Endurance came down with a virus last week which is a common cold to us healthy folk, yet can be tremendous to someone with a compromised immune system. Back in isolation!!! He also has tracheitis which was found on Friday. His lungs stopped ventilating the CO2 out, and they had to put him on a different ventilator in order to keep him alive this weekend. This is the last thing they said they can do to help him. The nurses have been getting plenty of secretions out of his lungs since he's been on this new ventilator, which has helped greatly. It's amazing to watch this machine. It's giving him 660 breaths a minute and therefore vibrates him. It's quite loud and sounds like a model T Ford.
This morning one of his doctors said that saying that Endurance is "stabile" is an overshot. But he has not gotten any worse either since Saturday. We thank God for this so much!
Please pray that we can quickly get him off of this oscillating ventilator, as Endurance has to be completely paralyzed the entire time he is on it.
On top of this, Friday and Saturday was our statewide Christian Heritage Home School - Family Discipleship Conference. God is amazing to have made it possible for us to go to most of it. We were truly, truly blessed by the sessions, even though we had to leave early and rush back to the hospital Saturday afternoon. God has blessed us with amazing brothers and sisters in Christ that after finding out our situation, packed their families up (meaning leaving the conference early too), came to the hospital, blessed us with dinner and fellowship, and watched our children so we could be back with Endurance. Thank you!!!
Our entire family is blessed by all of your prayers and encouragment as we continue on this race!
Monday, May 2, 2011
Tuesday, April 26, 2011
Endurance is Leaving Seattle!
Dear praying loved ones,
Mike sent this wonderful update regarding Endurance to our church and I cannot think of anything more to add except my deepest appreciation for the same two doctors Mike already has, Dr. Lewis-Newby and Dr. McQuinn. God has used them mightily! Huzzah!
**************************************
From Mike, April 26, 2011...Dear Brothers and Sisters in Christ,
Today we are praising our Saviour!
On February 2nd they were telling us to remove life support.
That Endurance was not happy. He didn't want to be
reintubated, they said. He wasn't comfortable. He could
die in the intubation process. Just let him go 'peaceably.'
Now we will be flying out of Boeing Airfield on a Med-Jet.
To go to Nationwide Children's Hospital in Columbus, OH.
Both Dr. Galantowicz in OH and Dr. Burke in Miami are both
willing and able to conduct the needed surgery for Endurance.
What a difference. Instead of having to decide to let him die
or to reintubate, now we had to make the really difficult
decision of which surgeon to send Endurance to!
Both of these gentlemen are top tier. And their teams are also.
Heather and I are indebted to these two teams for accepting
Endurance, when fourteen others said 'No,' five others haven't
got around to presenting him yet, and one other said he'd do 1/2.
Columbus is only a 4 hour flight for Endurance, rather than
six to Miami. Time in the air while intubated is crucial. The
team here is saying that if a miracle worker [like Burke] fell
out of the sky and said, "I'll do it!" (which is what Dr. Burke
did!), and Dr. Galantowicz was the other option, they would
still go to Galantowicz simply based on the number of times
he's done this exact surgery. Babies come to him from
around the world for this surgery. He created the Stage One
Hybrid that is used around the world today.
I might add, we are also indebted to the fine staff here at
Seattle Children's. If it wasn't for Gordon Cohen and Tom
Jones doing the Hybrid, and the amazing Cardiologists,
both regular and Interventionalists, the attending Intensivists,
the jolly good 'fellows,' the nurses and RT's, the nutritionists,
pharmacists and PACT team members, and yes, even the
Ethics Committee members - if not for these blessings from
God, Endurance may not be alive today. And a special
note of thanks to Dr. Tim McQuinn, who helped me when
everyone else in this building gave up on us. And to Dr.
Lewis-Newby, who had the dream about Endurance and
came in the next day and started things moving.
God is so good! We still have some bureaucratic red tape to cut through that may take another 3 days to 2 weeks before we
leave, but it's happening, the Lord Willing! Now, we will be
making all of the various logistical decisions regarding who goes, who stays, if any, how do we get there, do we sell this 9 mpg van and get a cheaper one for the drive, do we keep a house here vacant during a potentially long recovery... ??? We figure if the Lord can take care of the Big stuff, the little things will all work out!
