First off, I have to apologize for not updating sooner, but it's been just a little crazy around here... On top of everything going on with James, Joseph has been here the last 2 weeks and keeping him occupied is a FULL time job...
About two weeks ago (Wednesday will actually be 2 weeks), James had an "acute episode" that the doctors are still unable to explain... Nobody knows what caused everything to happen... All we know is that all of a sudden he was coughing up bloody mucus. The doctor came in to check what I had suctioned out of his mouth and James just started desatting. His oxygen level was in the 60s and they couldn't get it back up. He was turning blue and totally limp... One doc came in and asked if I wanted him back on the ventilator, I told her yes because his Dad was not here and I had to at least try til Joe could make it back to Denver. Right before they put the ET tube in to put him on the ventilator, they hooked a syringe up to his G tube to empty his stomach contents... BLOOD was all the doctor pulled out... It only took 2 tries and they had the tube back in and he was back on the ventilator... The difference this time was that he wasn't breathing on his own AT ALL! The ventilator was taking all the breaths for him, where last time he was breathing over the ventilator within 30 minutes.
We really thought that it was the end... By time Joe got here the xrays showed what the docs thought was blood, completely filling both lungs. They were still suctioning blood from deep down. As the days have passed, James has improved, but not enough to come off the ventilator... They were trying pressure support trials like they did last time, it shows what he is capable of doing on his own before they take the ET tube out... James failed... He has not shown enough improvement that makes the docs believe he'll be able to sustain breathing on his own. He does take breaths OVER the machine, but the machine is still doing a lot of the work for him... SOOOO what does this mean???
Surgery #3!!! They are going to do a tracheostomy so that James will have a permanent (although it can be removed if needed) ventilator... With this we are hoping that we will be able to get to a point that it is safe to transfer James home. We'll also be able to HOLD him!!! My arms have been empty for WAY too long!!! Of course the doctors have told us that this is the last option... If James can't stay stable or improve once on this, there really isn't much more they can do... So, we are praying like mad and keeping everything crossed that we can... We do know that this can be another strain on his heart, but cardiology and pulmonology are very optimistic about having this surgery done.
I will TRY MY HARDEST to let everyone know when his surgery will be... We'd like to try to set up a prayer vigil for during his surgery.
On a side note... THANK YOU TO EVERYONE WHO IS FOLLOWING JAMES ON FACEBOOK!!! It brings tears to my eyes to think of all the love and support our little angel has... He has touched the lives of so many people and a million thank yous will never ever be enough!!!
Love,
Nichole
Monday, June 28, 2010
Friday, June 4, 2010
Sacred Silence
Sacred silence, Holy Ocean, gentle water, washing over me; Help me listen, Holy Spirit. Come and speak to me...
God my Father, Christ my brother, Holy Spirit, sanctifying me; Lord, I'm sorry, please forgive me. Come and set me free.
Holy Mary, Gentle mother, God's pure vessel, praying for me; Saints and Angels, all in heaven, come and be with me...
We sang this song at Mass this past Sunday, and it was like somebody was speaking the words in my heart... How do you make the decision that somebody's life isn't worth trying for? That they have given up? That YOU should give up on them?
God, I'm sorry, for every wrong decision I've made in the care for James... Please guide us and be with us so we will know when the time is right, when you have chosen to take James home...
God my Father, Christ my brother, Holy Spirit, sanctifying me; Lord, I'm sorry, please forgive me. Come and set me free.
Holy Mary, Gentle mother, God's pure vessel, praying for me; Saints and Angels, all in heaven, come and be with me...
We sang this song at Mass this past Sunday, and it was like somebody was speaking the words in my heart... How do you make the decision that somebody's life isn't worth trying for? That they have given up? That YOU should give up on them?
God, I'm sorry, for every wrong decision I've made in the care for James... Please guide us and be with us so we will know when the time is right, when you have chosen to take James home...
Wednesday, June 2, 2010
The Plan (For now anyway)...
Six weeks!!! This is our longest stay to date at Childrens. Unfortunately there's not much new to report... James is doing about the same... Still over loading on fluid, docs are trying to get him balanced, but every time they do, it seems another problem arises... This week it's his kidneys... Numbers are high, which means his kidneys are "dry" or dehydrated, even though his lungs are filled with fluid... So, now we are cutting back on the diuretics, which means, maybe he'll get more fluid on his lungs... But if we don't and his kidneys get too dry, that's a whole new bag of worms...
