There are 2! 2 were seen! 2 remain! 2 intact stitches were viewed by Dr. Rahbar in Sloane's airway yesterday!!! Exactly what we wanted.....2!
Sloane is 3 weeks post-op and Tuesday was the day for our airway scope with Dr. Rahbar. I will save everyone the details and just simply say....it did not go well at all. The results could not have been more wonderful. Two stitches STILL intact and healing just the way Dr. Rahbar wanted. A huge sigh of relief could be heard throughout the room and actually across the country as my hubby was down south. Ha!
The scope itself was horrible. I am pretty sure that is the word mammie used to describe it to poppie. It was either horrible or terrible. Either way, quite accurate. Sloane was beyond upset, physically aggressive to protect her orifices from him entering them and inconsolable to the point that Dr. Rahbar left the room for her to calm down in between attempts to scope her.
It was the 2nd attempt with 4 adults holding her down that got the job done. Pretty terrible, pretty horrible. Everyone in the room felt badly when all was said and done. There was no choice. We needed to know.....how had her recovery gone, what kind of healing was happening, and were there 2???
And there are 2! Here is where we stand:
Sloane will not see Dr. Rahbar for 6 months to check-in, follow-up, re-group. His words were clear....carry on as we have...not a problem as I THINK Sloane is coughing less when taking in large gulps of liquids. :) He also wanted us to remember this isn't just a cleft issue anymore...it is also an airway issue. We understand as her airway was made tighter. And yes, I do think at times that she is noisier than she had been...usually when she is winded.
We will discontinue her inhaler in a few weeks after her swelling dissipates and any residual secretions have had time to work themselves out. We may bring it back out into rotation for next winter. I'm sure we will discuss at our 6 month check-up.
Sloane collapsed on the ride home which hasn't happened in over a year. She was drained. There was a trip to Toys R Us for a prize ($9.00 baby stroller) and the old faithful cup of watermelon Del's.
One of my dearest friends today said to me...I am so glad this is behind you now. You can enjoy your summer without worrying about any of this.....And that is the truth. I am very relieved our 2nd cleft repair is behind us and looking forward to going back to normal life without an impending surgery looming around us....
Tomorrow is Sloane's last day of her first year of preschool.........OMG!!
Thursday, May 29, 2014
Wednesday, May 14, 2014
One Week Down
One week after our arrival home from Children's from cleft surgery #2, Sloane went to school today. I was on the fence until I was putting her in time out and she said "Momma, I don't think you should do that. Can't hurt my throat." I can not make this shit up!!! It actually rolls out of her mouth!! Many days, my hubby and I shake our heads. We know we are in for it in years to come. Once she said those words to me, I realized it was time for her to go to school and resume our normal schedule.
Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most. I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!
Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.
Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????
I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!
Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most. I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!
Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.
- The first being that Sloane will stay on her inhaler for the next month to help with any residual swelling or secretions in her lungs. We will make an appt. with our pulmonologist for mid-June to discuss the plan moving forward.
- We are having our follow-up scope on Tuesday, May 27th. Dr. Rahbar is going to take a look into Sloane's airway to check out his work. I am sure at that appointment we will talk about next steps for Sloane.
Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????
I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!
Tuesday, May 13, 2014
One Eye Open
Sleeping in a hospital isn't sleeping. It is a sequence of closing your eyes and opening them when beeps occurs, when a nurse is jostles you, and when true silence is heard. Sloane and I made it through the first night after surgery with no alarming events. I was brought right back to our NICU nights with the sounds of the beeps around us and the heart-breaking sights.
One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.
My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.
Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.
Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.
We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!
We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!
Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!
Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....
One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.
My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.
Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.
Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.
We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!
We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!
Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!
Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....
Friday, May 9, 2014
Laryngeal Cleft Surgery #2
No yelling. No running. No jumping. No crying. No coughing. No rough play. Those were Dr. Rahbar's restrictions when he met with us after surgery. Had he met my child? That'll be easy, since I have the most spirited 3 year old in the neighborhood!!!! hahaha So we have prison rules this week here at 1029 (the nickname for our house).
Sloane's surgery went as well as we expected. Ill do a breakdown and back -tracking to get all my followers up to speed.