Thank you for all your prayers along this way we've come.
For Christ and His Kingdom,
Mike & Heather Holston, for all the Holstons;
Isaiah, Sarah, Hannah, David, Elijah, Noah, Faith, and Endurance
"And Elisha prayed, and said, LORD, I pray thee, open his eyes,
that he may see. And the LORD opened the eyes of the young
man; and he saw: and, behold, the mountain was full of horses
and chariots of fire round about Elisha."
II Kings 6:17
Tuesday, April 19, 2011
In the Waiting Pattern
I just wanted to quickly update y'all...
Last Friday Oregon Children's Hospital called Mike and told him "no" to our request for Endurance's surgery.
Tomorrow Stanford Children's will be presenting Endurance to their team and hopefully we will know their answer shortly.
The Columbus OH surgeon had a few more questions regarding Endurance's overall health. We asked a specific doctor here to talk with him directly, then this surgeon will re-present Endurance to his team either tomorrow or Friday.
We are still awaiting answers from other hospitals as well.
Behind the scenes we've been meeting with a quaint woman who is now going to play a heavy part in Endurance's departure here from Seattle. She has all of the paperwork filled out except the "hospital transferring to" line! We've had doctors bending over backwards to help Endurance.
This is slowly becoming a reality to me. If Endurance makes it through these high-risk procedures, he actually will be coming home! We're not sure where "home" will be. I can't think that far ahead! There are so many unanswered questions about so much that it can be quite overwhelming. I am elated that God is in control of everything and I can cast all my cares on Him.
Please continue to pray for our family. We really appreciate your prayers!!!!
Last Friday Oregon Children's Hospital called Mike and told him "no" to our request for Endurance's surgery.
Tomorrow Stanford Children's will be presenting Endurance to their team and hopefully we will know their answer shortly.
The Columbus OH surgeon had a few more questions regarding Endurance's overall health. We asked a specific doctor here to talk with him directly, then this surgeon will re-present Endurance to his team either tomorrow or Friday.
We are still awaiting answers from other hospitals as well.
Behind the scenes we've been meeting with a quaint woman who is now going to play a heavy part in Endurance's departure here from Seattle. She has all of the paperwork filled out except the "hospital transferring to" line! We've had doctors bending over backwards to help Endurance.
This is slowly becoming a reality to me. If Endurance makes it through these high-risk procedures, he actually will be coming home! We're not sure where "home" will be. I can't think that far ahead! There are so many unanswered questions about so much that it can be quite overwhelming. I am elated that God is in control of everything and I can cast all my cares on Him.
Please continue to pray for our family. We really appreciate your prayers!!!!
Thursday, April 14, 2011
Looking Brighter
It is a gray, rainy, spring day in Washington. But it's only what you think of it, right? Because we're quite happy here! Why? A couple of reasons....
Endurance has his first tooth! It was discovered quite by accident. He needed suctioned, something that we're allowed to do, which is basically the same as being at the dentist and having someone put that vacuum-like tube in your mouth to clean it. Well, I was cleaning his mouth out and this white thing wouldn't get off of his gum. Hence, I felt it and got a surprise!!! Sometimes I forget that while he's living in the ICU, he's still a baby and I should except baby things! So now when he's crying or agitated, we have to add "possible teething" on his list.
Next item...
So far, Endurance has two teams of surgeons that would be honored to perform his Comprehensive Stage II surgery! Yahoo!!!! The Children's hospitals in Florida and Ohio have both said yes! We're still waiting on other hospitals' responses. Some have come back saying no. Portland OR will present Endurance tomorrow morning to their group of cardiac specialists. Stanford Children's (CA) will do the same next Wednesday, Lord willing.
God is so good. I cannot thank Him enough for using Mike in so many ways to talk directly with all of these surgeons, regarding Endurance. Some have even called us at home in the evenings. I always thought that you couldn't talk directly to these surgeons, as if they were too busy sitting on a pedestal or something. God has shown me not to misjudge people.
