Thursday, June 21, 2012
Four Weeks Post Op
Here are a few pictures of Alex one month after surgery. The stitches on both sides of the tongue are slow to dissolve, but the swelling continues to go down! Alex has been doing great and has shown so much improvement after surgery!
Friday, June 1, 2012
Two Weeks Post Op
Here are a few pictures of Alex two weeks after surgery. He has been drinking out of his normal bottle since Tuesday and he is back to his normal eating and sleep schedule. He still has several stitches in the tongue - especially along the sides, but the swelling has decreased significantly.
Thursday, May 24, 2012
Tuesday, May 22, 2012
Day 5 Post Op
It's finally Tuesday!! I have been waiting for this day before we even arrived in St. Louis ten days ago. We were discharged from the hospital this morning around 10:00am, perfect timing to enable us to return the rental car and have lunch at the airport before we board our 2:00pm flight back to Denver.
Alex has been feeling great. He is already back to putting everything in his mouth as you can see in these photos. Luckily, the fries he kept grabbing off of my dad's plate did not have salt on them - ouch! ... And he will have to wait MANY more years before he is allowed to have his first glass of wine :)
Alex has made huge improvements in his ability to eat solid foods. Drinking out of a bottle is still a challenge, but I know things will start to improve once the swelling in his tongue starts to go down.
Alex has been feeling great. He is already back to putting everything in his mouth as you can see in these photos. Luckily, the fries he kept grabbing off of my dad's plate did not have salt on them - ouch! ... And he will have to wait MANY more years before he is allowed to have his first glass of wine :)
Alex has made huge improvements in his ability to eat solid foods. Drinking out of a bottle is still a challenge, but I know things will start to improve once the swelling in his tongue starts to go down.
Monday, May 21, 2012
Day 4 Post Op
Sunday, May 20, 2012
Day 3 Post Op
Alex was placed on a nasal canula last night to provide continuous oxygen while he slept - this helped reduce the number of desaturations he had throughout the night. He was started on bolus feedings, but he had a high residual from his midnight feeding (meaning that he wasn't digesting the formula) so he was placed back on continual feeds (small amounts of formula that are continually pushed through the feeding tube). His digestion started to improve in the early morning and around 8:00am DeAnn stopped by and agreed to let us try bottle feeding.
For the first feedings you need to hold your little one very firm so that they can't wiggle away. With all of the stitches and swelling in the tongue, the bottle feels weird to the touch and many babies don't like the sensation of the bottle in their mouth. Alex didn't seem to be in pain, he has been chewing on his blanket and hand since yesterday. I won't lie. For the first few feedings it feels like baby torture. Like water-boarding your infant. Alex screamed and tried to thrash around... but eventually they calm down and are so hungry that they give in and drink.
DeAnn was great about explaining how to hold him and providing techniques for getting him to swallow. She provides a special kind of bottle that you squeeze to provide small amounts of formula to the back of the throat, which is great for those kiddos that don't want to (or can't figure out how to) suck using their swollen tongue. Alex resisted initially, but he drank two ounces of formula. We will be feeding him 2-3 ounces every two hours throughout the day.
Saturday, May 19, 2012
Day 2 Post Op
This is the day that most kids are moved from the PICU, the pain medicine is weaned to Tylenol only, and they try to start bottle feeds.
Unfortunately, due to Alex's breathing, they are taking things slow and we are staying in the PICU another night. They will not be trying bottle feeds until tomorrow. The amount of formula Alex is getting by tube feeds continues to increase (he started at 5 ml/hour, to 10 ml/hour and is now at 20 ml/hour) and he was more alert today. He played with some toys and cuddled with me in the recliner most of the day. They were able to take out the nasal trumpet which made Alex feel much better!
Friday, May 18, 2012
Day 1 Post Op
Nasal Trumpet |
Expect bleeding and swelling during the first night and day after surgery.
During the first night after surgery, they give Tylenol with codeine orally by feeding tube every four hours and morphine by IV only as needed if the baby seems to be in a lot of pain.
Alex has opened his eyes several times and it's hard to tell if he is in pain or if he is just upset because he has tubes strapped to his face and restraints on his arms and legs.
