Surgery Number 3...

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

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...

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

"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...

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

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

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!!! ;)

Bittersweet...

Sooo... We had the most AMAZING Easter celebration this year... We decided to get the whole family together (my side and Joe's) to not only celebrate James' first Easter, but also his first birthday...

It's all pretty bittersweet. James turning 1, not knowing what the future holds or how many more Easters or birthdays he will actually see. And I could tell, as some people said goodbye to head home (however many miles they were going), they wondered if this would be the last time they would see him, and it breaks my heart. I'M the lucky one... I get to spend every moment of EVERY day with him...

Total, we had about 70 family members and close friends here... Lots of cooking, tons of great food... It was so great to see everybody come together, feuds forgotten, words forgiven. If only everyone lived like that everyday... Don't sweat the small stuff, don't hold grudges, who knows who will be here with us tomorrow... Sometimes it gets me, how much time people waste being angry or bitter...

Don't they REALIZE how precious every single DAY is?!?!?!?!

What's the word...

If you lose your husband, you're a WIDOW.
If you lose your wife, you're a WIDOWER...

What are you when you lose a child???

Just another day...

I am having a really bad week... I don't know what's different this week as opposed to every other week, but... I've been crying a lot. I've reached the point where I feel like everything I'm doing is completely WRONG... Like God made a mistake when he "chose" me to take care of James, and Joseph for that matter.

I can't keep up with laundry, dishes, etc... I would rather sit on the couch and watch a movie with the boys than clean... I don't think any person really LIKES to clean, but "normal" people find a reason to get off their a$$es and I just can't seem to find the motivation anymore. Am I depressed, um probably... Overstressed? Maybe just a little. I just don't get it... I want it done, I do... But I just can't drag myself to do it. I'm worn out, exhausted, depressed, sad, mad, frustrated, pissed off, angry, annoyed, irritated, resentful and every other feeling you can imagine...

My Mom is trying to help us get more organized. But I just don't know where to start... Maybe I do just need her to kick me in the tush to get me started... I don't know. I am feeling better today than I was two days ago... I cried all day on Wednesday. Don't know why... Joe would ask what was wrong, and I honestly and truly couldn't say. Maybe I just needed a good cryfest week... We'll see... I hope it just keeps getting better rather than worse. I know I'll have my "days," but hopefully not weeks like this one. Oh well.

Home again....

Well, we got home three nights ago and James is doing well. He is running his fever cycle though... (sigh) I wish there was a way to prevent these from happening.... Oh, well...

James had surgery last Friday, before we left the hospital... Nothing major, it was actually considered an out-patient procedure, but since he was already an in-patient, we stayed another night anyway... They placed a mediport!!! YAY!!! What this is, is a permanent IV that is completely under the skin. It runs under his left collar bone into one of the main veins.... This means he will ALWAYS have access.... SO, we shouldn't have to be sent to St. Marys or even Denver as often since they will have a way to draw blood and give life saving medications now....

Part of the reason Delta Hospital didn't like having him as a patient was because there was NO way to get IV access. His low muscle tone and heart condition make it really hard to find a vein...

Anyway... We're happy to be home... Trying to get all James' therapy sessions and nurse visits rescheduled... Today we spent the morning at the doctor's office and the hospital, getting bloodwork.... Unfortunately his sodium level has dropped again... :( I don't know what the doctor wants to do yet, but I'm guessing another blood draw to check again tomorrow... Sometimes it seems like it will never end, but you know what, as long as it continues, that means he's here with us.... SO, I'm pretty willing to sacrifice.... Mommy loves you James. :)

Still at TCH....

Sorry everyone for not keeping this more updated... We are still here at Children's Hospital in Denver. Fortunately, James got through his pneumonia and is sounding MUCH better. His oxygen requirement has gone back to normal and we are suctioning his nose A LOT less...

Unfortunately, James' sodium levels have been too low. They are calling it SIADH, which stands for Syndrome of Inadequate Anti-Diuretic Hormone. His little body is retaining fluid and not letting it pass... Sooooo, for the last 3 days, they have been poking him every 3 hours to get blood to check his sodium levels. Saturday morning they came up to normal range, so they increased his food. But by the afternoon his levels had dropped again. If his levels get too low it could cause seizures or even heart failure. But they have really been on top of things and before his numbers could get that low they started giving him sodium chloride. Today his numbers are back in the normal range, so they increased his feedings again about 3 hours ago. His next blood draw is at midnight (1 hour from now) and hopefully his levels are staying the same. If he drops down again we'll have to decrease his food again... He is only getting 15mls of food per hour. That's 3 teaspoons of fluid... The doctor said that it's just enough to keep him hydrated, because even though he is retaining fluid, the sodium levels are telling his body it is dehydrated.

If all goes well they will increase his food slowly over the next day or two and if his sodium levels stay normal and they get him to his goal feeding, which is 43ml/hour, we get to go home.... Our fingers are crossed. I have a lot of faith in my little man, he has pulled through so much, I know he can get through this...

