The Time Has Come
The old adage states, "If March comes in like a lion, then it will go out like a lamb." This has certainly been the case for us. March came in roaring like a lion for our family as we closed out February with illness, a trip to the ER, and appointments on March 2nd for Elizabeth. We are hopeful that March will pass by and close out like a lamb as promised in the old proverb.
As you may know if you read the previous post, Elizabeth became sick in mid-February with pneumonia. Jason took off pretty much the entire week to stay home with her. She was too sick to send to daycare. Thankfully, my Aunt Lori helped us out and came in to our house to watch her one day so that Jason would not have to take off. It did not seem that the antibiotic was working, and so we had a follow-up appointment with her pediatrician at the end of the week, on February 27th, and they changed up her antibiotic hoping for better results.
Elizabeth did not have much of an appetite during the week, and we attributed that to her having pneumonia and not feeling up to eating or drinking. However, on Friday evening into Saturday we struggled even more to get her to eat or drink anything. On Saturday morning, we decided that we needed to make a trip to the ER. She was not herself. Elizabeth was very lethargic, cranky, and kept grunting and seemed very uncomfortable. So, my mom and I took Elizabeth to the ER at Children's Hospital while Jason stayed at home with Celtan.
The Children's Hospital ER very quickly took care of Elizabeth. They checked her vitals, ordered some lab work, and decided that she needed IV fluids. The labs revealed that she was dehydrated and her blood sugar was low. So, they continued giving her IV fluids, and we got her to drink a little bit of juice. Within a few hours, she was perking up, and by the time we were discharged, she was a completely different little girl. She was happy, playing with her IV lines, smiling, and I was relieved to see the transformation in her. She really worried me earlier, and I knew that there was something wrong. I was so glad that they were able to help her, and that it was a relatively easy and quick fix. The new antibiotic seems to have done the trick, too, and the pneumonia is gone.
The study showed that her swallowing was not showing much improvement since the previous swallow study that was done in September. We did notice that she did not show any silent aspiration on the study, which was excellent news and evidence that filling her laryngeal cleft during the surgery in December was successful. However, as the test continued, we noticed more evidence that she was still at a high risk for aspirating while eating and drinking. We stopped her eating and drinking during the study as we saw deeper penetration of fluids into her lungs and heading towards going down the wrong pipe. We did not want her to have a full aspiration, especially since she was recovering from having pneumonia. The evidence was before us on the test, and it gave us a huge piece to the G-Tube equation. We now knew that despite the surgery, that she was still at a very high risk for aspiration. The main culprit: her low muscle tone. The longer she ate or drank during the study, the worse her swallowing appeared on the test. The more prolonged the eating, the more likely she is to aspirate. Her already weak muscles become tired, and she has progressively less control over her swallowing to prevent liquids and foods from going down the wrong pipe and leading to aspiration into her lungs.
We realized that once we found out that she had pneumonia, and then with the ER visit for dehydration, that the G-Tube was becoming more and more of a possibility. When we left the swallow study, we knew that there was even a greater reason for Elizabeth getting a G-Tube. If her swallowing is unsafe, then the G-Tube is vital for safety reasons and to prevent aspiration into her lungs due to her poor ability to swallow effectively. We headed to the appointment with Matt Ford in Cleft/ Craniofacial and to Dr. Jabbour the ENT to have them weigh in on the results and our next steps.
During our appointment with Matt Ford and Dr. Jabbour, we discussed a lot of the reasons why Elizabeth has difficulty swallowing and compared the two swallow studies. While the surgery seems successful in the fact that we did not see any silent aspirations, there are still major safety concerns related to her swallowing. Her sub-mucous cleft palate is also likely contributing to her swallowing issues, because it prohibits her from having an effective latch, suck and swallow reflex. However, we can't have her cleft palate repaired until we see how her speech develops, and right now we are not making much progress in the way of speech development. The primary culprit for her unsafe swallowing is her low muscle tone. She has low tone and muscle weakness all over her body, which is also one reason why she is so delayed in achieving gross motor milestones. Unfortunately, there is no surgery that can be done to correct or improve the muscle tone in her throat and airway. At the end of the appointment, the verdict had been reached, and the time had come for us to get a G-Tube put in Elizabeth to provide a safe, efficient and effective means to keep her nourished, hydrated and give her a safer way to eat and drink.
