As Fall approached, our pediatrician's office worked steadfastly to get Josiah approved for Synagis shots this year. Their attempts were shot down. The MD appealed the decision. The whole process took until well-into October. Their effort, futile. The insurance company said that Josiah doesn't need them; he's not at-risk. Ok.....
As Christmas day came to an end, Josiah's cough became more pronounced. The three year old had had a cough for almost a month. They had both been diagnosed with an ear infection; both had resisted amoxycillin. They were both on their second round of antibiotics - a Saturday morning visit to the pediatrician, three days before Christmas, had proven that the first round was unsuccessful.
Late Tuesday night, I ventured into the attic searching for the two humidifiers I knew were stored there. I quickly found them and dragged them out of their hidden corners. Downstairs, I determined that only one was working. So, I had to choose - which kid gets the working one? Well, I rationalized, the three year old is getting better, and can take zarbees cough medicine (pure honey). So, Josiah won! The humidifier was set up in hopes that his cough would settle down.
During the next 48 hours, we listened to Josiah become more and more congested. Friday morning, I was well aware that the Holiday weekend loomed in front of us. We called the pediatrician and got a 2pm appointment. We figured, let's have the two youngest checked. As usual, we were there on time and ushered right into a room. The MD came in and made an immediate remark that Josiah didn't sound well.
The three year old was checked first and given a big thumbs up. His ear infection is on it's way out. Then, it was Josiah's turn. Lungs listened to - "they sound wet." That's not good. Ears checked - "that one looks awful!" Ugh! T-shirt pulled up - ribs retracting when breathing. Uh-oh! Did I mention that the Holiday weekend was looming? "He probably has RSV." "If it's not RSV, it's pneumonia." End result - head to Children's.
The MD called ahead so they would be expecting us. We hoped to drop the older boys off at their grandparents house - we were told not to waste the time. Three boys packed into the car, quick stop at the gas station, and we hit the road for Children's Hospital. Friday at 3pm, on a Holiday weekend, doesn't bode well for traveling (especially when there's a sense of urgency). We made it to the e.r. around 4:15pm. C dropped Josiah and I off, and headed home with the older boys.
E.R. visits always take a while. I was fairly certain we'd be staying overnight. It was only one year ago, on New Year's Eve weekend, we had made this same trip. Josiah had a suspected case of RSV and we were sent from pedi to e.r. Last year, Josiah was hospitalized. I anticipated the same.
I immediately stated that I wanted Josiah tested for RSV (they don't usually formally test because it doesn't change the actual treatment). The MD's were great and obliged. At 9pm, the MD entered the room, "Did you hear?" I replied, "Hear what?" MD, "You nailed it from the beginning. He has RSV." I asked, "Did you document that?" She smiled and simply said "Yes."
Luckily, they didn't feel that Josiah required hospitalization this time around. Josiah was discharged; C came back for us and we headed home at about 10pm.
He had a fever late that night; it responded well to Tylenol. His cough and congestion got worse; both now seem to be improving. It's New Year's Eve and we're home. We are thankful for the blessings in our life.
It upsets me that a faceless individual decided that our son isn't "at risk." Our son doesn't need the Synagis shots (which protect at-risk kids from RSV). I'm upset that our son has to go through the congestion, coughing, and fevers. I'm upset that he's been housebound due to my fear of him getting worse. I'm upset that he's sick. It's because of a faceless person and someone's bottom-line (ie money). So sad. After all, who needs synagis???
Showing posts with label synagis. Show all posts
Showing posts with label synagis. Show all posts
Monday, December 31, 2012
Saturday, March 24, 2012
A Break-Through in the Weight Gain Battle
Yesterday, Josiah woke at about 7am. I had not forgotten that he had an appointment at the pediatrician at 10:30am. He was due for his next (and final) Synagis shot for this season. The Synagis shot requires a weight check, as the dosage is dependent on weight. I nursed him and prayed for an 'acceptable' weight gain.
Jesse went to school. Carl and I packed up the other boys and headed to the pediatrician. We were there a few minutes early, and brought straight to a room. I tried to remain optimistic, but prepared for the disappointment that has defined so many weight checks before. I got Josiah undressed and carried him to the scale. The moment of truth had arrived.