Monday:
Thankfully, Sloane had eaten like a truck driver on Sunday night so she didn't ask for any food or drink until 9:30am. I explain that Dr. Rahbar didn't want us to eat and that we could only drink apple juice or water. She took it but not without a sass comment and huff about the fact that her nail polish had to come off too and now she couldn't eat. To say the level of stress was high through the am would be accurate. Our phones were buzzing with texts of good luck wishes and love constantly. Sloane's big day had entered into the hearts and minds of those around us.
We loaded the car and we were off. There was only one quick stop to grab mammie and say hi to poppie. Let me just say...thank you above for the dvd player in my truck. It has helped make the ride to Children's much more enjoyable all around!! Sloane watched a movie and we all chatted about misc things on the way up. Noone touched the days events with a 10 foot pole. Once we got to surgical intake area, it was clear that Dr. Rahbar was behind and our 1:15 start time was going to change. As time ticked, Sloane got a bit more quiet and inquisitive. And I questioned again why we were doing this.....oh yes, it is because Sloane still has constant unnecessary secretions in her lungs from aspirations and her lungs aren't able to function at 100%.
Right around 1:00, a familiar face walked in. Jane, the pre-op nurse. It is a bit sick and twisted that we know the pre-op nurses and they know us. That tells me we have had one too many surgical procedures and scopes at Children's. It was so nice to see Jane's face though. A bit of calm came over me. She escorted us into the pre-op area and more and more familiar faces popped up. Comforting on one hand and ridiculous on the other.
Sloane was quiet as time was ticking. She was getting nervous after her johnny was on; asking me: are we done yet?, can we go see mammie now, i saw Dr. Rahbar? momma, can i go give mammie a hug? I kept thinking....my poor child, we haven't even started yet. It was a longer wait than I would have liked and in the past, we have given Sloane walking around privileges while she waits. But on Monday, I knew the parent waiting area had one mammie, one poppie, one nonni and one Shu who were all emotional themselves about the next few hours. So a quick lap around the halls to say hello was out of the question for everyone involved. I was holding on by a blink.
The anesthesiologist came over to chat and yes, we knew each other too. She suggested giving Sloane something orally to sedate her a bit before I did my mask holding duties, but Sloane wasn't having it. It didn't turn Jerry Springer, but Sloane made sure everyone in the OR knew she wasn't into medicine at all! I put on my OR clothes....and off we walked. Sloane was so brave. She walked herself right into the OR, sat in my lap and stayed calm. We played a "can you guess what flavor you are smelling as I held the mask" and after a few minutes, I placed my sleeping child down on the gurney and made my exit. Not before I had my moment with Dr. Rahbar. He looked at me and I looked in his eyes begging him to take care of my baby.
And the wait began.....I made the mistake of saying that I wanted a water. Well, that opened the food conversation. I would have just assumed ate a bag of almonds Au Bon Pain downstairs but Sloane's people wanted more. More like, lets walk to Bertuccis one block away. I was silenced by the thought and out numbered. We had 2 hours so why not...I heard. I decided to keep the peace and go. Mentally, I was sitting in the family waiting area. I am pretty sure Sloane's people put me on the inside of the booth so I wouldn't run. I was trapped in my sit. As soon as I swallowed my last bite in 10 seconds flat, I announced that I was heading back to the hospital. And after a moment all of them decided to join me.
As I knew it would happen, my phone rang. Dr. Rahbar was looking for me. We all power walked back to the 3rd floor and there he was with photos in hand. All I really heard was "Sloane is fine. All went well. She is in ICU." What he did say was that:
he lasered the area,
he put in 2 stitches to close up an opening the size of a tip of a pen,
he would scope her in 2-3 weeks to check the healing,
he wondered if she popped a stitch after her last repair based on what he saw,
he suggested softer foods and a limit on liquids as it is the hardest to swallow,
he thinks she may be noisier in her airway now,
AND he wanted no yelling, no crying, no coughing, no running, no jumping and no rough play.
The moment he walked away....Sloane's people stopped holding it together and let the day's emotions all go.
