It was a busy day today. Alli had labs drawn, an MRI, and is set up on video EEG. She made it through anesthesia with flying colors. She is resting comfortably now, hopefully for the night.
I met with Dr. Wheless this morning. I must say, we are so blessed to be able to work with both him and Dr. Flamini. We talked primarily about her medical history, with obvious emphasis on her infantile spasms. The objective of today and part of tomorrow is data gathering. I imagine we will start to hear some initial impressions tomorrow afternoon.
Thanks for all of the support and well wishes. We are both doing great. The food is good and I have a great view from Alli's room!
Sisters
Monday, December 10, 2012
Advent and Neurology
Christmas is without a doubt my favorite time of year. I have always loved it. As a child it was great fun to get together with family, to exchange gifts, to celebrate with Aunt Ronnie and Sr. Jan on Christmas morning. I have nothing but good memories about Christmas; even the year Paul threw up on Christmas Eve after opening the Mickey Mouse bank. That was a good Christmas too.
As an adult my love of Christmas has really turned in to a love of Advent. The magic of Santa and exchanging gifts wears off, but there is a renewed sense of hope in preparing for the birth of Jesus and the coming of the New Year. I always find it ironic that Christmas is such a joyous time, but the readings at mass really tend to be more cautionary and not always the "feel good" sections of the new testament. Whereas the celebration of Easter conjures these hope filled and joyful readings, but we're met with the resurrection. It isn't that I don't get what is going on. It is just dichotomy of what is transpiring that I find so interesting. So it seems that the last two years have found us preparing for Christmas during Advent, but also preparing ourselves for what lies ahead with Alli.
Last year at this time we were adjusting to life at home, post op with Alli, learning how to give medication, and trying to keep her as comfortable as possible. All the while rejoicing that she appeared to be seizure free. The preparation for Christmas was somewhat filled with anxiety given our new circumstances. Alli wasn't feeding well. It was difficult to administer multiple medications by mouth. But, there was great joy in beginning this new phase of her life, post cardiac repair. She had a new rosy hue, a repaired heart, and we would meet the other challenges as they came.
This year we find ourselves at LeBonheur Children's Hospital in Memphis. We are here to meet with Dr. Wheless and have him evaluate Alli's neurological status. Beginning today she will undergo an MRI, Video EEG Monitoring, Neuropsychology testing, and regular consultations with the doctor. They have told us to plan to be here for at least a week. So, here we are. We stayed last night at the Fedex Family House across the street from the hospital. Beautiful accommodations. We checked in around 6:00 pm CST. There were volunteers serving dinner. So, after we unpacked, I ventured down with Alli to have a bite to eat. I think there was almost a brawl between the ladies about who could hold Alli while I ate. Then we returned to our room and snuggled in for the night.
We had an early start this morning. Up at 4:30 to be at registration by 5:30 am. Most of you know I am not a morning person, so that was a stretch. But, all went smoothly. We met several other families in the waiting room. All here to see Dr. Wheless.
We are currently waiting for a cardiology consult before Alli has her MRI. The anesthesiologists want to be sure they understand her cardiac status before administering anesthesia. Once she has her MRI she will be hooked up for video EEG monitoring and we expect to meet with Dr. Wheless this afternoon.
I will keep everyone posted as events occur, results come in, treatment is discussed, etc. At this point, I am actually most interested in the neuropsychology testing. They will evaluate her to determine what her developmental age is.
Samantha started in the primary classroom this morning. Aside from me sending Jason to the wrong car pool line (oops!) it was smooth sailing for her. I can't wait to hear from her about it later!
As an adult my love of Christmas has really turned in to a love of Advent. The magic of Santa and exchanging gifts wears off, but there is a renewed sense of hope in preparing for the birth of Jesus and the coming of the New Year. I always find it ironic that Christmas is such a joyous time, but the readings at mass really tend to be more cautionary and not always the "feel good" sections of the new testament. Whereas the celebration of Easter conjures these hope filled and joyful readings, but we're met with the resurrection. It isn't that I don't get what is going on. It is just dichotomy of what is transpiring that I find so interesting. So it seems that the last two years have found us preparing for Christmas during Advent, but also preparing ourselves for what lies ahead with Alli.
Last year at this time we were adjusting to life at home, post op with Alli, learning how to give medication, and trying to keep her as comfortable as possible. All the while rejoicing that she appeared to be seizure free. The preparation for Christmas was somewhat filled with anxiety given our new circumstances. Alli wasn't feeding well. It was difficult to administer multiple medications by mouth. But, there was great joy in beginning this new phase of her life, post cardiac repair. She had a new rosy hue, a repaired heart, and we would meet the other challenges as they came.
