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 ASD. Show all posts
Showing posts with label ASD. Show all posts
Saturday, May 4, 2013
Friday, January 25, 2013
An Important Anniversary
One year ago, today, was a very important day. January 25, 2012. Josiah's rebirth...the day his broken heart was fixed.
Here is the much anticipated scar that I so feared. I remember hoping that as he grew, others wouldn't make fun of him for this scar.
Last year, we had learned of the many holes that were wreaking havoc in Josiah's heart. We learned about his pulmonary hypertension (caused by the holes). Josiah had undergone several tests and open heart surgery was necessary. We had received the call on Friday, Jan 20th...pre-op Tuesday, open heart surgery on Wednesday. Tuesday's pre-op happened without incident. Wednesday, January 25th, was a long day.
It started at 1:30am - we woke Josiah for his pre-surgery bath. As I undressed him, I knew that his chest would never look the same again. I remember feeling "he will be scarred for life." It's not a good feeling for a Mom to have. I took this picture of my little man. He weighed 8lbs 7oz. He was a mere 3.5 months old.
It was the most anal bath, I had ever dealt with. We had been sent home with a bath sponge, soap, and directions. It was important that we followed instructions as it would decrease the chance of infection. We followed directions to a tee.
At 2:00am, I was nursing him - we had a 3:00am cut-off time. I wanted to be sure he had one last feeding before we left for the hospital. Josiah ate and napped.
At 5:00am, we left for Children's, arriving at 6:15. We were checked in by 6:45 and taken to pre-op. At 7:50, Nurse Tom would do something very special. He allowed us our hugs/kisses, wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, then CARRIED our little angel to the operating room.
At noon, we were meeting with the surgeon. Josiah had successfully undergone open-heart surgery. He was a little miracle.
Josiah was in CICU immediately following the surgery. There were tubes, machines, and the like. Here are the pics I took of him there:
It's difficult to convey 'what I felt' then. By reading my own blog, the memories come right back. I remember things that had since been forgotten...the details...the little moments. The play-back of time.
Suffice it to say, Josiah did amazingly well. Here is a picture of him taken two days after surgery. It was January 27th. Most of the tubes had been removed. He was out of the CICU. Recovery was amazing!!!
On January 29th, I wrote the following in my blog:
"Josiah woke at 1am for a weight check and feeding. He's weighing in at 3.14k (down from 3.15 the night before). Then he slept until 7am. We woke to confirmation of today's planned discharge. Carl is coming at 3pm to take us home.
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate."
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate."
This is a picture I took last night January 24th, 2013. It is the one year later pic :). It's hard to tell he even had surgery. It is amazing!
And, this is Josiah - one year later. Happy Anniversary, my little heart hero :)
Current age: 15months
Current weight: 20lbs 12oz
Current height: 30.5 inches
Cute factor: 10
...forever grateful for the miracles in my life...
Saturday, July 14, 2012
Friday's Facts 062212: Down Syndrome and Autism
Recent years have shown an increase in the number of children who are dually diagnosed: Down Syndrome (DS) AND autism. In short, these are children who have BOTH.
It is not easy to diagnose autism; There is no blood test, genetic marker, or facial feature to aid in diagnosis. It is a subjective opinion. The diagnosis is still harder in children who already have a 'learning disability' such as DS. There is also not clear agreement on the number of children who are affected by both.
Surveys in the UK and Sweden suggest approximately 5-7% of children with DS have autistic spectrum disorder, or autism. A recent study in the US suggests 2 in 20 (10%).
Some studies have suggested a family history of autism was present in the families of some of the children dually diagnosed. Like other children, they are affected by a genetic predisposition in their families.
Some studies suggest that many dually diagnosed children have serious health problems that do not affect all children with DS. There may be an increased risk for autism for those children with DS who have experienced: infantile spasms, epilepsy, brain injury after complicated heart surgery, severe hearing or visual impairments, and persistent infections.
The diagnosis and treatment of autism is more critical those for DS. Without early detection and intervention, the lives of children with autism may be much more limited than those with DS. The key area affected developmentally in the DS child is cognitive. For the autistic child, it is social and emotional.
Most babies show the least delay in social and emotional development, smiling when talked to at 2 months, smiling spontaneously at 3 months, etc. Each milestone showing a 1-month delay (on average). So, the key area to watch for in a child with DS suspected of having a complicated behavior disorder such as autism is in the social/emotional development.
It is not easy to diagnose autism; There is no blood test, genetic marker, or facial feature to aid in diagnosis. It is a subjective opinion. The diagnosis is still harder in children who already have a 'learning disability' such as DS. There is also not clear agreement on the number of children who are affected by both.
Surveys in the UK and Sweden suggest approximately 5-7% of children with DS have autistic spectrum disorder, or autism. A recent study in the US suggests 2 in 20 (10%).