There was a mad dash up 4 floors to ICU. Sloane wasn't going to the recovery room. She would recover in ICU. A few minutes later, the big game started. My hubby and I walked around the corner and I heard her. Sloane was wailing uncontrollably and I wasn't holding her. WTF!!!! I rushed in and took my baby from the nurse's arms. She was inconsolable and I was heart broken. We were sitting in the chair like the days in the NICU. Sloane had a hard time coming out of anesthesia. Harder than they like so in walked the critical care doctors to access. Super duper!! Within a few hours, she was settled down and he hunkered down into our new home for the night. Dinner was a Popsicle, dessert was another Popsicle and the late night treat was a Popsicle. Plenty of time spent with her people and even some tv shows. Well beyond night night time, my hubby left for the hotel and climbed into Sloane's bed. The closer I was to her, the more acceptable the day felt.
To be continued....................
Sloane's surgery went as well as we expected. Ill do a breakdown and back -tracking to get all my followers up to speed.
Monday:
Thankfully, Sloane had eaten like a truck driver on Sunday night so she didn't ask for any food or drink until 9:30am. I explain that Dr. Rahbar didn't want us to eat and that we could only drink apple juice or water. She took it but not without a sass comment and huff about the fact that her nail polish had to come off too and now she couldn't eat. To say the level of stress was high through the am would be accurate. Our phones were buzzing with texts of good luck wishes and love constantly. Sloane's big day had entered into the hearts and minds of those around us.
We loaded the car and we were off. There was only one quick stop to grab mammie and say hi to poppie. Let me just say...thank you above for the dvd player in my truck. It has helped make the ride to Children's much more enjoyable all around!! Sloane watched a movie and we all chatted about misc things on the way up. Noone touched the days events with a 10 foot pole. Once we got to surgical intake area, it was clear that Dr. Rahbar was behind and our 1:15 start time was going to change. As time ticked, Sloane got a bit more quiet and inquisitive. And I questioned again why we were doing this.....oh yes, it is because Sloane still has constant unnecessary secretions in her lungs from aspirations and her lungs aren't able to function at 100%.
Right around 1:00, a familiar face walked in. Jane, the pre-op nurse. It is a bit sick and twisted that we know the pre-op nurses and they know us. That tells me we have had one too many surgical procedures and scopes at Children's. It was so nice to see Jane's face though. A bit of calm came over me. She escorted us into the pre-op area and more and more familiar faces popped up. Comforting on one hand and ridiculous on the other.
Sloane was quiet as time was ticking. She was getting nervous after her johnny was on; asking me: are we done yet?, can we go see mammie now, i saw Dr. Rahbar? momma, can i go give mammie a hug? I kept thinking....my poor child, we haven't even started yet. It was a longer wait than I would have liked and in the past, we have given Sloane walking around privileges while she waits. But on Monday, I knew the parent waiting area had one mammie, one poppie, one nonni and one Shu who were all emotional themselves about the next few hours. So a quick lap around the halls to say hello was out of the question for everyone involved. I was holding on by a blink.
The anesthesiologist came over to chat and yes, we knew each other too. She suggested giving Sloane something orally to sedate her a bit before I did my mask holding duties, but Sloane wasn't having it. It didn't turn Jerry Springer, but Sloane made sure everyone in the OR knew she wasn't into medicine at all! I put on my OR clothes....and off we walked. Sloane was so brave. She walked herself right into the OR, sat in my lap and stayed calm. We played a "can you guess what flavor you are smelling as I held the mask" and after a few minutes, I placed my sleeping child down on the gurney and made my exit. Not before I had my moment with Dr. Rahbar. He looked at me and I looked in his eyes begging him to take care of my baby.
And the wait began.....I made the mistake of saying that I wanted a water. Well, that opened the food conversation. I would have just assumed ate a bag of almonds Au Bon Pain downstairs but Sloane's people wanted more. More like, lets walk to Bertuccis one block away. I was silenced by the thought and out numbered. We had 2 hours so why not...I heard. I decided to keep the peace and go. Mentally, I was sitting in the family waiting area. I am pretty sure Sloane's people put me on the inside of the booth so I wouldn't run. I was trapped in my sit. As soon as I swallowed my last bite in 10 seconds flat, I announced that I was heading back to the hospital. And after a moment all of them decided to join me.