Our family asks for prayer for guidance in so many decisions that will be made even as soon as tomorrow. May God be glorified in every word spoken, decision made, and detail regarding Endurance. Thank you!!!
Endurance has his first tooth! It was discovered quite by accident. He needed suctioned, something that we're allowed to do, which is basically the same as being at the dentist and having someone put that vacuum-like tube in your mouth to clean it. Well, I was cleaning his mouth out and this white thing wouldn't get off of his gum. Hence, I felt it and got a surprise!!! Sometimes I forget that while he's living in the ICU, he's still a baby and I should except baby things! So now when he's crying or agitated, we have to add "possible teething" on his list.
Next item...
So far, Endurance has two teams of surgeons that would be honored to perform his Comprehensive Stage II surgery! Yahoo!!!! The Children's hospitals in Florida and Ohio have both said yes! We're still waiting on other hospitals' responses. Some have come back saying no. Portland OR will present Endurance tomorrow morning to their group of cardiac specialists. Stanford Children's (CA) will do the same next Wednesday, Lord willing.
God is so good. I cannot thank Him enough for using Mike in so many ways to talk directly with all of these surgeons, regarding Endurance. Some have even called us at home in the evenings. I always thought that you couldn't talk directly to these surgeons, as if they were too busy sitting on a pedestal or something. God has shown me not to misjudge people.
Our family asks for prayer for guidance in so many decisions that will be made even as soon as tomorrow. May God be glorified in every word spoken, decision made, and detail regarding Endurance. Thank you!!!
Friday, April 8, 2011
Endurance's pulse can be faintly heard in his right foot now. Thank you for your prayers! Yesterday he did not have a good day. He slept pretty much throughout the day. His saturations were low, heart rate high, even while sleeping, and temperature high. His coloring also was a dusty grayish type of color. So they have took blood cultures to see if he is brewing some sort of an infection again. Also he had a blood transfusion to see if this would help, which it did. His blood count was lower than usual.
Today he is doing much better, but the doctors wanted more blood cultures taken and a urine sample to be taken. They don't think he looks like his usual self.
We have sent out the reports to the surgeons that wanted more information and are now waiting.
Thank you again for your prayers,
Heather
Today he is doing much better, but the doctors wanted more blood cultures taken and a urine sample to be taken. They don't think he looks like his usual self.
We have sent out the reports to the surgeons that wanted more information and are now waiting.
Thank you again for your prayers,
Heather
Psalm 33:20...Our soul waits for the LORD; He is our help and our shield.
Wednesday, April 6, 2011
Endurance had a cardiac catherization procedure this morning. All went well. He is back in his room right now recovering from the anethesia. This procedure's results will give the information that various surgeons have requested of Mike, who has been speaking with them back and forth these past couple of weeks.
I do ask for prayer for Endurance. His upper right leg is where the doctor went in to do this procedure, and now they are unable to find a pulse in his leg. He has had these interventional procedures before and the second one, I believe, is where he obtained a blood clot in his left leg (and has been on Enoxaparin ever since). His right leg is also where his picc line is running through.
Thank you for your continued prayers for Endurance. We so appreciate your love and encouragement.
P.S. We were blessed with a really good nurse in preparation for today. She requested to be Endurance's nurse! Thank you Genevieve!
I do ask for prayer for Endurance. His upper right leg is where the doctor went in to do this procedure, and now they are unable to find a pulse in his leg. He has had these interventional procedures before and the second one, I believe, is where he obtained a blood clot in his left leg (and has been on Enoxaparin ever since). His right leg is also where his picc line is running through.
Thank you for your continued prayers for Endurance. We so appreciate your love and encouragement.
P.S. We were blessed with a really good nurse in preparation for today. She requested to be Endurance's nurse! Thank you Genevieve!
Wednesday, March 30, 2011
Some recent Pictures
Sarah and David were having fun with the camera again...
Endurance enjoying a good day. He's trying to suck his thumb that's always hiding in his fist!
He's holding onto his little mouse friend's paw. He loves these mice! Endurance and his mice have stirred up many a conversation between doctors, nurses, and RT's. We're looking for one more so they can become the three blind mice group.
