It has been a very full week...full of ups and downs.
Our days have included such difficulty for Isla and, in the same day, joyful victories.
This past week Isla has seemed to be progressing well in recovery from her 2nd VEPTR placement. It is really painful, yet each day she has gained new strength.
Isla faced a very high heart rate for the first few days that was puzzling, but by day 4, it started to decrease closer to normal and as of yesterday, stayed normal all day! Thankful!
Something that we did not expect was to face feeding/swallowing issues for our sweet girl.
with each passing day, Isla's struggle to swallow became more apparent.
She seemed to be in a lot of pain. We of course knew her throat could be irritated from being intubated in surgery, but we could see it was something more than that.
On Friday night (9/14), we were feeding Isla her dinner and she was really struggling and started coughing and gagging so much, two nurses and our NP came into the room and got to see how Isla's difficulty in eating had progressed to an unsafe level. There was concern of aspiration, so Isla was taken off oral food and meds. Saturday morning (9/15) Isla had an evaluation with Speech. This verified all of our concerns and was so sad to see...Isla had gotten to a point where even the tiniest amount of puree in her mouth, she could not swallow. she was so upset. We could tell she was hungry, yet once the food was in her mouth, she struggled. We call Isla our "little foodie" because of her LOVE for food! so seeing her so sad from this was heartbreaking.
The gal from Speech was concerned and suggested we see ENT department.
Soon after the eating eval, ENT showed up to Isla's room to use a probe to see down Isla's throat.
This was so traumatizing for Isla, yet we were so thankful for the seeking of answers.
ENT found that Isla had left vocal chord paralysis. This can mean so many different things that range from simple (our hope!!) to more severe.
All the teams of doctors were consulting together to try to figure out the best plan for Isla.
Our hope is that, due to being intubated during surgery and her having a strong torticollis, there was a lot of pressure from the intubation on her left vocal chords and caused temporary paralysis.
Tomorrow, Isla will have a swallow study to help determine more into the situation.
Please pray! This will not be an easy study - we admittedly do not see it going well in our minds...but we are not going to count on that! We hope and pray they can get a really clear reading for our girl!
A huge blessing today (Sunday 9/16) ...Speech came by again to attempt a feeding. Thank you all who were praying and thinking of our girl!
It was incredible...Isla was able to eat about 1oz of puree!!! We fed her very miniscule amounts at a time, she was able to swish it around in her mouth and eventually swallow!
She seemed calm and after about an ounce, let us know she was all done. Big victory from the day prior! Because she did so well, she was cleared to have another ounce of puree at dinner time!
The swallow study will be tomorrow...but we are so very thankful she was able to get a small amount of food in her system today! praying for clear results tomorrow.
These days have included such highs and lows for Isla. Moments where she is so sad and seems so unmotivated and scared, to moments of such joy where we can see her heart is happy and she feels calm. There are times in our day when it feels very heavy and difficult and then there is a complete turn around just a couple of hours later. What a blessing to have joy peek through the difficult times...for a day to never be without glimpses of hope and victory!
As of two days ago, even through the difficulties of not being able to eat, Isla was able to stand, but at a 90 degree angle, then next day she stood straight!
Today she did not want to stand or sit up most of the day, but literally all of the sudden, she stood right up and walked!!! She was assisted for protection, but this girl was putting all the weight on both legs and walking!!! So incredible!
Each day we see our girl's brightness returning. Zeke is a source of light, fun, smiles, and motivation for Isla.
Our days have included such difficulty for Isla and, in the same day, joyful victories.
This past week Isla has seemed to be progressing well in recovery from her 2nd VEPTR placement. It is really painful, yet each day she has gained new strength.
Isla faced a very high heart rate for the first few days that was puzzling, but by day 4, it started to decrease closer to normal and as of yesterday, stayed normal all day! Thankful!
Something that we did not expect was to face feeding/swallowing issues for our sweet girl.
with each passing day, Isla's struggle to swallow became more apparent.
She seemed to be in a lot of pain. We of course knew her throat could be irritated from being intubated in surgery, but we could see it was something more than that.
On Friday night (9/14), we were feeding Isla her dinner and she was really struggling and started coughing and gagging so much, two nurses and our NP came into the room and got to see how Isla's difficulty in eating had progressed to an unsafe level. There was concern of aspiration, so Isla was taken off oral food and meds. Saturday morning (9/15) Isla had an evaluation with Speech. This verified all of our concerns and was so sad to see...Isla had gotten to a point where even the tiniest amount of puree in her mouth, she could not swallow. she was so upset. We could tell she was hungry, yet once the food was in her mouth, she struggled. We call Isla our "little foodie" because of her LOVE for food! so seeing her so sad from this was heartbreaking.
The gal from Speech was concerned and suggested we see ENT department.
Soon after the eating eval, ENT showed up to Isla's room to use a probe to see down Isla's throat.
This was so traumatizing for Isla, yet we were so thankful for the seeking of answers.
ENT found that Isla had left vocal chord paralysis. This can mean so many different things that range from simple (our hope!!) to more severe.
All the teams of doctors were consulting together to try to figure out the best plan for Isla.
Our hope is that, due to being intubated during surgery and her having a strong torticollis, there was a lot of pressure from the intubation on her left vocal chords and caused temporary paralysis.
Tomorrow, Isla will have a swallow study to help determine more into the situation.
Please pray! This will not be an easy study - we admittedly do not see it going well in our minds...but we are not going to count on that! We hope and pray they can get a really clear reading for our girl!
A huge blessing today (Sunday 9/16) ...Speech came by again to attempt a feeding. Thank you all who were praying and thinking of our girl!
It was incredible...Isla was able to eat about 1oz of puree!!! We fed her very miniscule amounts at a time, she was able to swish it around in her mouth and eventually swallow!
She seemed calm and after about an ounce, let us know she was all done. Big victory from the day prior! Because she did so well, she was cleared to have another ounce of puree at dinner time!
The swallow study will be tomorrow...but we are so very thankful she was able to get a small amount of food in her system today! praying for clear results tomorrow.
These days have included such highs and lows for Isla. Moments where she is so sad and seems so unmotivated and scared, to moments of such joy where we can see her heart is happy and she feels calm. There are times in our day when it feels very heavy and difficult and then there is a complete turn around just a couple of hours later. What a blessing to have joy peek through the difficult times...for a day to never be without glimpses of hope and victory!
As of two days ago, even through the difficulties of not being able to eat, Isla was able to stand, but at a 90 degree angle, then next day she stood straight!
Today she did not want to stand or sit up most of the day, but literally all of the sudden, she stood right up and walked!!! She was assisted for protection, but this girl was putting all the weight on both legs and walking!!! So incredible!
Each day we see our girl's brightness returning. Zeke is a source of light, fun, smiles, and motivation for Isla.
So again, we pray for God's help and in the same breath, praise him for all he has done!
Tomorrow is a new day...
[click here] for video of recovery days 4, 5, 6
We want to say a huge thank you to everyone for the sweet messages you have sent!
We want to say a huge thank you to everyone for the sweet messages you have sent!
We are sorry if we have not returned them...but want you to know they mean so very much!
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| Thank you for all of the prayers, encouragement, and support! |
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