This year we find ourselves at LeBonheur Children's Hospital in Memphis. We are here to meet with Dr. Wheless and have him evaluate Alli's neurological status. Beginning today she will undergo an MRI, Video EEG Monitoring, Neuropsychology testing, and regular consultations with the doctor. They have told us to plan to be here for at least a week. So, here we are. We stayed last night at the Fedex Family House across the street from the hospital. Beautiful accommodations. We checked in around 6:00 pm CST. There were volunteers serving dinner. So, after we unpacked, I ventured down with Alli to have a bite to eat. I think there was almost a brawl between the ladies about who could hold Alli while I ate. Then we returned to our room and snuggled in for the night.
We had an early start this morning. Up at 4:30 to be at registration by 5:30 am. Most of you know I am not a morning person, so that was a stretch. But, all went smoothly. We met several other families in the waiting room. All here to see Dr. Wheless.
We are currently waiting for a cardiology consult before Alli has her MRI. The anesthesiologists want to be sure they understand her cardiac status before administering anesthesia. Once she has her MRI she will be hooked up for video EEG monitoring and we expect to meet with Dr. Wheless this afternoon.
I will keep everyone posted as events occur, results come in, treatment is discussed, etc. At this point, I am actually most interested in the neuropsychology testing. They will evaluate her to determine what her developmental age is.
Samantha started in the primary classroom this morning. Aside from me sending Jason to the wrong car pool line (oops!) it was smooth sailing for her. I can't wait to hear from her about it later!
Monday, December 3, 2012
Success!
Today was a whirlwind. This entire week is actually insane. Alli and I are scheduled to travel to Memphis this weekend and will check in to the Epilepsy Monitoring Unit and LeBonheur Children's Hospital on Monday morning. So, there is a lot to do in preparation for our trip.
Today Alli had both physical and speech therapy, labs drawn, and her first g-tube change. Knowing it was a crazy day of appointments, I had the crock pot going first thing this morning. Alli is making good progress in both development areas. She is developing greater trunk strength, tolerating long periods of time on her stomach, rolling to each side, occasionally rolling all the way over, mastering head control, and improving at her prop sitting. We are going to have her fitted for a stander, which will hopefully help her with weight bearing on her little feet and get her ready for standing/walking. She's tolerating small tastes in her mouth as well as oral stimulation. She gets understandably nervous when things come toward her mouth, but once she realizes it is a friendly encounter, she tends to relax a little. This will be an up hill battle for her. She's had a number of traumatic things happen through her mouth, so her aversion is understandable. We passed the g-tube change with flying colors. The nurse said her stoma (site where the g tube is inserted in to the stomach) looks great and I did a good job taking out the old tube and replacing it with a new one. I have to say, I was pretty proud of myself and she was a trooper. It was much less traumatic then I imagined. We just went in and took care of business. Coming up over the rest of the week, Alli will have an appointment with Dr. Flamini to discuss her most recent EEG and labs, determine if we need to make any additional medication changes, and confirm whether or not it is still advisable to make the trip to Memphis. She will also have her synagis shot on Wednesday, which protects her from RSV.
It was a weird feeling crossing the one year mark from when she started having spasms. At this time last year, we thought we had dodged a bullet. As we searched for the "why," we had convinced ourselves that the spasms were what brought us to her heart surgery and she would get through initial treatment and move on. We never anticipated we would still be dealing with this a year later. As I look at her now, it is hard to tell what her actual neurological status is. There are definitely signs of development and improvement, but alas, we have the messy EEGs. So, hopefully our appointment on Wednesday and our trip to Memphis will help to provide some clarity as to her neurological picture and what we can expect going forward.