I placed him on the scale. I was hoping to be excited about the results. Part of me was ready to burst into tears if the results were not as I hoped. When the scale locked in with his current weight, I was ELATED! 10lbs 6.5oz. He had gained 15oz in 15 days. It was the 'picture perfect' weight gain (1 oz per day). I carried him back to the room; I couldn't help but feel overwhelmed with joy!
Within minutes, I could hear the pediatrician walking towards the room, all the way pronouncing "15oz in 15 days." LOL. At last, it was not going to feel like a 'doom and gloom' visit. I finally felt as if we had broken through that barrier. I was thrilled. Carl was thrilled. The MD (and nurses) were thrilled! FINALLY! He received his shot, and we were done! We were homeward bound, without the overwhelming anxiety of visits past. Josiah doesn't need to be seen until next month, for his 6-month check up.
We were winning the weight battle. I am still nursing, primarily. Josiah is only receiving 1-2 supplemental bottles per day. Don't believe anyone who tells you that a special needs child cannot be breastfed!
K called while we at the pediatrician's office. She is coming out on Monday with one more member of this amazing team! I was able to, briefly, update her with the good news. She shared in our excitement.
I called KF during the late afternoon hour. I was delighted to share our news with her. She has truly been an amazing support throughout this weight gain battle. Last week, she told me that this has become 'personal' for her too. I cannot explain how touched I've been by the amazing supports we have in our life. I told KF that her undying support through my breastfeeding journey, has been invaluable. I don't think I would've continued the BF without her help.
I've learned over the years that the most important things in a person's life, are those worth fighting for. This up-the-down-staircase journey is not always easy. However, it's one of those battles worth fighting. I have amazing parents, an incredible brother, and the best sister-in-law in the world. I am blessed with a husband, who is my best friend. I have 3 amazing boys who teach me new things, everyday. Our family has that one extra chromosome which has introduced us to new friends, new supports, new information, new learning opportunities, and confirmed our belief that we are the luckiest people in the world.
Jesse went to school. Carl and I packed up the other boys and headed to the pediatrician. We were there a few minutes early, and brought straight to a room. I tried to remain optimistic, but prepared for the disappointment that has defined so many weight checks before. I got Josiah undressed and carried him to the scale. The moment of truth had arrived.
I placed him on the scale. I was hoping to be excited about the results. Part of me was ready to burst into tears if the results were not as I hoped. When the scale locked in with his current weight, I was ELATED! 10lbs 6.5oz. He had gained 15oz in 15 days. It was the 'picture perfect' weight gain (1 oz per day). I carried him back to the room; I couldn't help but feel overwhelmed with joy!
Within minutes, I could hear the pediatrician walking towards the room, all the way pronouncing "15oz in 15 days." LOL. At last, it was not going to feel like a 'doom and gloom' visit. I finally felt as if we had broken through that barrier. I was thrilled. Carl was thrilled. The MD (and nurses) were thrilled! FINALLY! He received his shot, and we were done! We were homeward bound, without the overwhelming anxiety of visits past. Josiah doesn't need to be seen until next month, for his 6-month check up.
We were winning the weight battle. I am still nursing, primarily. Josiah is only receiving 1-2 supplemental bottles per day. Don't believe anyone who tells you that a special needs child cannot be breastfed!
K called while we at the pediatrician's office. She is coming out on Monday with one more member of this amazing team! I was able to, briefly, update her with the good news. She shared in our excitement.
I called KF during the late afternoon hour. I was delighted to share our news with her. She has truly been an amazing support throughout this weight gain battle. Last week, she told me that this has become 'personal' for her too. I cannot explain how touched I've been by the amazing supports we have in our life. I told KF that her undying support through my breastfeeding journey, has been invaluable. I don't think I would've continued the BF without her help.
I've learned over the years that the most important things in a person's life, are those worth fighting for. This up-the-down-staircase journey is not always easy. However, it's one of those battles worth fighting. I have amazing parents, an incredible brother, and the best sister-in-law in the world. I am blessed with a husband, who is my best friend. I have 3 amazing boys who teach me new things, everyday. Our family has that one extra chromosome which has introduced us to new friends, new supports, new information, new learning opportunities, and confirmed our belief that we are the luckiest people in the world.