As I knew it would happen, my phone rang. Dr. Rahbar was looking for me. We all power walked back to the 3rd floor and there he was with photos in hand. All I really heard was "Sloane is fine. All went well. She is in ICU." What he did say was that:
he lasered the area,
he put in 2 stitches to close up an opening the size of a tip of a pen,
he would scope her in 2-3 weeks to check the healing,
he wondered if she popped a stitch after her last repair based on what he saw,
he suggested softer foods and a limit on liquids as it is the hardest to swallow,
he thinks she may be noisier in her airway now,
AND he wanted no yelling, no crying, no coughing, no running, no jumping and no rough play.
The moment he walked away....Sloane's people stopped holding it together and let the day's emotions all go.
There was a mad dash up 4 floors to ICU. Sloane wasn't going to the recovery room. She would recover in ICU. A few minutes later, the big game started. My hubby and I walked around the corner and I heard her. Sloane was wailing uncontrollably and I wasn't holding her. WTF!!!! I rushed in and took my baby from the nurse's arms. She was inconsolable and I was heart broken. We were sitting in the chair like the days in the NICU. Sloane had a hard time coming out of anesthesia. Harder than they like so in walked the critical care doctors to access. Super duper!! Within a few hours, she was settled down and he hunkered down into our new home for the night. Dinner was a Popsicle, dessert was another Popsicle and the late night treat was a Popsicle. Plenty of time spent with her people and even some tv shows. Well beyond night night time, my hubby left for the hotel and climbed into Sloane's bed. The closer I was to her, the more acceptable the day felt.
To be continued....................
Getting Down to Basics
Let's talk Laryngeal Cleft facts:
What is laryngeal cleft?
Laryngeal cleft (fissure of the larynx) is a rare abnormality of the separation between the larynx, or voice box, and the esophagus. It appears 1 in every 10,000 to 20,000 births. It is more frequent in male births with a 5:3 ratio.
When the larynx develops normally it is completely separate from the esophagus, so swallowed foods go directly into the stomach.
A laryngeal cleft creates an opening/gap between the larynx and the esophagus so food and liquid can pass through the larynx into the airway and then lungs. Laryngeal cleft causes swallowing problems. Coughing, gagging, frequent respiratory infections, and chronic lung disease are also symptoms of the disorder.
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| The 4 Laryngeal Cleft Levels Sloane's cleft was a level 2 almost a level 3. Requiring not one, but 2 surgeries over time to close it fully. Surgery one in March 2011 at 9 months of age. Surgery two in May 2014 at 3 years 10 months.  Surgical Pictures from a cleft repair Sloane's cleft surgeries have resembled these photos. Her surgeon lasers the tissue surrounding the cleft and then sutures up the area with dissolvable stitches. Her 2nd surgery on May 5, 2014 required 2 stitches closing up an area the size of a tip of a pen. Her first surgery in March 2011 required 3-4 stitches. |
Sunday, May 4, 2014
It Is A Big Deal
Pre-op was done on Thursday. Check that box! Nothing eventful occurred. Pre-op is always the same. I think we could do it ourselves if they let us.
I found it very funny that the anesthesiologist asked me how I felt about holding the mask over Sloane face to put her to sleep?? Really!?! I thought?? Did you just ask me that??? What I wanted to say in all my North Providence sarcasm was.......I love it. Actually it has been my favorite part of parenting. Watching my child scream and cry while I can do nothing to help her and have to remain composed is very fun. It is as much fun as I had going out with my girlfriends Friday night for drinks!!! SERIOUSLY!!!! I didn't say that no-one panic! I took the high road and said "Well, I have done it before. Its fine. I am her mom. Its my job." I truly think Mammie was proud of my answer :) as she sat beside me. She knows I am not exactly in my best inner self this week and may have said some things that weren't exactly appropriate! LOL
The anesthesiologist did redeem herself when she spoke these words while we discussed Monday's events...."this surgery is a big deal. airway surgeries are a big deal." WHHHAAATTTT?????? I couldn't believe it. Did she just say that???? I looked her in the eyes and said "you have no idea how big this is. Thank you for saying that." Once again, I made Mammie proud. I kept my mouth shut, didn't rattle off my laryngeal cleft journey business and left our appointment with an inner smile. Yes, this is a big deal! This is the biggest deal in my life. This is my child.