Samantha graduates to the primary classroom this week. She will now be in a room with 3-6 year olds. We are excited to see what lies ahead for her in this new experience. We have also had great success with the Tot Clock. We had been making excuses for months about the acceptability of Samantha climbing in to our bed at night. She would go down just fine in her big girl bed, but without fail, at some point during the night, we would find her at the foot of our bed, or wedged in between us. A quick conversation with the pediatrician lead us to 1 of 2 choices - 1. locking her in or 2. finding a tool that would give her a visual cue as to when it was "sleeping time" vs. "awake time." We opted for the more gentle approach and invested in a Tot Clock. Best decision ever. We still have occasional middle of the night visits, but they are few and far between. It has also been a lifesaver with naps. She now understands that she has rest time, regardless of whether or not she chooses to sleep, until the yellow light comes on. Can't say enough good things about it. Samantha is growing more and more interested in her baby brother. She talks to him in my belly. In the mornings she will come over in hopes that he will move or kick and says "wake up little man! it's your sister, Samantha." Melts my heart. She is so excited for him to arrive. She also likes to confirm that everyone was born and she knows that she was born in the hospital. She tells me this repeatedly throughout the day. She has hit a bit of a whining phase, which I'm not going to lie, drives me nuts. This weekend, as I was enjoying my Michael Buble Ave Maria and other Christmas music, I found myself losing my patience with the whining and scolding Samantha. It takes a special person to realize the absolute ridiculousness of losing your patience with a three year old with the Ave Maria playing in the background. All I can do is shake my head sometimes.
Well, that is the update on our end for now. I will keep you posted throughout our adventure next week. In the meantime, enjoy the blessings and joy that the Christmas and Advent season bring. It is a wonderful time of year!
Today Alli had both physical and speech therapy, labs drawn, and her first g-tube change. Knowing it was a crazy day of appointments, I had the crock pot going first thing this morning. Alli is making good progress in both development areas. She is developing greater trunk strength, tolerating long periods of time on her stomach, rolling to each side, occasionally rolling all the way over, mastering head control, and improving at her prop sitting. We are going to have her fitted for a stander, which will hopefully help her with weight bearing on her little feet and get her ready for standing/walking. She's tolerating small tastes in her mouth as well as oral stimulation. She gets understandably nervous when things come toward her mouth, but once she realizes it is a friendly encounter, she tends to relax a little. This will be an up hill battle for her. She's had a number of traumatic things happen through her mouth, so her aversion is understandable. We passed the g-tube change with flying colors. The nurse said her stoma (site where the g tube is inserted in to the stomach) looks great and I did a good job taking out the old tube and replacing it with a new one. I have to say, I was pretty proud of myself and she was a trooper. It was much less traumatic then I imagined. We just went in and took care of business. Coming up over the rest of the week, Alli will have an appointment with Dr. Flamini to discuss her most recent EEG and labs, determine if we need to make any additional medication changes, and confirm whether or not it is still advisable to make the trip to Memphis. She will also have her synagis shot on Wednesday, which protects her from RSV.
It was a weird feeling crossing the one year mark from when she started having spasms. At this time last year, we thought we had dodged a bullet. As we searched for the "why," we had convinced ourselves that the spasms were what brought us to her heart surgery and she would get through initial treatment and move on. We never anticipated we would still be dealing with this a year later. As I look at her now, it is hard to tell what her actual neurological status is. There are definitely signs of development and improvement, but alas, we have the messy EEGs. So, hopefully our appointment on Wednesday and our trip to Memphis will help to provide some clarity as to her neurological picture and what we can expect going forward.
Samantha graduates to the primary classroom this week. She will now be in a room with 3-6 year olds. We are excited to see what lies ahead for her in this new experience. We have also had great success with the Tot Clock. We had been making excuses for months about the acceptability of Samantha climbing in to our bed at night. She would go down just fine in her big girl bed, but without fail, at some point during the night, we would find her at the foot of our bed, or wedged in between us. A quick conversation with the pediatrician lead us to 1 of 2 choices - 1. locking her in or 2. finding a tool that would give her a visual cue as to when it was "sleeping time" vs. "awake time." We opted for the more gentle approach and invested in a Tot Clock. Best decision ever. We still have occasional middle of the night visits, but they are few and far between. It has also been a lifesaver with naps. She now understands that she has rest time, regardless of whether or not she chooses to sleep, until the yellow light comes on. Can't say enough good things about it. Samantha is growing more and more interested in her baby brother. She talks to him in my belly. In the mornings she will come over in hopes that he will move or kick and says "wake up little man! it's your sister, Samantha." Melts my heart. She is so excited for him to arrive. She also likes to confirm that everyone was born and she knows that she was born in the hospital. She tells me this repeatedly throughout the day. She has hit a bit of a whining phase, which I'm not going to lie, drives me nuts. This weekend, as I was enjoying my Michael Buble Ave Maria and other Christmas music, I found myself losing my patience with the whining and scolding Samantha. It takes a special person to realize the absolute ridiculousness of losing your patience with a three year old with the Ave Maria playing in the background. All I can do is shake my head sometimes.