His red blood cell levels were low again today, if they stay low tomorrow, he will be getting another blood transfusion... Anybody A+???
I wish I knew the answer to just get him where he needs to be... I think the more the docs "try" new things to understand his little body, the more he gets behind on recovery... They have also talked to us about maybe this being his new "well" and that he won't get better than this to be able to go home...
So they left Joe and I with the decision of trying to get through this and staying in the PICU, or, putting him in a room upstairs and keeping him comfortable until he can no longer fight...
As of now, Joe and I have decided that he still has too much fight in him to give up... So we have told the docs we want to give him his own time to recover... He may take a little longer than the average baby, but I think the more we push him on their timeline, the more he regresses... So we came up with a plan today with the new docs that took over (residents change every month) and I hope they continue to listen to our wishes as to indicators that James is ready to try new things... So far, so good, but today was only the first day... We'll see how it goes... Wish us luck...
Love to all,
Nichole
His red blood cell levels were low again today, if they stay low tomorrow, he will be getting another blood transfusion... Anybody A+???
I wish I knew the answer to just get him where he needs to be... I think the more the docs "try" new things to understand his little body, the more he gets behind on recovery... They have also talked to us about maybe this being his new "well" and that he won't get better than this to be able to go home...
So they left Joe and I with the decision of trying to get through this and staying in the PICU, or, putting him in a room upstairs and keeping him comfortable until he can no longer fight...
As of now, Joe and I have decided that he still has too much fight in him to give up... So we have told the docs we want to give him his own time to recover... He may take a little longer than the average baby, but I think the more we push him on their timeline, the more he regresses... So we came up with a plan today with the new docs that took over (residents change every month) and I hope they continue to listen to our wishes as to indicators that James is ready to try new things... So far, so good, but today was only the first day... We'll see how it goes... Wish us luck...
Love to all,
Nichole
Monday, May 31, 2010
"One Moment More"
Hold me
Even though I know you're leaving
And show me
All the reasons you would stay
It's just enough to feel your breath on mine
To warm my soul and ease my mind
You've got to hold me and show me now
Give me
Just one part of you to cling to
And keep me
Everywhere you are
It's just enough to steal my heart and run
And fade out with the falling sun
Oh, please don't go
Let me have you just one moment more
Oh, all I need
All I want is just one moment more
You've got to hold me and keep me
Tell me that someday you'll be returning
And maybe
Maybe I'll believe
It's just enough to see a shooting star
To know you're never really far
It's just enough to see a shooting star
To know you're never really gone
Oh, please don't go
Let me have you just one moment more
Oh, all I need
All I want is just one moment more
Oh, please don't go
Let me have you just one moment more
Oh, all I need
All I want is just one moment more
You've got to hold me and maybe I'll believe
So hold me
Even though I know you're leaving
I love you James... With every ounce of my heart and soul.... <3 Mommy
This is a song by Mindy Smith... She wrote it for her mother...
Even though I know you're leaving
And show me
All the reasons you would stay
It's just enough to feel your breath on mine
To warm my soul and ease my mind
You've got to hold me and show me now
Give me
Just one part of you to cling to
And keep me
Everywhere you are
It's just enough to steal my heart and run
And fade out with the falling sun
Oh, please don't go
Let me have you just one moment more
Oh, all I need
All I want is just one moment more
You've got to hold me and keep me
Tell me that someday you'll be returning
And maybe
Maybe I'll believe
It's just enough to see a shooting star
To know you're never really far
It's just enough to see a shooting star
To know you're never really gone
Oh, please don't go
Let me have you just one moment more
Oh, all I need
All I want is just one moment more
Oh, please don't go
Let me have you just one moment more
Oh, all I need
All I want is just one moment more
You've got to hold me and maybe I'll believe
So hold me
Even though I know you're leaving
I love you James... With every ounce of my heart and soul.... <3 Mommy
This is a song by Mindy Smith... She wrote it for her mother...
Sunday, May 23, 2010
Oh PICU, how I've missed You...
Just wanted to update everyone on where we are and James' condition.... We are still in Childrens and have already passed the 1 month mark... James was off the ventilator after only two weeks of being on it... Yay!!! He was doing so well the first week off the vent, but things have progressively (though slowly) gotten worse... He was sent to the 9th floor into a regular room last Sunday, and since then has required 2 blood transfusions and went through another fever cycle...