Thursday, March 22, 2012
Great PT visit today :)
Josiah napped late yesterday, from 8:30pm until I woke him at 1:30am. He nursed and was back in bed at 2am. Carl and I followed shortly thereafter. The alarm woke us at 6:30, as scheduled. I woke Josiah up at 7am....I was excited for today's PT visit. I changed him, nursed him, and prepared the living room for his PT visit. K and D arrived promptly at 8am. I was beside myself with excitement. My fingers were crossed that Josiah would show D his new tricks. He did not disappoint.
Josiah was happy to see his 'girlfriends.' He was playful and engaging with both ladies. While on his back, he happily reached, grabbed, and played with several toys. He demonstrated his ability to raise both arms up the air, simultaneously. He played with his fingers and hands. He sucked on his arm lol. His side-lying was wonderful today. He even showed D his new trick of rolling over onto his belly....she had to help him 'unstick' his arms each time (as they become trapped underneath him). D taught him how to use his leg to return to his back from a side-lying position....he later demonstrated his understanding of the lesson. K and I eagerly pulled out the tripod toy to show D Josiah's understanding of cause and effect. When the music stopped, Josiah used his legs to restart the music (this requires moving the middle hanging toy...a green circle). I repositioned the tripod and Josiah proved his ability to utilize his arms for the same purpose. It was very exciting. While on his belly, he utilized many muscles in an effort to move/turn his head. This is a challenge for Josiah, but his proved that he is gaining strength in his neck. D also placed him in a sitting position; he worked hard to keep his head under control.
D was excited about his progress over the last month. She indicated he is (finally) ready for weekly PT. I am THRILLED! Starting next week, Josiah will have PT weekly. He will continue to work with K, weekly, as well. My excitement is overflowing :)
By the end of today's session, Josiah was side-lying, crying, and unable to keep his eyes open. He was exhausted!!! I nursed him for about 5 minutes before he fell fast asleep in my arms. I placed him in his crib at 9:15am. I spent the next FOUR hours getting things done; Finally, at 1:15pm, I woke him. It had been 5.5 hours since he had last eaten. He nursed VERY well, played for awhile, consumed 1.5 ounces of a bottle, and (again) fell fast asleep. I put him down for a nap at 3:30pm.....he remains asleep (it's now 5:30pm).
Tomorrow, he is scheduled for the next Synagis shot. I am, as always, nervous about the weight check. Regardless, I remain optimistic!
I see how far Josiah has come in the past 6 weeks, and I remain in awe. I see his potential. I know all that he will be able to accomplish soon. He is an amazing child. We could not be more blessed that he is ours <3.
As a side note: As I mentioned, yesterday was World Down Syndrome Day. I forgot to mention how we celebrated at 7am......we had ice cream for breakfast.....all of us! I think THAT will be a new tradition :)
Josiah was happy to see his 'girlfriends.' He was playful and engaging with both ladies. While on his back, he happily reached, grabbed, and played with several toys. He demonstrated his ability to raise both arms up the air, simultaneously. He played with his fingers and hands. He sucked on his arm lol. His side-lying was wonderful today. He even showed D his new trick of rolling over onto his belly....she had to help him 'unstick' his arms each time (as they become trapped underneath him). D taught him how to use his leg to return to his back from a side-lying position....he later demonstrated his understanding of the lesson. K and I eagerly pulled out the tripod toy to show D Josiah's understanding of cause and effect. When the music stopped, Josiah used his legs to restart the music (this requires moving the middle hanging toy...a green circle). I repositioned the tripod and Josiah proved his ability to utilize his arms for the same purpose. It was very exciting. While on his belly, he utilized many muscles in an effort to move/turn his head. This is a challenge for Josiah, but his proved that he is gaining strength in his neck. D also placed him in a sitting position; he worked hard to keep his head under control.