Well, that is the update on our end for now. I will keep you posted throughout our adventure next week. In the meantime, enjoy the blessings and joy that the Christmas and Advent season bring. It is a wonderful time of year!
Monday, November 19, 2012
Giving Thanks
Dear Family and Friends,
As you know, at this time last year, we were with Alli in intensive care waiting for her heart surgery and learning about infantile spasms. We have come a long way over this past year and we just wanted to share our gratitude with you, since we can't be with many of you in person.
At Thanksgiving 2012 we are thankful for the following:
The many trips my parents have made here to help us around the house and to keep a sense of "normal" for Samantha
The medical and developmental progress Alli has made over the past year through the tireless efforts of many specialists, therapists, and surgeons.
To be employed and by such people that are so generous and sympathetic to the many unexpected events over the past year
The healthy arrival of baby Millie, or Miwi (as Samantha affectionately refers to her)
The joining of the Stocks to our immediate and extended family and the joy they have brought to Carrie's life
Samantha's strength and resilience in handling aspects of childhood that will be drastically different from her peers and the many laughs she brings to our house on a daily basis
The many sacrifices you have made to help us.
The gift of being able to travel to Raleigh this Thanksgiving to celebrate with our family here.
Finally, we are saddened, but grateful, for the addition of Grandpa Culos, to Alli's many heavenly advocates. We know he looks out for her and believe that he conspires with Grandma Brune to help us on a daily basis. It is hard to see Alli smile and not think of him.
We wish we could be with you to celebrate today, but know how thankful we are to have you in our lives.
With love and gratitude,
The Hakerem's
As you know, at this time last year, we were with Alli in intensive care waiting for her heart surgery and learning about infantile spasms. We have come a long way over this past year and we just wanted to share our gratitude with you, since we can't be with many of you in person.
At Thanksgiving 2012 we are thankful for the following:
The many trips my parents have made here to help us around the house and to keep a sense of "normal" for Samantha
The medical and developmental progress Alli has made over the past year through the tireless efforts of many specialists, therapists, and surgeons.
To be employed and by such people that are so generous and sympathetic to the many unexpected events over the past year
The healthy arrival of baby Millie, or Miwi (as Samantha affectionately refers to her)
The joining of the Stocks to our immediate and extended family and the joy they have brought to Carrie's life
Samantha's strength and resilience in handling aspects of childhood that will be drastically different from her peers and the many laughs she brings to our house on a daily basis
The many sacrifices you have made to help us.
The gift of being able to travel to Raleigh this Thanksgiving to celebrate with our family here.
Finally, we are saddened, but grateful, for the addition of Grandpa Culos, to Alli's many heavenly advocates. We know he looks out for her and believe that he conspires with Grandma Brune to help us on a daily basis. It is hard to see Alli smile and not think of him.
We wish we could be with you to celebrate today, but know how thankful we are to have you in our lives.
With love and gratitude,
The Hakerem's
Monday, November 5, 2012
Hand me downs...
It has been a busy couple of weeks since we were discharged from the hospital. Alli's recovery has been slow, but she is recovering and doing well. We are slowly working her back to bolus feeds to give her stomach a chance to fully heal. She was on a continuous feed while she was in the hospital. This week we are working on feeding her at 75 mL per hour. So she is connected to the feeding pump for roughly 2.5 hours at a time during the day and then off about 1.5 hours in between feedings. Bolus feeds are more ideal than continuous feeds as they mirror a more normal feeding pattern and should help Alli to recognize hunger. So, the ultimate goal is to get her to four meal times per day and work on oral motor/feeding therapy at times when she should start to recognize hunger.
I am starting a list of "inventions" as a result of our journey with Alli. So far I have "invented" a special sock to keep her pulse ox sensor on her foot - this consisted of cutting the heel out of an already existing sock. Today, after an annoying phone call with the medical supply company (they are genuinely nice, but I could do without having to talk to them on a monthly basis), I decided that there needs to be an online ordering system for medical supplies that connects with the insurance company so I can go online and quickly input what I need for the month, know what insurance allows, and make an informed decision about whether we want to come out of pocket for additional supplies. Seriously, there is no online system for this. Should be pretty easy to establish. My next million dollar idea is to design a multidisciplinary playmat for children with special needs that are not infants. It will incorporate sensory items and the overhead toys will be high enough to reach so that they don't hang out in the child's face. I am accepting applications for construction of said mat. If we hit it big, there could be royalties involved.