The intent is for the G-Tube to be temporary, but time will tell. We see Dr. Jabbour and Matt Ford in ENT/ Cleft and Craniofacial Division in 6 months. We will repeat the swallow study around that time, or possibly later, to see if her increased nutrition has helped to further develop her muscle tone, which will further develop and improve her swallowing. That is our hope. If we can get her bulked up and growing from the nutrition from the G-Tube, then the theory is that as she grows and is better nourished, then her muscle tone will improve, and so will her swallowing. If these things occur, then the G-Tube will be temporary. If the muscle tone does not improve, then the G-Tube may become more of a permanent thing. Only time will tell. In the meantime, we were referred to Pediatric Surgery to set up an appointment to have a G-Tube placed in Elizabeth.
Also, the plan will be for her to still eat by mouth, especially purees. She has poor oral motor skills, and she does not bite or chew very well. Her OT and Speech Therapist work on feeding therapy during their twice weekly sessions. We don't want her to loose any of the feeding skills that has has now, and we also still want her to keep exercising her muscles in her mouth and throat. If the G-Tube is going to be temporary, we especially do not want her to lose any feeding skills. So, we will feed her what is safe and what we can by mouth. The benefit is that on days when she doesn't want to eat, or only eats a little bit, by mouth, then we can supplement her diet by feeding her with the G-tube. So, meal time and her poor appetite will no longer be a struggle.
I was naturally a little bit upset about the verdict being reached regarding the G-Tube. We had all hoped that it could be avoided, and we were all expecting to make the decision at the end of the month. However, the time has come for a variety of very valid reasons, due to recent issues with weight loss, dehydration, pneumonia and a swallow study that indicated that her swallowing is clearly still unsafe, it is for Elizabeth's well being that it is best that we do not wait any longer. So, I made an appointment with Pediatric Surgery for Friday, March 6th. The surgeon on Elizabeth's case will be Dr. Austin, and we have heard that she is wonderful.
Jason took off from work to attend the appointment with the surgeon with me. We sent Celtan to the Lemieux Sibling Center at Children's Hospital while we were at our appointment. We met with the surgeon and discussed the procedure, a little bit about what to expect after surgery, and we also discussed the necessity of the surgeon doing a procedure called a "Nissen Wrap" to Elizabeth to help make her G-Tube experience more successful.
A "Nissen Wrap" is done on many patients with G-Tubes who have a history of reflux and low muscle tone. Although Elizabeth does not have reflux, she does have low muscle tone. The "Nissen Wrap" would be beneficial to her to help prevent reflux that could be caused by her having low tone, Kids with low muscle tone, like Elizabeth, are at a higher risk for experiencing reflux after a G-Tube is placed due to the fact that fluids and feed are directly being placed in their stomachs. Sometimes, the body will push foods up through the esophagus (reflux) rather than have them go down the other natural direction through the small intestine, etc. This occurs in children with low muscle tone, because their low tone sometimes makes it difficult for their bodies to effectively stop the reflux. So, at this time, we are planning to do the Nissen Wrap. After talking with several doctors, parents of children with G-Tubes, nurses, etc., we feel it would be the best thing for Elizabeth to prevent reflux and to help her have a more successful experience with the G-Tube. So, the day of her surgery, they will place a G-Tube into her stomach. Then, they will perform the "Nissen Wrap" procedure, which will make a tighter seal around her esophagus to help prevent any reflux that may occur due to her low muscle tone.
We left the appointment, and we scheduled her surgery for March 30th. Then, we picked up Celtan at the Lemieux Sibling Center. He played there while we were at the appointment, and he said that he had a great time. He even made a craft! Celtan asked when he could go back, so he has an appointment to go back and play at the center when I take Elizabeth to her Urology appointment on March 11th.