Yesterday we tried to do some breathing tests on him to see how well he would do off the c-pap machine, and he failed... He only lasted about an hour and then it took him 2 hours to recuperate from the whole incident... He ended up resting well through the night and even had an ok morning... But by noon he was starting to work harder and harder to breathe... His heartrate starting rising and not coming down, his temperature started going up, his respiratory rate was in the 60's!!! The doctors, nurses and respiratory therapists did everything they could on the 9th floor,they were suctioning deep down his nose and throat and pulling out huge blood clots and they don't really know where they are coming from... so they thought it would be in James' best interest to come back down to the PICU... So, here we are...
They missed us down here. Right now there are blood and other tests pending and more to be done first thing in the morning... I will try to keep everyone posted as these days progress... Please keep praying as I know you have... And he'll keep fighting, as he always does...
Love <3
Nichole
Yesterday we tried to do some breathing tests on him to see how well he would do off the c-pap machine, and he failed... He only lasted about an hour and then it took him 2 hours to recuperate from the whole incident... He ended up resting well through the night and even had an ok morning... But by noon he was starting to work harder and harder to breathe... His heartrate starting rising and not coming down, his temperature started going up, his respiratory rate was in the 60's!!! The doctors, nurses and respiratory therapists did everything they could on the 9th floor,they were suctioning deep down his nose and throat and pulling out huge blood clots and they don't really know where they are coming from... so they thought it would be in James' best interest to come back down to the PICU... So, here we are...
They missed us down here. Right now there are blood and other tests pending and more to be done first thing in the morning... I will try to keep everyone posted as these days progress... Please keep praying as I know you have... And he'll keep fighting, as he always does...
Love <3
Nichole
Sunday, April 25, 2010
Here we go.... AGAIN....
So... Most of you know that we have been at Childrens again since last Wednesday... We had brought James into the ER in Delta for bleeding out of his G-tube early afternoon on Tuesday, the doc in the ER called the pediatric surgeon in Grand Junction and he told us it was totally normal, usually caused by some type of stomach irritation. Later that night he was having trouble breathing so we brought him back into the ER, by 5am he was doing much better, so they sent us home. By 8:30am, we knew he was MUCH worse, we hooked him up to the pulse ox machine at home and his oxygen sats were in the high 70s to low 80s. So we immediately took him back to the ER.
James was originally sent here with what they thought was pneumonia again. Both of his lungs were completely full of fluid when they took an xray in the ER at Delta Hospital... The doc in the ER called over the hospital pediatrician and our "secondary physician," Dr. Moore. When she came in the room she immediately told the respiratory therapist to do 2 more breathing treatments, he had just finished one called a duo-neb. It is called that because it has two forms of medication in it... So he took 3 duonebs one right after the other. He was still struggling SO hard to breathe. His little belly was moving in and out so fast he looked like a humming bird. :(
She knew immediately that something needed to be done and was on the phone to have us transferred right away... When the flight care team arrived at Delta Hospital they immediately sedated him and put him on a ventilator because the levels of CO2 in his blood were extremely high. This meant that, although his blood was circulating, it was not getting re-oxygenated correctly and he was pretty much suffocating. Watching them put the tube in to help him breathe has been the HARDEST thing I've experienced with all of his medical problems.
Since being at Children's they have realized that his lungs are full of fluid, not because of pneumonia, but because of the bleed he had (which we are still unsure where it originated from), his heart was working extra hard (especially since he has cardiomyopathy), and when the blood wasn't reoxygenating, it was backing fluid up into his lungs....
They tried to do some pressure testing today, which means, they take him off of the ventilator for an hour to see how well he can breathe on his own. He failed both times they tried today and only lasted about 30 minutes on his own. The second time they tried he ended up having seizures from being so stressed out. So they are going to let him rest and they might try again tomorrow. I will try to keep everyone posted as the days pass and he does come off the ventilator, but for now, keep those prayers coming!!! Love to all...