Some studies have suggested a family history of autism was present in the families of some of the children dually diagnosed. Like other children, they are affected by a genetic predisposition in their families.
Some studies suggest that many dually diagnosed children have serious health problems that do not affect all children with DS. There may be an increased risk for autism for those children with DS who have experienced: infantile spasms, epilepsy, brain injury after complicated heart surgery, severe hearing or visual impairments, and persistent infections.
The diagnosis and treatment of autism is more critical those for DS. Without early detection and intervention, the lives of children with autism may be much more limited than those with DS. The key area affected developmentally in the DS child is cognitive. For the autistic child, it is social and emotional.
Most babies show the least delay in social and emotional development, smiling when talked to at 2 months, smiling spontaneously at 3 months, etc. Each milestone showing a 1-month delay (on average). So, the key area to watch for in a child with DS suspected of having a complicated behavior disorder such as autism is in the social/emotional development.
Some key behaviors that may point to the possibility of autism in a child with Down syndrome are:
- Extreme Autistic Aloneness - The child does not relate to people normally and seems to prefer to be left alone. The child seems to consider other persons as objects, not people. He will not join in group play with other children. Unlike children with Down syndrome, who are very lovable and huggable, the autistic child does not want to be held.
- Anxiously obsessive desire for the preservation of sameness - Any differences in daily routines can cause a large upset.
- Lack of eye contact - Autistic persons typically do not make eye contact but will look away or "right through" other people.
- Shows repetitive, "Stereotypical" movement, like sitting for long periods of time with an object in his hand and just waving it back and forth looking at it.
Individuals with autism usually exhibit at least half of the traits listed below. These symptoms can range from mild to severe and vary in intensity from symptom to symptom. In addition, the behavior usually occurs across many different situations and is consistently inappropriate for their age.
- Difficulty in mixing with other children
- Insistence on sameness; resists changes in routine
- Inappropriate laughing and giggling
- No real fear of dangers
- Little or no eye contact
- Sustained odd play
- Apparent insensitivity to pain
- Echolalia (repeating words or phrases in place of normal language)
- Prefers to be alone; aloof manner
- May not want cuddling or act cuddly
- Spins objects
- Not responsive to verbal cues; acts as deaf
- Inappropriate attachment to objects
- Difficulty in expressing needs; uses gestures or pointing instead of words
- Noticeable physical overactivity or extreme underactivity
- Tantrums - displays extreme distress for no apparent reason
- Unresponsive to normal teaching methods
- Uneven gross/fine motor skills. (May not want to kick ball but can stack blocks.
Diagnosis of Autism in Down Syndrome - DSM-IV Checklist
Diagnosis of Autism in Down Syndrome - DSM-IV Checklist
- A total of six (or more) items from (1), (2), and (3), with at least two from (1) and one each from (2) and (3).
- Qualitative impairment in social interaction, as manifested by at least two of the following:
- Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
- Not normally seen in Down syndrome, more indicative of autism.
- Failure to develop peer relationships appropriate to developmental level.
- Not normally seen in Down syndrome, more indicative of autism.
- A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by lack of showing, bringing, or pointing out objects of interest).
- Somewhat true in Down syndrome but much more pronounced in autism.
- Lack of social or emotional reciprocity.
- Somewhat true in Down syndrome but much more pronounced in autism.
- Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
- Qualitative impairments in communication as manifested by at least one of the following:
- Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
- Not normally seen in Down syndrome.
- In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
- Normally seen in Down syndrome, although not to the extent seen in autism.
- Stereotyped and repetitive use of language or idiosyncratic language.
- Seen somewhat in Down syndrome but not to the extent seen in autism.
- Lack of varied, spontaneous make-believe play or social initiative play appropriate to developmental level.
- Not normally seen in Down syndrome.
- Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
- Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
- Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either in intensity or focus.
- Not normally seen in Down syndrome.
- Apparently inflexible adherence to specific, nonfunctional routines or rituals.
- Not normally seen in Down syndrome.
- Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole body movements).
- Not normally seen in Down syndrome.
- Persistent preoccupation with parts of objects.
- Not normally seen in Down syndrome.
- Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either in intensity or focus.
- Qualitative impairment in social interaction, as manifested by at least two of the following:
- Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) Social interaction, (2) Language as used in social communication, or (3) Symbolic or imaginative play.
- Children with Down syndrome will normally display some deficits in these traits depending on the severity of mental retardation. Since this is not entirely unexpected, it is usually ignored in the records and not so noted. Therefore when autism is diagnosed at a later age and the records or memory is searched for this evidence it is either not found in the official records of the child or it is forgotten about because it was not deemed all that unusual at the time. The diagnostician may then discard the possible diagnosis of autism because the appearance is given (falsely) that these traits were not present prior to 36 months of age. Because of this quirk in the diagnosis, there probably are many persons with Down syndrome with autism but it is not so diagnosed.