We had some time to kill between the surgery appointment and her Upper GI test in the Radiology Department. I had made arrangements to have a meeting for Celtan with a Child Life Specialist. I was grateful to Breanne Gray for helping to set up a session with herself and a Child Life Specialist, Maggie, to explain the G-Tube to Celtan. Maggie brought a doll with a G-Tube and a bear with a G-Tube. She explained to Celtan what that would look like, what it will do for Elizabeth and how it will help her. Maggie told Celtan that we will feed Elizabeth through the tube to help her grow and be stronger. He listened and then asked if he could keep the bear. Celtan kept the bear with the G-Tube, and he will explain to anyone who asks that this is how his sister will eat to help her grow big and strong. He named the bear, Ted E. Bear, just in case you were wondering.
We finished up the day with Elizabeth's Upper GI test. This test is standard procedure to have done prior to having a G-Tube placed just to look at the anatomy of the stomach and the esophagus prior to surgery. Elizabeth did very well during the test. Her esophagus and stomach are the right size and shape and in the right place, which are all good things to hear and to know before they put the G-Tube into her stomach. Here are some pictures of our day at Children's. Celtan loves the toy triceratops!
Since Elizabeth will require quite a bit of care, and there will be a lot to learn about the G-Tube (how to change it, clean it, amounts of feeds, etc.), her doctors, Jason and I agree that it would be best for her to be home. Also, the first 12 weeks require trips to the hospital if anything out of the ordinary occurs with the G-tube. So, my last day at Karns City for the year will be Friday, March 27th, and I will be taking unpaid leave for the remainder of the school year to be at home to care for her. I am so appreciative for the administration at KC being so understanding about our situation. While the prospect of not getting paid is going to impact us significantly, it will be the best thing for Elizabeth. I will be returning to KC in the fall. In the meantime, it will allow me to be at home and to focus on her and her care. We will become experts on her feeding tube, and we will have time to figure out care for her in the fall when school starts back up.
We ended our day on Friday on a very high note, because we were informed that we were going to be given 4 tickets for our family through the "Izzie's Gifts of Hope" Foundation for Sunday evening. They were sponsoring this event as a night out for special needs children and their families. We were thrilled about this news, especially Celtan. Every time he saw the commercial on TV for Disney on Ice he asked if we could go. He loves Disney! However, we would not have been able to afford to take him, so we were very grateful for the tickets. I had found out in the meantime that my family was going to surprise us with tickets, but since we were given tickets it allowed my sisters, Holly and Becca, to attend as well. So, Jason, Celtan, Elizabeth and I all had seats in the Izzie's Gifts section, and my parents, sisters, and my sister Emily's kids and her husband all had tickets in another section. It was a really fun night. I cannot begin to accurately describe the joy on Celtan's face as he saw all of his favorite characters come out onto the ice. He sang along, danced and laughed, and it was evident that he was having an amazing and magical time. Jason and I were pleased to see that even Elizabeth seemed to like the show. We were worried about the noise factor with her Sensory Processing Disorder. However, on more than one occasion, we saw her kicking her legs, which is usually a sign that she is happy or excited. We also swear we saw her try to clap at one point. She only made it through the first half of the show. Jason pushed her around Consol Energy Center for the second half. We were impressed that she made it that long. It was a night that we will always remember, and we cannot thank Izzie's Gifts enough for a night full of wonderful memories. Here are some pictures of the kids at the event.
Elizabeth also has been recently showing some interest in her Princess Sophia tea table. She crawled over to it, turned and looked at me, and so I sat her up in the chair. She sat there for about 5 minutes playing with her vanity set and tea toys. I watched her and took pictures with tears in my eyes. She only shows interest in a few specific toys, but you could see how happy she was to be sitting at that table. I think the pictures say it all, so you can decide for yourself.
We have appointments this week with Urology, because the doctors are trying to figure out if there are any physiological reasons why she keeps having recurrent UTIs. I'll be sure to update after the appointment. Our secret angel has struck again, and it was a very pleasant surprise. We are so grateful to all of the wonderful people who have sent us cards, because some have very generous surprises in them. We are so incredibly humbled by the generosity that so many people have given to us throughout this journey. From the cards, to the prayers, to people making food for us, to being given tickets to see Disney on Ice, we are so incredibly grateful.