It suddenly became fall while we were in the hospital. The weather is cooler and so comes the change in wardrobe for the girls. For whatever reason, the change to 12/18 month clothes for Alli has unearthed a wide range of emotions. Kind of silly, but true. When Alli was in infant clothes I didn't necessarily equate her hand me downs from Samantha with anything in particular. Though the infant milestones are big ones, they often run together. Rolling over, pincer grasp, lost reflexes, sitting up, all necessary and important developmental milestones, but none that stuck out from a wardrobe perspective. Now, we are in to the clothes Samantha was wearing when she was walking and for whatever reason, those memories come back vividly and the contrast between the two girls becomes much more profound. I can remember where the outfits were worn and watching her toddle around in them. The same outfits we watch Alli try to roll over in. We don't ever really focus on what Alli doesn't do. In fact, I hardly ever stop to think about how old she is. I think that is probably why the clothes are almost haunting. Though we appreciate and celebrate every accomplishment and live with her in her moments and go at her pace, they are a reminder of how profoundly developmentally delayed she is. There is nothing to do about it but be grateful for the grace to accept her as she is, the physicians and therapists helping her in every way they can, and the reese's cups and mini twix left over from Halloween :).
Samantha is getting to a really fun age. She had a great time trick or treating with her friend Gabriela Elisa this past week and had a great third birthday. She had a special early celebration with nanny and grandpa John before they left to go back to Michigan. We were joined by my cousin, Maribeth and my Goddaughter, Anne. Then she had a small party on her actual birthday with her beloved, Meggie (and her fiancé Max), and her friends Caroline, Julia, and their families. She celebrated Minnie Mouse style and loved every cake filled minute of it. Her new favorite phrases include 'yes?' or 'yes or no?' at the end of a question. For example, "Mommy, you want to do a puzzle with me? yes?" or "Daddy, I eat ice cream cake? yes or no?" She's a trip. She is also very determined to do things herself. "I want to do it!" is a phrase we often hear around the house. She has also taken up the art of negotiation, for example, "Mommy, I ride my tricycle?" "Not right now, Samantha. It is raining outside." "Just try, mommy." We hear "just try" a lot when we deny her requests. Often at really funny times. Samantha graduated to her big girl bed a few weeks ago. She loves it and loves to hear about how Jason and my dad built it for her. We have left a few pieces in the room from her ladybug nursery and upgraded to a more mature ladybug theme. We had fun picking everything out together.
New baby boy continues to grow and develop. His 20 week ultrasound looked good and we officially graduated from perinatal care for this pregnancy. We picked out his nursery pattern and everything arrived this past week. We are going with Dr. Seuss ABC's. Now we need to pick the wall color and furniture. We have started to debate names. Per usual, we will wait until the very last minute to make a decision and it is going to be a tough one. We like a lot of boy names.
Jason and I are doing well. I started contract work with Deloitte last week. It was sad to say goodbye to my new friends at UPS, but is always so nice to see familiar faces back at the firm. Plus, I have been missing the Monday and Tuesday noodle bowls from the 191 bistro. They make my week.
Ok - this post has been all over the place. Enough for tonight. I think all of the political commentary and iterations of the electoral map have rendered my brain useless.
Tuesday, October 16, 2012
The road to recovery...
Alli had a good night in cicu. They had her oxygen weaned down to 2 liters by the time I arrived for morning rounds. Her morning chest X-ray looked worse than yesterday and shows a fair amount of fluid accumulating on her lungs. They are treating that with lasix.
Her sats have been in the 90s all morning and she is currently down to a half liter of oxygen. They have started her feeds as of this morning. She is currently getting 10 mL per hour and they will increase by 10 every eight hours until they get to 30 mL per hour. She has been pretty groggy and sleepy today, which I expected given yesterday's activities. I am hoping to see her perk up later tonight or by tomorrow. She is due to be transferred to the cardiac step down unit today, pending an available bed. Will update more when we have more information.
So, we transferred to the step down unit as planned yesterday. Alli was pretty groggy and sleepy, partially I think from the stress of the procedure and partially from the Tylenol with codeine they gave her for pain. Today she has been somewhat more reactive, but still pretty out of it. I learned how to insert her g-tube in case of emergency. We had a brief visit with one of our favorite PTs at Egleston. Alli also had a short echocardiogram to check her heart function as compared to her last echocardiogram. There were no remarkable differences between the two. We are looking forward to some more of her personality coming out tomorrow. Everyone else is doing well. Samantha has been entertaining my parents and is off painting pumpkins this afternoon with one of her gal pals from school and Megan, our nanny. Jason and I are splitting shifts at the hospital, but look forward to getting everyone back under one roof.
