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 enlarged heart. Show all posts
Showing posts with label enlarged heart. Show all posts
Saturday, May 4, 2013
Tuesday, June 5, 2012
Friday's Facts 060112: A New Parent's Checklist
This is a great checklist I found for new parents of a child with Down Syndrome. It was written for parents living in the Pennsylvania area but has been edited, here, for people living in the Massachusetts area.
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
Newborn checklist
1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).
2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.
3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.
4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org. EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age. EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs. Families with low to moderate income and limited resources may be eligible for SSI. Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth. Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.
6. Take a copy of the following to your pediatrician:
1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
2. Contact info for the DS Clinic at BCH or MG
3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)
3-month checklist
1. Schedule an echocardiogram with a pediatric cardiologist.
Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.
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, 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
Monday, January 9, 2012
Pedi follow-up
We took Josiah to the pediatrician today.
The pedi had already read the report from last Friday. We discussed the results (VSD, ASD, and enlarged heart) and upcoming appointment at the Children's Hospital.
Josiah is doing so much better since Friday. His color is good. He's alert and full of smiles. His respiration's are good, heart rate is good, and oxygenation level good (97). These are all good signs.
The pedi was concerned that for three weeks, Josiah had no weight gain. So, for fun, he tossed Josiah on the scale. The little man has gained 4 oz since Friday....another good sign.
No follow-ups with the pedi are needed, unless we have concerns.
Upcoming appt at Children's will give us more info.
EI PT returns this week to work with Josiah.
I'm so glad my beautiful boy is feeling better.
This is an amazing adventure :)
The pedi had already read the report from last Friday. We discussed the results (VSD, ASD, and enlarged heart) and upcoming appointment at the Children's Hospital.
Josiah is doing so much better since Friday. His color is good. He's alert and full of smiles. His respiration's are good, heart rate is good, and oxygenation level good (97). These are all good signs.
The pedi was concerned that for three weeks, Josiah had no weight gain. So, for fun, he tossed Josiah on the scale. The little man has gained 4 oz since Friday....another good sign.
No follow-ups with the pedi are needed, unless we have concerns.
Upcoming appt at Children's will give us more info.
EI PT returns this week to work with Josiah.
I'm so glad my beautiful boy is feeling better.
This is an amazing adventure :)
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.
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