D was excited about his progress over the last month. She indicated he is (finally) ready for weekly PT. I am THRILLED! Starting next week, Josiah will have PT weekly. He will continue to work with K, weekly, as well. My excitement is overflowing :)
By the end of today's session, Josiah was side-lying, crying, and unable to keep his eyes open. He was exhausted!!! I nursed him for about 5 minutes before he fell fast asleep in my arms. I placed him in his crib at 9:15am. I spent the next FOUR hours getting things done; Finally, at 1:15pm, I woke him. It had been 5.5 hours since he had last eaten. He nursed VERY well, played for awhile, consumed 1.5 ounces of a bottle, and (again) fell fast asleep. I put him down for a nap at 3:30pm.....he remains asleep (it's now 5:30pm).
Tomorrow, he is scheduled for the next Synagis shot. I am, as always, nervous about the weight check. Regardless, I remain optimistic!
I see how far Josiah has come in the past 6 weeks, and I remain in awe. I see his potential. I know all that he will be able to accomplish soon. He is an amazing child. We could not be more blessed that he is ours <3.
As a side note: As I mentioned, yesterday was World Down Syndrome Day. I forgot to mention how we celebrated at 7am......we had ice cream for breakfast.....all of us! I think THAT will be a new tradition :)
Wednesday, March 21, 2012
A Better Week
I have finally pulled myself out of the 'bummed out' mode, I had slipped into. I had started to pull myself out of that hole. Then, today, I talked to KF (lactation specialist/friend) - it took no time at all to be feeling great again. I always feel better after talking to her :) It was all over the need to supplement feedings with bottles. It seems silly to me but emotions cannot always be explained :)
Josiah has been doing really well. I continue to breastfeed, on-demand. He generally takes 1-2 bottles per day, ranging from 2-4 ounces each. I jumped on the bathroom scale the other day (alone), then again holding him. The difference calculated at 10.6 lbs. So, I'm feeling positive that this week's weight check will produce positive results.
It's been a relatively quiet week. Jesse has been going to school, as usual. He has a field trip tomorrow that he excited about. James has no playgroup this week so it's been an at-home kind of a week. Josiah didn't have EI on Monday; Instead, K & D both come tomorrow. I'm excited for D to see him. She's the physical therapist & I think she will be pleased with his progress. Now, if he could just hold his own head up lol.
Josiah's synagis shot is scheduled for Friday. That's when he will be weighed again; I remain optimistic about those results. Meanwhile, he is alert and playful. He enjoys grabbing at, and grasping, his favorite toys. He continues to roll over from back to belly (oftentimes getting stuck there). He looks less like an infant now. If my eyes do not deceive me, I swear (at times) he looks like he is actually getting a little bit of a belly. These are all good signs that my little heart hero is doing well.
The next two days are sure to be good ones.
Josiah has been doing really well. I continue to breastfeed, on-demand. He generally takes 1-2 bottles per day, ranging from 2-4 ounces each. I jumped on the bathroom scale the other day (alone), then again holding him. The difference calculated at 10.6 lbs. So, I'm feeling positive that this week's weight check will produce positive results.
It's been a relatively quiet week. Jesse has been going to school, as usual. He has a field trip tomorrow that he excited about. James has no playgroup this week so it's been an at-home kind of a week. Josiah didn't have EI on Monday; Instead, K & D both come tomorrow. I'm excited for D to see him. She's the physical therapist & I think she will be pleased with his progress. Now, if he could just hold his own head up lol.
Josiah's synagis shot is scheduled for Friday. That's when he will be weighed again; I remain optimistic about those results. Meanwhile, he is alert and playful. He enjoys grabbing at, and grasping, his favorite toys. He continues to roll over from back to belly (oftentimes getting stuck there). He looks less like an infant now. If my eyes do not deceive me, I swear (at times) he looks like he is actually getting a little bit of a belly. These are all good signs that my little heart hero is doing well.
The next two days are sure to be good ones.