I did wonder if the location of Sloane's surgery was adding to my overall concern? Would I be as worked up if it was something more mainstream like tubes in the ears, tonsils, hernia, or a broken limb??? I don't know. I do think the airway, throat, vocal cords, trachea thing steps it up a notch for me. We talked at pre-op about the option that may Sloane come out of surgery intubated. Not ideal, but I understand why this may be an option tomorrow. The area may be swollen from the laser, stitches, shear manipulation of it AND we are closing Sloane's cleft tighter hence making a portion of her airway more narrow. I have seen Sloane intubated before, at 22 days old, after her g-tube surgery. It is not tops on my lists of memories, but it does need to happen. We are prepared. If she has to be intubated, she will be heavily sedated so she wont know. Thank you very much!!
Surgery is scheduled for 1:15 on tomorrow. Not the best time seeing as though Sloane can't eat after midnight but also not the worst either. In the scheme of things, the type of surgery Sloane is having is not nearly as extensive as the surgeries that will happen on Monday in Children's ORs so we understand that our daughter's surgery doesn't take precedence over some others. We will begin our day around 10:30 when we start the ride to Children's. Once there, we know it'll been a mix between hurry up and wait and a whirlwind of events. Surgical check-in is always interesting. Sometimes, I cant believe that I have done check in for a procedure that requires anesthesia 8 times on my almost 4 year old!! It can be surreal. Sloane will be under from start to finish about three or so hours....One thing I know for sure is that it'll be a very quiet 3 hours in the family waiting area for us.
I have all the faith in Dr. Rahbar and his team. He has performed this surgery about 200 times and Sloane will be his 4th or 5th child who has needed a 2nd surgery. This isn't his first rodeo!! Although tomorrow, we will have a moment when I will lock eyes with him in the OR while holding Sloane and beg him to take the best possible care of my child that he is humanly able to do. We knew that tomorrow's 2nd cleft repair was a possibility right back in March of 2011 after her 1st repair. Dr. Rahbar told us when he came out of the OR after closing it up. I didn't hear him say it...ha....but I know for a fact that he did. It has been confirmed by multiple sources. :)
The packing will begin later. I've managed to re-organize my house 100 times, written a bunch of to-do lists and done all the laundry I could so it is time to crack out the over-night bags. I told Sloane that we are having a sleepover at Dr. Rahbars tonight at dinner and she said ..."well, let me go pack." And she did.
We have not told Sloane anything else yet. It'll be a discussion in the morning. Not sure what approach we will take as the kick-off to "the talk" but I am sure the game plan for the next few days will roll out just fine. I think I am most concerned about denying Sloane food all morning at this point. Once we are at the hospital, new concerns will come to the forefront. I have some new Doc McStuffins and Sofia the First pjs waiting for our over-nights! And a few new treats...not that Sloane needs a thing. She needs not for another toy!!!
The outpouring of care, concern, prayers, and love today has been very sweet. I received lots of phone calls, texts and emails from our closest friends and even more from people we didn't know knew tomorrow was so monumental to us. Very touching. The sentiments are all the same....everything will be fine! And we know if our hearts that it will be but that doesn't make it an easier as parents. Sloane's journey has been lived and breathed for roughly over 1200 days in our home, in our hearts, in our lives. Tomorrow is in fact a big deal...
I found it very funny that the anesthesiologist asked me how I felt about holding the mask over Sloane face to put her to sleep?? Really!?! I thought?? Did you just ask me that??? What I wanted to say in all my North Providence sarcasm was.......I love it. Actually it has been my favorite part of parenting. Watching my child scream and cry while I can do nothing to help her and have to remain composed is very fun. It is as much fun as I had going out with my girlfriends Friday night for drinks!!! SERIOUSLY!!!! I didn't say that no-one panic! I took the high road and said "Well, I have done it before. Its fine. I am her mom. Its my job." I truly think Mammie was proud of my answer :) as she sat beside me. She knows I am not exactly in my best inner self this week and may have said some things that weren't exactly appropriate! LOL
The anesthesiologist did redeem herself when she spoke these words while we discussed Monday's events...."this surgery is a big deal. airway surgeries are a big deal." WHHHAAATTTT?????? I couldn't believe it. Did she just say that???? I looked her in the eyes and said "you have no idea how big this is. Thank you for saying that." Once again, I made Mammie proud. I kept my mouth shut, didn't rattle off my laryngeal cleft journey business and left our appointment with an inner smile. Yes, this is a big deal! This is the biggest deal in my life. This is my child.
