Christmas through the eyes of a child." He agreed.
Josiah went to the MD on Tuesday for his official 2-month check up. On our last appt (11/17), he weighed 7.10oz. Tuesday, he weighed 9.14oz. That's a 20oz weight gain in about 4 weeks. The MD actually said he was "pleased" with the weight gain (we laughed previously as he's a bit of an alarmist, at times). He's gaining sufficiently and he's primarily breastfed. That's great news.
The MD did detect a heart murmur. We're not really concerned about it. While pregnant, they discovered that Josiah had a hole in his heart (a VSD). Matter-of-fact, that was one of the first "red flags" to the DS. A few weeks later, the hole had disappeared. Just to be certain, we made an appt at the advanced fetal care center @ the Children's Hospital. They spent about 2 hours examining Josiah's heart (in-utero). They confirmed the absence of a hole. They said that a tiny pinhole could still be possible, even though they couldn't see one. The continued by saying that pinholes generally cause no problems and, more often than not, close over time. The day Josiah was born, they detected a heart murmur. However, 2 days later (upon discharge) the murmur was seemingly gone. This was the first time the murmur could be heard again, since his birth. We immediately connected with a cardiologist at Children's. Josiah has an appt in January with cardiology. We're already relieved due to the extensive examination he had while inutero. We believe it can be no more than a pinhole. It's just one more professional to be included on our growing team :)
On Wednesday, the EI PT came out to see Josiah. She's confirmed he definitely has low tone, but primarily in the neck & trunk. His arms and legs are good. So, she will see him monthly (for now). The EI worker will start seeing him weekly and, she too, will work to improve his muscle tone. PT has assured us that she can increase to weekly visits, if they become warranted. Josiah is a strong little boy....he'll get there :)
We are so blessed to have the team of professionals we have. We love each and every one of them. This is an amazing journey. Next month we'll meet the cardiologist & schedule Josiah's new baby visit at the DS clinic. In the meanwhile, xmas is in three days....a four year old, a two year old, and 10-week old Josiah - it doesn't get any better than this.
Happy Holidays to all!
Josiah went to the MD on Tuesday for his official 2-month check up. On our last appt (11/17), he weighed 7.10oz. Tuesday, he weighed 9.14oz. That's a 20oz weight gain in about 4 weeks. The MD actually said he was "pleased" with the weight gain (we laughed previously as he's a bit of an alarmist, at times). He's gaining sufficiently and he's primarily breastfed. That's great news.
The MD did detect a heart murmur. We're not really concerned about it. While pregnant, they discovered that Josiah had a hole in his heart (a VSD). Matter-of-fact, that was one of the first "red flags" to the DS. A few weeks later, the hole had disappeared. Just to be certain, we made an appt at the advanced fetal care center @ the Children's Hospital. They spent about 2 hours examining Josiah's heart (in-utero). They confirmed the absence of a hole. They said that a tiny pinhole could still be possible, even though they couldn't see one. The continued by saying that pinholes generally cause no problems and, more often than not, close over time. The day Josiah was born, they detected a heart murmur. However, 2 days later (upon discharge) the murmur was seemingly gone. This was the first time the murmur could be heard again, since his birth. We immediately connected with a cardiologist at Children's. Josiah has an appt in January with cardiology. We're already relieved due to the extensive examination he had while inutero. We believe it can be no more than a pinhole. It's just one more professional to be included on our growing team :)
On Wednesday, the EI PT came out to see Josiah. She's confirmed he definitely has low tone, but primarily in the neck & trunk. His arms and legs are good. So, she will see him monthly (for now). The EI worker will start seeing him weekly and, she too, will work to improve his muscle tone. PT has assured us that she can increase to weekly visits, if they become warranted. Josiah is a strong little boy....he'll get there :)
We are so blessed to have the team of professionals we have. We love each and every one of them. This is an amazing journey. Next month we'll meet the cardiologist & schedule Josiah's new baby visit at the DS clinic. In the meanwhile, xmas is in three days....a four year old, a two year old, and 10-week old Josiah - it doesn't get any better than this.
Happy Holidays to all!
Subscribe to:
Posts (Atom)