Sunday, February 26, 2012
A Great EI PT Visit & Synagis Shot
Josiah had his monthly EI PT visit on Thursday morning. He had been changed, fed, and was ready for action. D arrived as scheduled and Josiah seemed pleased to see her. He was very content to be placed on his activity mat. D received lots of smiles. Josiah was happy to show off his new tricks. Almost as if on cue, Josiah raised his hands in the air, grasped rings with his hands (and held on tight). He was content to be rocked from side to side. He demonstrated how easily he can raise both legs in the air and bring his knees to his tummy. Then came belly time. For a short time, he seemed amused. He watched a toy, even reaching for it numerous times. With assistance, he grasped the toy and held it tightly between two fingers. He still has very low muscle tone in his neck, which seems to frustrate him. After about 10 minutes on his belly, he decided to had had enough. It took Mom (me) to console him, then he nursed and fell sound asleep (snoring lol).
D seemed pleased with his progress since her last visit. We are too.
Friday morning, Josiah had his next scheduled Synagis shot. He weighed in at 9lbs 3oz. I was a little disappointed as he only gained 3oz in 10 days. However, the cardiologist warned that the weight gain would not be instantaneous. He assured us it will happen. The pediatrician wants us to supplement with bottles. We do try from time to time but Josiah hates bottles. We'll keep up the effort. Here's hoping to a better weight gain next time.
This morning (Saturday), James woke with a fever (101.5) and an unmistakable cold. Jesse has had 'sniffles' for about two weeks. Jesse, too, woke with a slight fever (100). They both responded well to Tylenol. James took his usual nap but unfortunately woke with a higher fever (102.5). Jesse's was still 100. Two more doses of Tylenol seems to have cured Jesse. James went to bed with a fever of 101. I'm suspicious that James could have an ear infection. I'm just wondering if the trip to the pediatrician will be on Sunday morning, or if it will wait until Monday. I'll see how James is in the morning. Family is coming over tomorrow (Sunday) so I'm hoping they will sleep well tonight and awake without fever.
Beyond that, we celebrated my brother's birthday and Carl's birthday this week. And, my friend has been visiting from Ireland. Her little boy is suspected to have autism. My heart truly goes out to her.
D seemed pleased with his progress since her last visit. We are too.
Friday morning, Josiah had his next scheduled Synagis shot. He weighed in at 9lbs 3oz. I was a little disappointed as he only gained 3oz in 10 days. However, the cardiologist warned that the weight gain would not be instantaneous. He assured us it will happen. The pediatrician wants us to supplement with bottles. We do try from time to time but Josiah hates bottles. We'll keep up the effort. Here's hoping to a better weight gain next time.
This morning (Saturday), James woke with a fever (101.5) and an unmistakable cold. Jesse has had 'sniffles' for about two weeks. Jesse, too, woke with a slight fever (100). They both responded well to Tylenol. James took his usual nap but unfortunately woke with a higher fever (102.5). Jesse's was still 100. Two more doses of Tylenol seems to have cured Jesse. James went to bed with a fever of 101. I'm suspicious that James could have an ear infection. I'm just wondering if the trip to the pediatrician will be on Sunday morning, or if it will wait until Monday. I'll see how James is in the morning. Family is coming over tomorrow (Sunday) so I'm hoping they will sleep well tonight and awake without fever.
Beyond that, we celebrated my brother's birthday and Carl's birthday this week. And, my friend has been visiting from Ireland. Her little boy is suspected to have autism. My heart truly goes out to her.
Wednesday, February 22, 2012
February Vacation
It's been a very relaxing few days. Jesse has the week off from preschool. I think we are enjoying February vacation as much as he is. The two trips back/forth to his school are eliminated for the week - it's been a nice change. James's playgroup is cancelled for the same; one less commitment we need to worry about this week. Admittedly, I really missed the EI worker (whom I'll call K) coming to the house this week. James and Josiah both enjoy their time with her each week. I think we all miss her, when she doesn't come out.
Tomorrow is another lazy day at home. I'm looking forward to it. On Thursday, EI PT (whom I'll call D) is coming to work with Josiah. I'm can't wait for her to come out this week. I think she'll be surprised with the change in him. I know we are. Prior to surgery, Josiah slept a lot. He ate every 4 hours; at night, I would have to wake him after 7 hrs to eat. He would primarily lay on his back with arms outstretched beside him. Since surgery, he is awake and alert most of the day. He eats every 1.5-3 hrs. Fortunately at night, he generally sleeps for one 5-6 hr stretch, allowing me to catch up a little bit on sleep. For me, it's like having a newborn all over again (in terms of eating). I swear he's grown in length in the past two weeks. He is constantly moving his arms and legs now. It's exciting to watch the strides he's made in the past few weeks. His muscle tone is still very low in his neck and trunk. He cannot hold his head up yet but I know that will come with time. Tomorrow will be four weeks since his open-heart surgery. I remain in awe of my little heart hero.