I did wonder if the location of Sloane's surgery was adding to my overall concern? Would I be as worked up if it was something more mainstream like tubes in the ears, tonsils, hernia, or a broken limb??? I don't know. I do think the airway, throat, vocal cords, trachea thing steps it up a notch for me. We talked at pre-op about the option that may Sloane come out of surgery intubated. Not ideal, but I understand why this may be an option tomorrow. The area may be swollen from the laser, stitches, shear manipulation of it AND we are closing Sloane's cleft tighter hence making a portion of her airway more narrow. I have seen Sloane intubated before, at 22 days old, after her g-tube surgery. It is not tops on my lists of memories, but it does need to happen. We are prepared. If she has to be intubated, she will be heavily sedated so she wont know. Thank you very much!!
Surgery is scheduled for 1:15 on tomorrow. Not the best time seeing as though Sloane can't eat after midnight but also not the worst either. In the scheme of things, the type of surgery Sloane is having is not nearly as extensive as the surgeries that will happen on Monday in Children's ORs so we understand that our daughter's surgery doesn't take precedence over some others. We will begin our day around 10:30 when we start the ride to Children's. Once there, we know it'll been a mix between hurry up and wait and a whirlwind of events. Surgical check-in is always interesting. Sometimes, I cant believe that I have done check in for a procedure that requires anesthesia 8 times on my almost 4 year old!! It can be surreal. Sloane will be under from start to finish about three or so hours....One thing I know for sure is that it'll be a very quiet 3 hours in the family waiting area for us.
I have all the faith in Dr. Rahbar and his team. He has performed this surgery about 200 times and Sloane will be his 4th or 5th child who has needed a 2nd surgery. This isn't his first rodeo!! Although tomorrow, we will have a moment when I will lock eyes with him in the OR while holding Sloane and beg him to take the best possible care of my child that he is humanly able to do. We knew that tomorrow's 2nd cleft repair was a possibility right back in March of 2011 after her 1st repair. Dr. Rahbar told us when he came out of the OR after closing it up. I didn't hear him say it...ha....but I know for a fact that he did. It has been confirmed by multiple sources. :)
The packing will begin later. I've managed to re-organize my house 100 times, written a bunch of to-do lists and done all the laundry I could so it is time to crack out the over-night bags. I told Sloane that we are having a sleepover at Dr. Rahbars tonight at dinner and she said ..."well, let me go pack." And she did.
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| We have 2 pairs of pjs, 3 pairs of undies, socks, a pretend flat iron and curling iron, beaded necklaces, a baseball hat, a hand mirror, a singing star, a few furry friends and the ever dependable lovey! Not a bad packing job at all!!! |
We have not told Sloane anything else yet. It'll be a discussion in the morning. Not sure what approach we will take as the kick-off to "the talk" but I am sure the game plan for the next few days will roll out just fine. I think I am most concerned about denying Sloane food all morning at this point. Once we are at the hospital, new concerns will come to the forefront. I have some new Doc McStuffins and Sofia the First pjs waiting for our over-nights! And a few new treats...not that Sloane needs a thing. She needs not for another toy!!!
The outpouring of care, concern, prayers, and love today has been very sweet. I received lots of phone calls, texts and emails from our closest friends and even more from people we didn't know knew tomorrow was so monumental to us. Very touching. The sentiments are all the same....everything will be fine! And we know if our hearts that it will be but that doesn't make it an easier as parents. Sloane's journey has been lived and breathed for roughly over 1200 days in our home, in our hearts, in our lives. Tomorrow is in fact a big deal...
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