TCH

So... Here we sit at Children's Hospital yet again. Unfortunately, this visit isn't going as great as last visit. It seems the doctors aren't listening to us... Hmmm, maybe they should go work at St. Mary's... Anyway... We sat here ALL day yesterday after the doctors had come in, waiting to see what they were going to do. Not one thing was done yesterday, then they wanted to send us HOME this morning.

He is doing better as far as his oxygen requirement. He is back down to "baseline" which is 1 liter. When we flew here he was on 3 liters in the airplaine, or as Joseph says, hairplane. Unfortunately, he can't lay on his left side because his oxygen saturation drops into the low-mid 80s. We do know from the xray done on Tuesday at Delta Hospital, that his pneumonia is in his left side, so it makes sense that he has a harder time breathing when laying on that side.

His blood pressures have been pretty high for him and we had mentioned it to the doctors yesterday, but they weren't going to call in the cardiologist until I insisted on seeing one today. He seemed surprised that the team hadn't ordered a new chest xray because his heart was larger in the xray from Tuesday. So, the xray was done late this afternoon, so we should have results in the morning. And they are also going to do another echo to make sure his heart is doing ok.

When his pediatrician (we love you Dr. Moore) called to have him admitted Tuesday, she spoke to the pulmonology attending to get things started. Stating that he needed to SEE a pulmonologist, get started on vibration therapy and be evaluated. WE HAVE NOT SEEN A PULMONOLOGIST. The doctors have not called in the pulmonology team. Does that make any sense???????????? He is here for chronic lung problems and they are ready to send him HOME without even doing what he was sent here to have done. I was so upset this morning.... I cried and cried and cried.... If they do NOT listen to us tomorrow, I am asking, no insisting, on a different team of doctors. I am so tired of some doctors treating US like we are over reacting. This is my child!!! He is not like a "normal" kid with a cold, any small lung infection can KILL him... What don't they get???

GRRRRR!!!!!!!!!!!!!!!!

Another day of running around to hospitals...

When Joe got home from work this morning he woke me up because James was running a fever. I looked into his bed and he was working SO hard to breathe. Even harder than yesterday. We gave him a neb treatment and I called the doctor to see what his x-ray showed from yesterday. No pneumonia, which is good news, but the radiologist said he could tell that his lungs were in bad shape, pneumonia or not. The doctor wanted James hospitalized to go through percussion therapy with a respiratory therapist IN the hospital. She said she wanted them to use a vibration vest (?) to help keep James' lungs clear. She told me they use these a lot in children and adults with cystic fibrosis. Fortunately James has tested negative for CF... She called the local hospital and they didn't want the responsibility, again, they are not really equipped for children and James truly scares all of the nurses at Delta Hospital... SOOO, quickly we packed ourselves up for another hospital stay. His doc spoke with a pediatrician from St. Mary's, she said to go through the ER, tell them what was going on, and then they could admit him for treatment from there. Well, that didn't happen. The ER doc treated us like we were over-reacting, which maybe I do once in awhile, but when it comes to a child with severe disabilities and illnesses, I think I have EVERY right to OVER react!!! On top of that, nobody in the Grand Junction area even had the vibration vest they needed in order to do the treatment the doctor had originally wanted, and since it was Friday afternoon, the chances of us getting one soon were pretty much nil. So he was ready to send us home. After Joe and I talked for a few, we decided we weren't really comfortable with this for a few reasons... One, we live about 45 minutes away. Two, it was snowing like CRAZY. Three, he was running a fever, having a hard time breathing and wheezing. I told the doctor my concerns and guess what he said to me.... "Insurance doesn't pay for mom's peace of mind." And that Joe and I don't need to bring James in for every cough or cold, that we should "learn to manage his care a little better."

WHAT?!?!?!?!?!?!

Let me just say this.... That dr is lucky he went home with all his teeth today...

So, we are at home with James. He seems to be doing a little better. Fever is gone. We are doing neb treatments every 3 hours instead of 4 and we have him in his little vibrating bouncer seat. They wanted vibration, right? We'll do it ourselves. I think we are managing just fine.

Sleep... I think I've heard of that before...

Sooo.... Joseph woke me up at about 5:30 this morning, after my insomnia kept me up til 4 a.m. He crawled into bed with me with a really bad cough... He asked for a glass of water. Thank GOD!!! When I got up I noticed a funny noise coming from James' bed. He was having a very hard time breathing. He was wheezing worse than I've ever heard him wheeze before. I quickly called Hospice, they have a nurse on call 24/7 that comes to us, rather than having to load both kids and head to the ER by myself since Joe works graves... Anyways, while waiting for her I did James' neb treatment and some deep nose and mouth suctioning, by time she got here he sounded 75% better. But we did end up taking him in to see a doctor and doing a chest x-ray just to be on the safe side. He does have a double ear infection, poor baby!!! I should have x-ray results in the morning. So, needless to say, I got about 3 hours of broken sleep last night, but my wonderful husband, Joe, did let me take a nap this afternoon, but I woke up with a tummy ache. So Joe made us some chicken noodle soup and let me take a break... I love that man! ; )

What the Blog???

I was asked by a very dear friend, (Cassandra), to create this blog so that she can keep tabs on our sweet baby James. So here it is, my attempts at trying to keep everyone up to date with James and his condition. Please read James' story for those of you who don't know us/him... Love to all...