On Friday, we return to the pediatrician for Josiah's synagis shot. He'll have a weight check that day. I am nervous that he hasn't gained much weight in the past two weeks despite his constant eating. I have to keep reminding myself that he only had open-heart surgery four weeks ago; the weight gain may not be instant. Also, he gained 11 ounces in the first two weeks after surgery. I believe he's grown in inches and he's constantly moving. This may explain where some of the calories are going. I guess it's just a wait-and-see thing now.
Friday is also Carl's birthday. We celebrated with my family last weekend. We will celebrate with Carl's family this weekend. Then, Monday, we'll be back to our normal routine.
In the meanwhile, I will continue to enjoy the week - mostly commitment free. There's nothing more I enjoy than spending time with my husband and three beautiful boys.
Tomorrow is another lazy day at home. I'm looking forward to it. On Thursday, EI PT (whom I'll call D) is coming to work with Josiah. I'm can't wait for her to come out this week. I think she'll be surprised with the change in him. I know we are. Prior to surgery, Josiah slept a lot. He ate every 4 hours; at night, I would have to wake him after 7 hrs to eat. He would primarily lay on his back with arms outstretched beside him. Since surgery, he is awake and alert most of the day. He eats every 1.5-3 hrs. Fortunately at night, he generally sleeps for one 5-6 hr stretch, allowing me to catch up a little bit on sleep. For me, it's like having a newborn all over again (in terms of eating). I swear he's grown in length in the past two weeks. He is constantly moving his arms and legs now. It's exciting to watch the strides he's made in the past few weeks. His muscle tone is still very low in his neck and trunk. He cannot hold his head up yet but I know that will come with time. Tomorrow will be four weeks since his open-heart surgery. I remain in awe of my little heart hero.
On Friday, we return to the pediatrician for Josiah's synagis shot. He'll have a weight check that day. I am nervous that he hasn't gained much weight in the past two weeks despite his constant eating. I have to keep reminding myself that he only had open-heart surgery four weeks ago; the weight gain may not be instant. Also, he gained 11 ounces in the first two weeks after surgery. I believe he's grown in inches and he's constantly moving. This may explain where some of the calories are going. I guess it's just a wait-and-see thing now.
Friday is also Carl's birthday. We celebrated with my family last weekend. We will celebrate with Carl's family this weekend. Then, Monday, we'll be back to our normal routine.
In the meanwhile, I will continue to enjoy the week - mostly commitment free. There's nothing more I enjoy than spending time with my husband and three beautiful boys.
Saturday, February 11, 2012
Thursday's Follow-up Appt
We took Josiah back to the pediatrician on Thursday. Josiah is doing incredibly well. We were greeted by hugs from our favorite nurse and big smiles from the MD. Josiah weighed a mere 8 lbs 5 oz, last Thursday (one week prior). Amazingly, he weighed 9 lbs during the follow-up visit. The MD was thrilled!!! (as were we). It is well-known that children with DS are slow weight gainers, and Josiah has been no exception to this rule. Add several heart defects, open-heart surgery, and Lasix, and weight loss becomes a given (as was the case w/ Josiah - dropping from 9.3 (at his heaviest) to 8.5 (last week). BUT, it looks like the tide is changing - we are delighted. Josiah is finally gaining weight. On the "normal" chart, his weight currently places him in the 0% (yes, you read that right - the 0th percentile for children his age). On the DS growth chart, he fairs better - he's falls slightly below the 10th percentile for weight). We have turned a corner :)
Josiah received 2 vaccinations and we were given an updated synagis shot date. Jesse got his five-year check up, and passed with flying colors. He's gained 6 lbs this year and grew 3 inches. The pediatrician tells us he will be 5.9/5.10 as an adult - just like his uncles. All the while, James sat in the office and cried - he was quite dramatic, given that he wasn't being seen today. Once the other boys had been examined, and everyone had their jackets back on, James was then willing to blow a kiss to the MD - it was so funny <3.