Nasal Trumpet with Oxygen |
Alex had a few episodes this morning where he stopped breathing for a few moments, turning blue. The nurses and respiratory staff were able to get secretions out of his nose and throat, and the first episode he had was likely due to the central apnea identified during his sleep study.
Alex had a nasal trumpet inserted in recovery. This is a tube that goes up the nose and down into the throat and helps keep the swollen tongue from blocking the airway. Originally, they were going to take this out during the night, but because it makes it easier to suction him, they left it in today.
Later in the afternoon, around 3:00, they started giving him formula by feeding tube (the yellow tube in his nose). Alex was awake and calm. He flirted a little with the nurse and sat up in bed wanting to play. This lasted about 10 minutes before he wore himself out and went back to sleep!
Thursday, May 17, 2012
Recovery
"Buck" was so happy to see Alex in recovery! |
Arm restraints, so little ones don't pull out their IV/feeding tube |
After about 15 minutes, we were transferred to the PICU. The rooms are large and have an attached bath and a fold out couch and recliner for parents that want to stay in the room. I'll be staying with Alex until he is discharged. My dad will continue to stay at the Haven House until we return home next week.
We found out that there is also a Ronald McDonald House on the Mercy Medical Center campus. It was built a little over a year ago, so many of the medical providers here don't think to recommend this as another option for families traveling to St. Louis. It's much cheaper to stay at this facility, too. Just something to keep in mind for those parents thinking about coming to St. Louis in the future!
THE BIG DAY
Today's the day... surgery is scheduled for 2:00pm this afternoon.
The last bottle with formula was at 6:00am. Alex can have Pedialyte or water until 10:00am and nothing to eat after 10:00. I'm hoping we can get him to sleep until we need to be at the surgery center at 1:00pm.
Alex did great this morning. He slept and played most of the morning and only fussed due to hunger for a few minutes before we arrived at the surgery center. We spent most of our time at Conway Park -- a park within walking distance of Mercy (under I-270). If you have other children with you, or if you're like us and have some time to fill before surgery, this is a beautiful park with a playground and walking trails around a central pond.
We arrived at the surgery center at 12:45 and they brought us back to the pre-op room at 1:00. We met with the urologist's nurse, Deann (Dr. Marsh's nurse) and the anesthesiologist. We filled out paperwork, discussed his medical history, dressed Alex in his hospital gown and gave him kisses before the nurse walked him down the hall for surgery at 1:30pm.
They use a nitrogen gas to put the little ones to sleep before starting the IV, so they are not in any pain before the procedure starts. Both procedures will take up to 4 1/2 hours (270 minutes). The tongue-reduction surgery only takes 1-1.5 hours to complete.
Dr. Marsh does a "W" incision where he trims the sides of the tongue and takes a wedge piece out of the tip (looks like a snake tongue). He then sews the two front tips together. I'll include a copy of the drawing that Dr. Marsh made for us when I have a chance to scan it.
We stayed in the pre-op room until Alex's surgery was underway and then we were sent to the main waiting area. We currently have a pager and a confidential number assigned to Alex so we can monitor his progress within the waiting area.
They use a nitrogen gas to put the little ones to sleep before starting the IV, so they are not in any pain before the procedure starts. Both procedures will take up to 4 1/2 hours (270 minutes). The tongue-reduction surgery only takes 1-1.5 hours to complete.
Dr. Marsh does a "W" incision where he trims the sides of the tongue and takes a wedge piece out of the tip (looks like a snake tongue). He then sews the two front tips together. I'll include a copy of the drawing that Dr. Marsh made for us when I have a chance to scan it.
We stayed in the pre-op room until Alex's surgery was underway and then we were sent to the main waiting area. We currently have a pager and a confidential number assigned to Alex so we can monitor his progress within the waiting area.
It's now 3:13pm and Dr. Marsh just came by to tell us that his portion of the surgery is over. Dr. Palagiri, the urologist, is now starting his portion and so far Alex is doing great!!
Wednesday, May 16, 2012
Exploring St. Louis
Consulting with the Docs
The meeting with the urologist on Monday was great. Nice guy, very knowledgeable, great bedside manner. He drew pictures of the procedure on large sheets of butcher paper taped to the wall, which was a little weird. I now have copies of penis drawings rolled up and stored in the rental car. I'm not quite sure what to do with this, save it for Alex's baby book? Awkward.