Here are just some pictures of our two greatest blessings:
Elizabeth did not have much of an appetite during the week, and we attributed that to her having pneumonia and not feeling up to eating or drinking. However, on Friday evening into Saturday we struggled even more to get her to eat or drink anything. On Saturday morning, we decided that we needed to make a trip to the ER. She was not herself. Elizabeth was very lethargic, cranky, and kept grunting and seemed very uncomfortable. So, my mom and I took Elizabeth to the ER at Children's Hospital while Jason stayed at home with Celtan.
The Children's Hospital ER very quickly took care of Elizabeth. They checked her vitals, ordered some lab work, and decided that she needed IV fluids. The labs revealed that she was dehydrated and her blood sugar was low. So, they continued giving her IV fluids, and we got her to drink a little bit of juice. Within a few hours, she was perking up, and by the time we were discharged, she was a completely different little girl. She was happy, playing with her IV lines, smiling, and I was relieved to see the transformation in her. She really worried me earlier, and I knew that there was something wrong. I was so glad that they were able to help her, and that it was a relatively easy and quick fix. The new antibiotic seems to have done the trick, too, and the pneumonia is gone.
We had a swallow study and an appointment with the Cleft/ Craniofacial Division and her ENT on Monday, March 2nd. We have been waiting for this appointment, because the results of the swallow study were a big piece to the equation for Elizabeth having a G-Tube. The original plan was to have a series of appointments during the month of March, and to reach a verdict on whether or not she needed a G-tube sometime at the end of the month. The swallow study was being done as a follow up to her surgery in December for her swallowing issues. We were hoping to see much improved results on the study.
The study showed that her swallowing was not showing much improvement since the previous swallow study that was done in September. We did notice that she did not show any silent aspiration on the study, which was excellent news and evidence that filling her laryngeal cleft during the surgery in December was successful. However, as the test continued, we noticed more evidence that she was still at a high risk for aspirating while eating and drinking. We stopped her eating and drinking during the study as we saw deeper penetration of fluids into her lungs and heading towards going down the wrong pipe. We did not want her to have a full aspiration, especially since she was recovering from having pneumonia. The evidence was before us on the test, and it gave us a huge piece to the G-Tube equation. We now knew that despite the surgery, that she was still at a very high risk for aspiration. The main culprit: her low muscle tone. The longer she ate or drank during the study, the worse her swallowing appeared on the test. The more prolonged the eating, the more likely she is to aspirate. Her already weak muscles become tired, and she has progressively less control over her swallowing to prevent liquids and foods from going down the wrong pipe and leading to aspiration into her lungs.
We realized that once we found out that she had pneumonia, and then with the ER visit for dehydration, that the G-Tube was becoming more and more of a possibility. When we left the swallow study, we knew that there was even a greater reason for Elizabeth getting a G-Tube. If her swallowing is unsafe, then the G-Tube is vital for safety reasons and to prevent aspiration into her lungs due to her poor ability to swallow effectively. We headed to the appointment with Matt Ford in Cleft/ Craniofacial and to Dr. Jabbour the ENT to have them weigh in on the results and our next steps.
During our appointment with Matt Ford and Dr. Jabbour, we discussed a lot of the reasons why Elizabeth has difficulty swallowing and compared the two swallow studies. While the surgery seems successful in the fact that we did not see any silent aspirations, there are still major safety concerns related to her swallowing. Her sub-mucous cleft palate is also likely contributing to her swallowing issues, because it prohibits her from having an effective latch, suck and swallow reflex. However, we can't have her cleft palate repaired until we see how her speech develops, and right now we are not making much progress in the way of speech development. The primary culprit for her unsafe swallowing is her low muscle tone. She has low tone and muscle weakness all over her body, which is also one reason why she is so delayed in achieving gross motor milestones. Unfortunately, there is no surgery that can be done to correct or improve the muscle tone in her throat and airway. At the end of the appointment, the verdict had been reached, and the time had come for us to get a G-Tube put in Elizabeth to provide a safe, efficient and effective means to keep her nourished, hydrated and give her a safer way to eat and drink.