- The disturbance is not better counted for by Rett's Disorder or Childhood Disintegrative Disorder.
A Helpful site:
http://ds-asd-connection.org/Home.html
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 25, 2012
Surgery was a SUCCESS
Josiah got his bath at 1:30am. He got his last feeding from 2am-3am. Then, he napped. We left at 5am for the drive into Children's. We arrived at the hospital parking garage at 6:15am and were checked in by 6:45am. First stop, pre-op admitting. We were escorted to the pre-op holding area. Josiah was hungry by then. Luckily, he recently discovered his thumb which was successful at pacifying him :)
At 7:50am, members of the team arrived. Nurse Tom allowed us our hugs/kisses with Josiah then took him from me. He immediately voiced a fondness for our little man. Josiah was given an oral sedative and handled it like a trooper. Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile). Carl & I were escorted to the family waiting area.
The RN liaisons there are wonderful. They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us. At 9am, the surgeon came in to introduce himself and explain the procedure. The wait began.
The first call came around 10am. Josiah had handled anesthesia well. The incision had been made at 9:30am. He was transferred to a heart/lung machine at 10am. The transfer to machine went smoothly. Josiah was stable and doing very well. Carl & I walked around and tried to waste time. We made our way back to the waiting room at 11am. At 11:40, the second call came. The repairs to the heart had been successfully completed. He transferred smoothly off the heart/lung machine. They were about to finish the procedure. Josiah was stable and doing very well. What great news!
At 12 noon, Dr. E. came in to speak with us. The VSD was much larger than anyone predicted. It was partially covered by a valve which is likely why it fooled us early on. Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place. The ASDs were numerous (about 5-6) and were all closed successfully. They performed an echo cardiogram, which confirmed that repairs had been completed with great success. The elevated pressure in his heart immediately registered as normal :) Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!
He's being moved to ICU as I update this blog. Within the hour, we will be able to see Josiah again. We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break. Josiah is on a breathing tube - I know that will be the hardest thing to see. My heart is still leaping for joy that my little man has come through surgery without complication. His heart is whole and is beating on it's own.
Josiah should be able to be removed from the breathing tube later today or tomorrow morning. Then, he can start nursing again. Expected stay 5-7 days. We can't wait to bring him home. I already miss the older boys :)
I can't thank you all enough for your kind words of support and encouragement. We wouldn't have gotten through today without you! It's a beautiful journey and I'm glad you're able to share it with us.
Off to ICU....I can't wait to see Josiah <3
At 7:50am, members of the team arrived. Nurse Tom allowed us our hugs/kisses with Josiah then took him from me. He immediately voiced a fondness for our little man. Josiah was given an oral sedative and handled it like a trooper. Nurse Tom wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, and CARRIED him to the O.R. (that made me smile). Carl & I were escorted to the family waiting area.
The RN liaisons there are wonderful. They made us comfortable, assured us that updates would be provided, and stayed in constant contact with us. At 9am, the surgeon came in to introduce himself and explain the procedure. The wait began.
The first call came around 10am. Josiah had handled anesthesia well. The incision had been made at 9:30am. He was transferred to a heart/lung machine at 10am. The transfer to machine went smoothly. Josiah was stable and doing very well. Carl & I walked around and tried to waste time. We made our way back to the waiting room at 11am. At 11:40, the second call came. The repairs to the heart had been successfully completed. He transferred smoothly off the heart/lung machine. They were about to finish the procedure. Josiah was stable and doing very well. What great news!
At 12 noon, Dr. E. came in to speak with us. The VSD was much larger than anyone predicted. It was partially covered by a valve which is likely why it fooled us early on. Dr. E. was able to move the valve, repair the hole, and gently slide the valve back into place. The ASDs were numerous (about 5-6) and were all closed successfully. They performed an echo cardiogram, which confirmed that repairs had been completed with great success. The elevated pressure in his heart immediately registered as normal :) Josiah is "ahead of schedule" in terms of stability and recovery - what great news this is!
He's being moved to ICU as I update this blog. Within the hour, we will be able to see Josiah again. We're trying to prepare for that first glimpse....pure ecstasy and, perhaps, a little heart break. Josiah is on a breathing tube - I know that will be the hardest thing to see. My heart is still leaping for joy that my little man has come through surgery without complication. His heart is whole and is beating on it's own.
Josiah should be able to be removed from the breathing tube later today or tomorrow morning. Then, he can start nursing again. Expected stay 5-7 days. We can't wait to bring him home. I already miss the older boys :)
I can't thank you all enough for your kind words of support and encouragement. We wouldn't have gotten through today without you! It's a beautiful journey and I'm glad you're able to share it with us.
Off to ICU....I can't wait to see Josiah <3
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.
Subscribe to:
Posts (Atom)