Yesterday was a long, emotionally-charged day.
We met with the speech pathologist first. She was fantastic and reassuring; she informed us that Alex was meeting all of his developmental milestones. She was confident that if Alex had the surgery now, his feeding would improve and his speech would not be impacted (noting that children with or without TR surgery may need to see a speech therapist during their early years - we will continue to consult with a speech pathologist until Alex is in elementary school).
Feeling good, really good. Confident that I'm doing the right thing for my son and everything is going to turn out great.
We quickly grabbed lunch and made our way to Dr. Marsh's office. First we met with Kristen Burr, Dr. Marsh's assistant. She helped coordinate our visit and if you make the decision to consult with Dr. Marsh you will quickly learn to appreciate Kristen's responsiveness and organization! When Dr. Marsh entered the room, his first comment was, "I don't know that we will be able to perform surgery". I was devastated. We worked so hard to get to this point only to be told "no" so quickly? He was concerned about Alex's breathing. Our pediatrician calls Alex "snarky" - he always breathes in a raspy, congested manner. I just assumed this was normal for children with BWS. Apparently this is not the case. Dr. Marsh was very concerned that Alex would end up needing a tracheotomy. Ugh! A trach!? The whole reason we were in St. Louis was to avoid getting a trach. After explaining Alex's history, Dr. Marsh agreed to have the ENT (our next appointment) determine whether or not Alex would be a safe candidate for surgery.
Feeling like crap. I'm the worst mom EVER. We are going to return home with either no improvement in Alex's condition or he is going to be stuck in a St. Louis hospital for 6-8 weeks with a hole in his throat.
The ENT scoped Alex's nose and throat and listed to his history. He said he felt comfortable allowing the surgery to continue as scheduled pending the results of a chest x-ray.
Okay, good, because I wasn't going to allow Alex to have surgery without knowing we had done everything we could to make sure he would be safe during and after surgery.
We also found out that Alex is going to need to have his tonsils and adenoids removed when he's older. Awesome, yet another hospital visit to look forward to! Poor boy.
We immediately went down to radiology and had the chest x-ray performed and were told to return home to wait for the results. I called Dr. Marsh's office this morning and the x-rays looked good. We are scheduled for surgery tomorrow afternoon.
I'm usually a very optimistic person... but now instead of feeling confident and ready to face this procedure, I'm terrified that something is going to go wrong. I just keep reminding myself to be positive. I have to trust that we are doing what's best for Alex. He is strong and resilient and I can't wait to see him smile after surgery, knowing that the worst is behind us!
We met with the speech pathologist first. She was fantastic and reassuring; she informed us that Alex was meeting all of his developmental milestones. She was confident that if Alex had the surgery now, his feeding would improve and his speech would not be impacted (noting that children with or without TR surgery may need to see a speech therapist during their early years - we will continue to consult with a speech pathologist until Alex is in elementary school).
Feeling good, really good. Confident that I'm doing the right thing for my son and everything is going to turn out great.
We quickly grabbed lunch and made our way to Dr. Marsh's office. First we met with Kristen Burr, Dr. Marsh's assistant. She helped coordinate our visit and if you make the decision to consult with Dr. Marsh you will quickly learn to appreciate Kristen's responsiveness and organization! When Dr. Marsh entered the room, his first comment was, "I don't know that we will be able to perform surgery". I was devastated. We worked so hard to get to this point only to be told "no" so quickly? He was concerned about Alex's breathing. Our pediatrician calls Alex "snarky" - he always breathes in a raspy, congested manner. I just assumed this was normal for children with BWS. Apparently this is not the case. Dr. Marsh was very concerned that Alex would end up needing a tracheotomy. Ugh! A trach!? The whole reason we were in St. Louis was to avoid getting a trach. After explaining Alex's history, Dr. Marsh agreed to have the ENT (our next appointment) determine whether or not Alex would be a safe candidate for surgery.
Feeling like crap. I'm the worst mom EVER. We are going to return home with either no improvement in Alex's condition or he is going to be stuck in a St. Louis hospital for 6-8 weeks with a hole in his throat.
