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
Welcome. I was inspired to write this blog while pregnant with my son, Josiah. At 18 weeks gestation, Josiah was diagnosed with Down Syndrome. He had open heart surgery at 3 months and has had RSV twice. He is now 21 months old. He and his two older brothers amaze us everyday. Josiah was not a mistake, nor is he a regret. He is a miracle and the light of our lives. We share with you this beautiful life we have been blessed with.
Showing posts with label EKG. Show all posts
Showing posts with label EKG. Show all posts
Thursday, February 2, 2012
Today's Follow-up Appt at Children's
Labels:
brother,
cardiologist,
Children's Hospital,
down syndrome,
DS,
EKG,
enlarged heart,
guardian angel,
lasix,
MD,
OHS,
open heart surgery,
playgroup,
sedated echo,
Trisomy 21,
weight
Saturday, January 28, 2012
72 Hours Post Surgery
Josiah had another great night. He woke up twice for feedings (1am & 4:30am). In addition to overnight feeds, he got another EKG, was weighed (4.19k), had a sponge bath, and his oxygen was removed. After his busy night, he slept until 9am.
I am amazed by this little boy. He looks incredible. He is alert; his eyes are bright. He somehow appears stronger.
This morning, I was able to take him for a walk to radiology where he received a chest x-ray. He did very well. Then, he accompanied Mama down to the cafeteria for breakfast. Afterwards, he had labs drawn and his pacing wires were removed. Nothing is left except the simple heart and oxygenation monitors.
Carl came to visit today. Josiah was happy to see Daddy. At 2:30pm, we took Josiah for another walk to the cafeteria for lunch. Josiah enjoyed the change of scenery. He fell asleep on the way back to the room.
Josiah has continued to eat well, which makes this Mama very happy.
Josiah is sleeping now. Carl will be leaving for home soon. I want to go home. I want to take Josiah home. I'm growing frustrated. I miss the boys. I can't wait to go home <3
I am amazed by this little boy. He looks incredible. He is alert; his eyes are bright. He somehow appears stronger.
This morning, I was able to take him for a walk to radiology where he received a chest x-ray. He did very well. Then, he accompanied Mama down to the cafeteria for breakfast. Afterwards, he had labs drawn and his pacing wires were removed. Nothing is left except the simple heart and oxygenation monitors.
Carl came to visit today. Josiah was happy to see Daddy. At 2:30pm, we took Josiah for another walk to the cafeteria for lunch. Josiah enjoyed the change of scenery. He fell asleep on the way back to the room.
Josiah has continued to eat well, which makes this Mama very happy.
Josiah is sleeping now. Carl will be leaving for home soon. I want to go home. I want to take Josiah home. I'm growing frustrated. I miss the boys. I can't wait to go home <3
Labels:
Children's Hospital,
down syndrome,
DS,
EKG,
OHS,
open heart surgery,
Trisomy 21
Tuesday, January 24, 2012
The Day Before Surgery
We took Josiah for pre-op testing today. He had an EKG and labs, which all came back normal (a big relief). His weight had dropped from 9.3 lbs to 8.7 lbs since Friday....that was frustrating to hear. Given that he's been on Lasix since Friday, the medical staff was not surprised by the weight loss.
We spoke with a member of the anesthesiology and surgery departments. Releases were signed. We were given a tour of ICU, Josiah's first stop after surgery. We can bring a computer, as long as we don't plug it in (Wow! I guess I'll be leaving the computer at home LOL). We can have a drink in Josiah's room, as long as it has a cover on it. We can eat, as long as it's in the family room. We can have our cell phone, as long as we're in the hallway outside of the unit. Ok, looks like this stay won't be quite as comfortable as I had hoped. The priority is Josiah so it matters not. Sometimes, a little extra comfort just helps. Oh well.
We were home by 2pm, which was nice. We all took a nap. I checked in with my folks; the boys are doing well. We've cleaned up the house a bit. I'm not planning on getting a lot of sleep tonight. It's 10:43pm now. We still have to pack for Josiah (and us). Josiah needs a bath. And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time. We're leaving the house at 5am to assure the 7am check-in time. Traffic can be horrible, even that early.
It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours. It's hard knowing that they will stop his little heart from beating, in order to fix it. It's hard knowing that he will have tubes, and breathing machines, and goodness knows what! I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%). It's hard knowing that he will be in pain. On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.
God, please take care of my son!
Josiah, be strong my littlest angel <3
We spoke with a member of the anesthesiology and surgery departments. Releases were signed. We were given a tour of ICU, Josiah's first stop after surgery. We can bring a computer, as long as we don't plug it in (Wow! I guess I'll be leaving the computer at home LOL). We can have a drink in Josiah's room, as long as it has a cover on it. We can eat, as long as it's in the family room. We can have our cell phone, as long as we're in the hallway outside of the unit. Ok, looks like this stay won't be quite as comfortable as I had hoped. The priority is Josiah so it matters not. Sometimes, a little extra comfort just helps. Oh well.
We were home by 2pm, which was nice. We all took a nap. I checked in with my folks; the boys are doing well. We've cleaned up the house a bit. I'm not planning on getting a lot of sleep tonight. It's 10:43pm now. We still have to pack for Josiah (and us). Josiah needs a bath. And, finally, I need to feed him at 2am to allow him to eat before his 3am cut-off time. We're leaving the house at 5am to assure the 7am check-in time. Traffic can be horrible, even that early.
It's hard to imaging handing my 3 month old baby, and all the control, to a surgeon in a few hours. It's hard knowing that they will stop his little heart from beating, in order to fix it. It's hard knowing that he will have tubes, and breathing machines, and goodness knows what! I just keep reminding myself that it's become a fairly common procedure, and success rates are very high (98-99%). It's hard knowing that he will be in pain. On the other hand, I am grateful that he is too young to know, too young to be afraid, and too young to remember.
God, please take care of my son!
Josiah, be strong my littlest angel <3
Labels:
anesthesiology,
Children's Hospital,
down syndrome,
DS,
EKG,
lasix,
OHS,
open heart surgery,
pre-op,
surgery,
Trisomy 21,
weight
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.
“Fear can keep us up all night long, but faith makes one fine pillow.” - author unknown
Labels:
ASD,
cardiologist,
Children's Hospital,
down syndrome,
DS,
echo cardiogram,
EKG,
enlarged heart,
heart defect,
heart murmur,
MD,
respiratory infection,
Trisomy 21,
VSD
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