Today has been a quiet day. We went up on Alli's seizure medicine yesterday, which usually makes her pretty sleepy. We did play a little throughout the afternoon. Nanny and Grandpa brought her some of her favorite toys from home. Attached is a picture of her stretching out. The other picture is of her g-tube button...for those who are curious about what it looks like.
Her sats have been in the 90s all morning and she is currently down to a half liter of oxygen. They have started her feeds as of this morning. She is currently getting 10 mL per hour and they will increase by 10 every eight hours until they get to 30 mL per hour. She has been pretty groggy and sleepy today, which I expected given yesterday's activities. I am hoping to see her perk up later tonight or by tomorrow. She is due to be transferred to the cardiac step down unit today, pending an available bed. Will update more when we have more information.
So, we transferred to the step down unit as planned yesterday. Alli was pretty groggy and sleepy, partially I think from the stress of the procedure and partially from the Tylenol with codeine they gave her for pain. Today she has been somewhat more reactive, but still pretty out of it. I learned how to insert her g-tube in case of emergency. We had a brief visit with one of our favorite PTs at Egleston. Alli also had a short echocardiogram to check her heart function as compared to her last echocardiogram. There were no remarkable differences between the two. We are looking forward to some more of her personality coming out tomorrow. Everyone else is doing well. Samantha has been entertaining my parents and is off painting pumpkins this afternoon with one of her gal pals from school and Megan, our nanny. Jason and I are splitting shifts at the hospital, but look forward to getting everyone back under one roof.
Today has been a quiet day. We went up on Alli's seizure medicine yesterday, which usually makes her pretty sleepy. We did play a little throughout the afternoon. Nanny and Grandpa brought her some of her favorite toys from home. Attached is a picture of her stretching out. The other picture is of her g-tube button...for those who are curious about what it looks like.
Monday, October 15, 2012
Surgery Day
Today is the big day! We say goodbye to Alli's ng-tube and adenoids...and hello to a g-tube and hopefully slightly improved oxygen levels. We'll post updates throughout the day. As you can tell from the photo, Alli is very stressed about the situation...
Alli just went back with the anesthesiologists. She will have her adenoidectomy first, followed by the placement of her g-tube. We spoke with both doctors this morning. They both appeared sober and well rested. Dr. Statham was her usual happy and perky self. We should hear an update from Dr. Statham in the next hour.
Alli is out of surgery and in recovery. We are waiting on confirmation of her room location in the cardiac step down unit.
Her adenoidectomy went smoothly. The placement of her g-tube also went well. She will be on fluids for today and then they will slowly transition her to continuous feeds starting tomorrow. In about 6 weeks, they will train us how to insert the tube on our own in the unlikely event that it comes out. Overall management should be easier than her ng tube.
Just a quick update - they are going to monitor Alli in the cardiac intensive care unit. She looks really good, but is having a hard time managing secretions in her throat. Therefore she requires regular suctioning and increased oxygen. We hope it will just be a short stay. We look forward to seeing her as soon as she is settled in.
Alli is settled in cicu. She will spend the night here so they can continue to monitor her oxygen levels. We are trying to keep her as calm and comfortable as possible, as the excitement seems to cause her some discomfort. So far her blanket and purple hippo have been the best medicine. We have princess Sophie on standby for when she wakes up.
Alli just went back with the anesthesiologists. She will have her adenoidectomy first, followed by the placement of her g-tube. We spoke with both doctors this morning. They both appeared sober and well rested. Dr. Statham was her usual happy and perky self. We should hear an update from Dr. Statham in the next hour.
Alli is out of surgery and in recovery. We are waiting on confirmation of her room location in the cardiac step down unit.
Her adenoidectomy went smoothly. The placement of her g-tube also went well. She will be on fluids for today and then they will slowly transition her to continuous feeds starting tomorrow. In about 6 weeks, they will train us how to insert the tube on our own in the unlikely event that it comes out. Overall management should be easier than her ng tube.
Just a quick update - they are going to monitor Alli in the cardiac intensive care unit. She looks really good, but is having a hard time managing secretions in her throat. Therefore she requires regular suctioning and increased oxygen. We hope it will just be a short stay. We look forward to seeing her as soon as she is settled in.
Alli is settled in cicu. She will spend the night here so they can continue to monitor her oxygen levels. We are trying to keep her as calm and comfortable as possible, as the excitement seems to cause her some discomfort. So far her blanket and purple hippo have been the best medicine. We have princess Sophie on standby for when she wakes up.
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