The intent is for the G-Tube to be temporary, but time will tell. We see Dr. Jabbour and Matt Ford in ENT/ Cleft and Craniofacial Division in 6 months. We will repeat the swallow study around that time, or possibly later, to see if her increased nutrition has helped to further develop her muscle tone, which will further develop and improve her swallowing. That is our hope. If we can get her bulked up and growing from the nutrition from the G-Tube, then the theory is that as she grows and is better nourished, then her muscle tone will improve, and so will her swallowing. If these things occur, then the G-Tube will be temporary. If the muscle tone does not improve, then the G-Tube may become more of a permanent thing. Only time will tell. In the meantime, we were referred to Pediatric Surgery to set up an appointment to have a G-Tube placed in Elizabeth.
Also, the plan will be for her to still eat by mouth, especially purees. She has poor oral motor skills, and she does not bite or chew very well. Her OT and Speech Therapist work on feeding therapy during their twice weekly sessions. We don't want her to loose any of the feeding skills that has has now, and we also still want her to keep exercising her muscles in her mouth and throat. If the G-Tube is going to be temporary, we especially do not want her to lose any feeding skills. So, we will feed her what is safe and what we can by mouth. The benefit is that on days when she doesn't want to eat, or only eats a little bit, by mouth, then we can supplement her diet by feeding her with the G-tube. So, meal time and her poor appetite will no longer be a struggle.
I was naturally a little bit upset about the verdict being reached regarding the G-Tube. We had all hoped that it could be avoided, and we were all expecting to make the decision at the end of the month. However, the time has come for a variety of very valid reasons, due to recent issues with weight loss, dehydration, pneumonia and a swallow study that indicated that her swallowing is clearly still unsafe, it is for Elizabeth's well being that it is best that we do not wait any longer. So, I made an appointment with Pediatric Surgery for Friday, March 6th. The surgeon on Elizabeth's case will be Dr. Austin, and we have heard that she is wonderful.
Jason took off from work to attend the appointment with the surgeon with me. We sent Celtan to the Lemieux Sibling Center at Children's Hospital while we were at our appointment. We met with the surgeon and discussed the procedure, a little bit about what to expect after surgery, and we also discussed the necessity of the surgeon doing a procedure called a "Nissen Wrap" to Elizabeth to help make her G-Tube experience more successful.
A "Nissen Wrap" is done on many patients with G-Tubes who have a history of reflux and low muscle tone. Although Elizabeth does not have reflux, she does have low muscle tone. The "Nissen Wrap" would be beneficial to her to help prevent reflux that could be caused by her having low tone, Kids with low muscle tone, like Elizabeth, are at a higher risk for experiencing reflux after a G-Tube is placed due to the fact that fluids and feed are directly being placed in their stomachs. Sometimes, the body will push foods up through the esophagus (reflux) rather than have them go down the other natural direction through the small intestine, etc. This occurs in children with low muscle tone, because their low tone sometimes makes it difficult for their bodies to effectively stop the reflux. So, at this time, we are planning to do the Nissen Wrap. After talking with several doctors, parents of children with G-Tubes, nurses, etc., we feel it would be the best thing for Elizabeth to prevent reflux and to help her have a more successful experience with the G-Tube. So, the day of her surgery, they will place a G-Tube into her stomach. Then, they will perform the "Nissen Wrap" procedure, which will make a tighter seal around her esophagus to help prevent any reflux that may occur due to her low muscle tone.
We left the appointment, and we scheduled her surgery for March 30th. Then, we picked up Celtan at the Lemieux Sibling Center. He played there while we were at the appointment, and he said that he had a great time. He even made a craft! Celtan asked when he could go back, so he has an appointment to go back and play at the center when I take Elizabeth to her Urology appointment on March 11th.