When I got home, I called my lactation specialist, KF. She has been an incredible support. I started working with her at the end of my pregnancy with James. Breastfeeding didn't work out so well with Jesse, and I was determined to make it work with the next one :) KF and I spoke frequently until James's first birthday. I reconnected with her during my pregnancy with Josiah, and I am so thankful that I did. Given everything that's happened with Josiah, it's been a real blessing to have her support. Without it, I don't know that I would have continued to breastfeed Josiah - it's very frustrating to feed a baby that seemingly doesn't gain weight for weeks/months at a time. Her never-ending support has allowed me to 'stick with it,' and I am so glad that I did. She has never let me lose faith in myself or my ability to nourish my child. She is amazing.
Today has been a quiet day at home. Tomorrow, we are going to see a dear friend of mine (assuming the snow doesn't foul our plans). Sunday, We'll likely see my folks who have been away for a couple of weeks. Monday, Josiah meets with early intervention again. But, I don't want to get too far ahead of myself. I'm enjoying being in the moment.
When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown
The greatest oak was once a little nut who held its ground. ~Author Unknown
Josiah received 2 vaccinations and we were given an updated synagis shot date. Jesse got his five-year check up, and passed with flying colors. He's gained 6 lbs this year and grew 3 inches. The pediatrician tells us he will be 5.9/5.10 as an adult - just like his uncles. All the while, James sat in the office and cried - he was quite dramatic, given that he wasn't being seen today. Once the other boys had been examined, and everyone had their jackets back on, James was then willing to blow a kiss to the MD - it was so funny <3.
When I got home, I called my lactation specialist, KF. She has been an incredible support. I started working with her at the end of my pregnancy with James. Breastfeeding didn't work out so well with Jesse, and I was determined to make it work with the next one :) KF and I spoke frequently until James's first birthday. I reconnected with her during my pregnancy with Josiah, and I am so thankful that I did. Given everything that's happened with Josiah, it's been a real blessing to have her support. Without it, I don't know that I would have continued to breastfeed Josiah - it's very frustrating to feed a baby that seemingly doesn't gain weight for weeks/months at a time. Her never-ending support has allowed me to 'stick with it,' and I am so glad that I did. She has never let me lose faith in myself or my ability to nourish my child. She is amazing.
Today has been a quiet day at home. Tomorrow, we are going to see a dear friend of mine (assuming the snow doesn't foul our plans). Sunday, We'll likely see my folks who have been away for a couple of weeks. Monday, Josiah meets with early intervention again. But, I don't want to get too far ahead of myself. I'm enjoying being in the moment.
When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown
The greatest oak was once a little nut who held its ground. ~Author Unknown
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
Friday, January 20, 2012
Synagis shot & Surgery scheduled
Yesterday, we took Josiah to the pediatrician for his first Synagis shot. He tolerated the shot well & had no adverse affects.
This morning, we received the anticipated call from Children's. Josiah will undergo open heart surgery next Wednesday, Jan 25th. Pre-op is scheduled for Tues.
Despite being anxious about the surgery, we are so pleased that the wait has lessened. 5 days....the countdown begins.
We've arranged for the boys to go to my parents house for the better part of next week. We are so thankful to them for all of their support. We are also thankful to the boys aunts/uncles who are always a constant support. And, as always, we're thankful for friends who are always willing to lend a listening ear, or words of encouragement. It truly does take a village.....
This morning, we received the anticipated call from Children's. Josiah will undergo open heart surgery next Wednesday, Jan 25th. Pre-op is scheduled for Tues.
Despite being anxious about the surgery, we are so pleased that the wait has lessened. 5 days....the countdown begins.
We've arranged for the boys to go to my parents house for the better part of next week. We are so thankful to them for all of their support. We are also thankful to the boys aunts/uncles who are always a constant support. And, as always, we're thankful for friends who are always willing to lend a listening ear, or words of encouragement. It truly does take a village.....
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
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