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
Showing posts with label sedated echo. Show all posts
Showing posts with label sedated echo. Show all posts
Thursday, February 2, 2012
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 :)
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.
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