The ENT scoped Alex's nose and throat and listed to his history. He said he felt comfortable allowing the surgery to continue as scheduled pending the results of a chest x-ray.
Okay, good, because I wasn't going to allow Alex to have surgery without knowing we had done everything we could to make sure he would be safe during and after surgery.
We also found out that Alex is going to need to have his tonsils and adenoids removed when he's older. Awesome, yet another hospital visit to look forward to! Poor boy.
We immediately went down to radiology and had the chest x-ray performed and were told to return home to wait for the results. I called Dr. Marsh's office this morning and the x-rays looked good. We are scheduled for surgery tomorrow afternoon.
I'm usually a very optimistic person... but now instead of feeling confident and ready to face this procedure, I'm terrified that something is going to go wrong. I just keep reminding myself to be positive. I have to trust that we are doing what's best for Alex. He is strong and resilient and I can't wait to see him smile after surgery, knowing that the worst is behind us!
Tuesday, May 15, 2012
Our Itenarary
My husband started a new job in March, so when we found out that Alex was approved for a consultation with Dr. Marsh in May, we decided that it would be best to have my husband stay at home with our 2 1/2 year old daughter and that I would travel with Alex and my dad (who recently retired) out to St. Louis.
Sunday, May 13: Fly from Denver to St. Louis
Monday, May 14: Urology Appointment
Tuesday, May 15: Speech Pathology, Dr. Marsh and ENT Appointments
Wednesday, May 16: FREE DAY*
Thursday, May 17: Surgery
Friday, May 18: Day 1 Post Op
Saturday, May 19: Day 2 Post Op
Sunday, May 20: Day 3 Post Op
Monday, May 21: Day 4 Post Op
Tuesday, May 22: Day 5 Post Op, Return Home
*Surgeries are scheduled on Wednesdays and Thursdays, ours was moved to Thursday to accommodate the Urologist's schedule.
Monday, May 14, 2012
Haven House
The Haven House has been a fantastic place to stay. It's clean, the people are friendly and there is a lot of space for families to spread out and relax in between hospital visits and doctor appointments.
Breakfast and dinner is provided, every room has a private bath, and if you get the upgraded room, you also have a mini-fridge, microwave and television in your room for $50.00 a night. If you are traveling with an infant, they will also provide you with a pack and play.
They also have a laundry facility on site - detergent is provided - which is very convenient when traveling with an infant. This also enabled us to pack light.
The facility is located in a safe neighborhood and it really puts your mind at ease knowing that everyone around you understands your circumstances (which is great when you are consoling a crying infant in the middle of the night!)
The location is also convenient - there is a grocery store, Walgreens and several places to eat within walking distance.
Breakfast and dinner is provided, every room has a private bath, and if you get the upgraded room, you also have a mini-fridge, microwave and television in your room for $50.00 a night. If you are traveling with an infant, they will also provide you with a pack and play.
They also have a laundry facility on site - detergent is provided - which is very convenient when traveling with an infant. This also enabled us to pack light.
The facility is located in a safe neighborhood and it really puts your mind at ease knowing that everyone around you understands your circumstances (which is great when you are consoling a crying infant in the middle of the night!)
The location is also convenient - there is a grocery store, Walgreens and several places to eat within walking distance.
Sunday, May 13, 2012
St. Louis Bound
Our flight from Denver to St Louis went better than I could have hoped! Alex started fussing before take off, but fell asleep quickly and slept during the two hour flight in my dad's arms. Because it's such a short flight, we didn't buy a seat for Alex, we just held him on our lap.
We checked in one suitcase and the car seat, and I used the diaper bag as my carry-on (which I also used to store my laptop). I also took the stroller and checked this at the gate before boarding the plane.
Because the doctor appointments were so spread out, and because we had a full day on Wednesday with nothing to do but sightsee, we decided to rent a car.
The airport is within 20 minutes of Haven House and many other hotels near the medical center. If you want to save money, you can take a shuttle or taxi which will cost you approximately $30.00. The Haven House and many nearby hotels provide shuttle service to and from St. John's Mercy Medical Center.
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