We had some time to kill between the surgery appointment and her Upper GI test in the Radiology Department. I had made arrangements to have a meeting for Celtan with a Child Life Specialist. I was grateful to Breanne Gray for helping to set up a session with herself and a Child Life Specialist, Maggie, to explain the G-Tube to Celtan. Maggie brought a doll with a G-Tube and a bear with a G-Tube. She explained to Celtan what that would look like, what it will do for Elizabeth and how it will help her. Maggie told Celtan that we will feed Elizabeth through the tube to help her grow and be stronger. He listened and then asked if he could keep the bear. Celtan kept the bear with the G-Tube, and he will explain to anyone who asks that this is how his sister will eat to help her grow big and strong. He named the bear, Ted E. Bear, just in case you were wondering.
We finished up the day with Elizabeth's Upper GI test. This test is standard procedure to have done prior to having a G-Tube placed just to look at the anatomy of the stomach and the esophagus prior to surgery. Elizabeth did very well during the test. Her esophagus and stomach are the right size and shape and in the right place, which are all good things to hear and to know before they put the G-Tube into her stomach. Here are some pictures of our day at Children's. Celtan loves the toy triceratops!
Since Elizabeth will require quite a bit of care, and there will be a lot to learn about the G-Tube (how to change it, clean it, amounts of feeds, etc.), her doctors, Jason and I agree that it would be best for her to be home. Also, the first 12 weeks require trips to the hospital if anything out of the ordinary occurs with the G-tube. So, my last day at Karns City for the year will be Friday, March 27th, and I will be taking unpaid leave for the remainder of the school year to be at home to care for her. I am so appreciative for the administration at KC being so understanding about our situation. While the prospect of not getting paid is going to impact us significantly, it will be the best thing for Elizabeth. I will be returning to KC in the fall. In the meantime, it will allow me to be at home and to focus on her and her care. We will become experts on her feeding tube, and we will have time to figure out care for her in the fall when school starts back up.
We ended our day on Friday on a very high note, because we were informed that we were going to be given 4 tickets for our family through the "Izzie's Gifts of Hope" Foundation for Sunday evening. They were sponsoring this event as a night out for special needs children and their families. We were thrilled about this news, especially Celtan. Every time he saw the commercial on TV for Disney on Ice he asked if we could go. He loves Disney! However, we would not have been able to afford to take him, so we were very grateful for the tickets. I had found out in the meantime that my family was going to surprise us with tickets, but since we were given tickets it allowed my sisters, Holly and Becca, to attend as well. So, Jason, Celtan, Elizabeth and I all had seats in the Izzie's Gifts section, and my parents, sisters, and my sister Emily's kids and her husband all had tickets in another section. It was a really fun night. I cannot begin to accurately describe the joy on Celtan's face as he saw all of his favorite characters come out onto the ice. He sang along, danced and laughed, and it was evident that he was having an amazing and magical time. Jason and I were pleased to see that even Elizabeth seemed to like the show. We were worried about the noise factor with her Sensory Processing Disorder. However, on more than one occasion, we saw her kicking her legs, which is usually a sign that she is happy or excited. We also swear we saw her try to clap at one point. She only made it through the first half of the show. Jason pushed her around Consol Energy Center for the second half. We were impressed that she made it that long. It was a night that we will always remember, and we cannot thank Izzie's Gifts enough for a night full of wonderful memories. Here are some pictures of the kids at the event.
Elizabeth also has been recently showing some interest in her Princess Sophia tea table. She crawled over to it, turned and looked at me, and so I sat her up in the chair. She sat there for about 5 minutes playing with her vanity set and tea toys. I watched her and took pictures with tears in my eyes. She only shows interest in a few specific toys, but you could see how happy she was to be sitting at that table. I think the pictures say it all, so you can decide for yourself.
We have appointments this week with Urology, because the doctors are trying to figure out if there are any physiological reasons why she keeps having recurrent UTIs. I'll be sure to update after the appointment. Our secret angel has struck again, and it was a very pleasant surprise. We are so grateful to all of the wonderful people who have sent us cards, because some have very generous surprises in them. We are so incredibly humbled by the generosity that so many people have given to us throughout this journey. From the cards, to the prayers, to people making food for us, to being given tickets to see Disney on Ice, we are so incredibly grateful.
Here are just some pictures of our two greatest blessings:
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