Joe & Nichole
James was originally sent here with what they thought was pneumonia again. Both of his lungs were completely full of fluid when they took an xray in the ER at Delta Hospital... The doc in the ER called over the hospital pediatrician and our "secondary physician," Dr. Moore. When she came in the room she immediately told the respiratory therapist to do 2 more breathing treatments, he had just finished one called a duo-neb. It is called that because it has two forms of medication in it... So he took 3 duonebs one right after the other. He was still struggling SO hard to breathe. His little belly was moving in and out so fast he looked like a humming bird. :(
She knew immediately that something needed to be done and was on the phone to have us transferred right away... When the flight care team arrived at Delta Hospital they immediately sedated him and put him on a ventilator because the levels of CO2 in his blood were extremely high. This meant that, although his blood was circulating, it was not getting re-oxygenated correctly and he was pretty much suffocating. Watching them put the tube in to help him breathe has been the HARDEST thing I've experienced with all of his medical problems.
Since being at Children's they have realized that his lungs are full of fluid, not because of pneumonia, but because of the bleed he had (which we are still unsure where it originated from), his heart was working extra hard (especially since he has cardiomyopathy), and when the blood wasn't reoxygenating, it was backing fluid up into his lungs....
They tried to do some pressure testing today, which means, they take him off of the ventilator for an hour to see how well he can breathe on his own. He failed both times they tried today and only lasted about 30 minutes on his own. The second time they tried he ended up having seizures from being so stressed out. So they are going to let him rest and they might try again tomorrow. I will try to keep everyone posted as the days pass and he does come off the ventilator, but for now, keep those prayers coming!!! Love to all...
Joe & Nichole
Thursday, April 15, 2010
Just another day...
I love when there's nothing to "report." (knock on wood) It's been pretty "normal" around here. Over the last two weeks, after all our company left, we've shared the crud amongst the Kurtz household. Now it's MY turn with it... Es no bueno...
Tuesday we took James to get his port flushed for the first time since leaving Children's.. I wish all encounters at the hospital went as smoothly as that did... It just makes me feel like fighting to have that port placed has been such a blessing for James... No more fighting to get a vein. YAY!
We are coming upon fever days for James, which are never fun, and with me not feeling well, I truly dread the long uncomfortable nights he's going to have... Poor baby... Poor MOMMY!! ;)
We are so excited for the warm weather that's been here lately... Not only does it mean no more cabin fever, but also the end of FLU/RSV season!!! WOOHOO!!! James gets his last Synagis shot on Wednesday (helps prevent RSV). I feel bad for getting his shots the day before his birthday, but he needs this last dose... Until next season... :(
On a side note... Please pray for baby Ben Page... He is in Children's as I type with a high fever (almost hit 106!!!), he is on the waiting list for a heart, but if one comes available while he has a fever, he cannot get it... Right now, according to his mom's blog, they are thinking pneumonia and have already started antibiotics... So if you could just add him to the list of prayers, I'd appreciate it and I'm sure his parents will too... I've met some AMAZING people and other strong and "chosen" parents at our multiple stays at the hospital... It just makes me feel like I'm not alone, that other people are fighting these battles and fighting for the life of their child... WE TRULY ARE AMAZING!!! ;)
Tuesday we took James to get his port flushed for the first time since leaving Children's.. I wish all encounters at the hospital went as smoothly as that did... It just makes me feel like fighting to have that port placed has been such a blessing for James... No more fighting to get a vein. YAY!
We are coming upon fever days for James, which are never fun, and with me not feeling well, I truly dread the long uncomfortable nights he's going to have... Poor baby... Poor MOMMY!! ;)
We are so excited for the warm weather that's been here lately... Not only does it mean no more cabin fever, but also the end of FLU/RSV season!!! WOOHOO!!! James gets his last Synagis shot on Wednesday (helps prevent RSV). I feel bad for getting his shots the day before his birthday, but he needs this last dose... Until next season... :(
On a side note... Please pray for baby Ben Page... He is in Children's as I type with a high fever (almost hit 106!!!), he is on the waiting list for a heart, but if one comes available while he has a fever, he cannot get it... Right now, according to his mom's blog, they are thinking pneumonia and have already started antibiotics... So if you could just add him to the list of prayers, I'd appreciate it and I'm sure his parents will too... I've met some AMAZING people and other strong and "chosen" parents at our multiple stays at the hospital... It just makes me feel like I'm not alone, that other people are fighting these battles and fighting for the life of their child... WE TRULY ARE AMAZING!!! ;)
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