This necklace has a story of it's own...
I saw a poster in the oncology department here at the hospital when David and I were went exploring back in November. The organization promoting the poster is called Beads of Change. How it works is a patient (cancer and cardiac) can sign up for a necklace and everytime they receive a certain treatment or go through something like a surgery, have a blood transfusion, ICU stay, etc; they receive a special glass bead that corresponds to the procedure listed on a chart. The beads add up and a necklace is formed during a lengthy hospital stay.
So about six weeks ago I asked Wendy from the Child Life dept. if Endurance could get something through the Beads of Change, as I went on their website and Seattle Children's does it, and is the only one in WA that does. She said she'd find out for me. She came back later to say that Children's actually only does this for the cancer patients, but she could figure something out for Endurance. This got back to an oncology nurse who put this together with Wendy. Wendy told her what she knew of what Endurance had gone through and they found the corresponding beads to tell his "story." She even added two glow-in-the-dark beads for radiation treatments, "just because they're pretty and he'll like them," she said. (They're the ones two beads away from both sides of his name).
The above necklace is what Wendy brought to Endurance a couple of weeks ago. For just guessing, she did pretty well. I cried and gave her a huge hug! The only thing is, the oncology nurse that helped Wendy do this said that since they only do cancer patients here, not to let everyone know about what she did for Endurance. So keep this to yourselves please! Ha! :) We will need to do the rest on our own. We'll have to add about 30 more beads and we'll be caught up to date! I'd love to finish it off with a purple heart, which if I can remember correctly, it means that treatment is all finished! Only God knows even the length of this necklace.
Thank you for letting me share this. ~heather
Endurance enjoying a good day. He's trying to suck his thumb that's always hiding in his fist!
He's holding onto his little mouse friend's paw. He loves these mice! Endurance and his mice have stirred up many a conversation between doctors, nurses, and RT's. We're looking for one more so they can become the three blind mice group.
This necklace has a story of it's own...
I saw a poster in the oncology department here at the hospital when David and I were went exploring back in November. The organization promoting the poster is called Beads of Change. How it works is a patient (cancer and cardiac) can sign up for a necklace and everytime they receive a certain treatment or go through something like a surgery, have a blood transfusion, ICU stay, etc; they receive a special glass bead that corresponds to the procedure listed on a chart. The beads add up and a necklace is formed during a lengthy hospital stay.
So about six weeks ago I asked Wendy from the Child Life dept. if Endurance could get something through the Beads of Change, as I went on their website and Seattle Children's does it, and is the only one in WA that does. She said she'd find out for me. She came back later to say that Children's actually only does this for the cancer patients, but she could figure something out for Endurance. This got back to an oncology nurse who put this together with Wendy. Wendy told her what she knew of what Endurance had gone through and they found the corresponding beads to tell his "story." She even added two glow-in-the-dark beads for radiation treatments, "just because they're pretty and he'll like them," she said. (They're the ones two beads away from both sides of his name).
The above necklace is what Wendy brought to Endurance a couple of weeks ago. For just guessing, she did pretty well. I cried and gave her a huge hug! The only thing is, the oncology nurse that helped Wendy do this said that since they only do cancer patients here, not to let everyone know about what she did for Endurance. So keep this to yourselves please! Ha! :) We will need to do the rest on our own. We'll have to add about 30 more beads and we'll be caught up to date! I'd love to finish it off with a purple heart, which if I can remember correctly, it means that treatment is all finished! Only God knows even the length of this necklace.
Thank you for letting me share this. ~heather
Thursday, March 24, 2011
Endurance's Poem
I wanted to share with you a poem Hannah (12) wrote to me yesterday!
E is for Elijah, who gives Endurance shows;
N is for "Nice and slow," when he wiggles his tiny toes.
D is for Dilaudid, which he gets when he's fussy,
U is for Uncombed, when his hair is awfully messy.
R is for Race, with him we're running fast!
A is for "Ahhh," when I reach his room at last.
N is for Nice and Neat, he's as cute as can be,
C is for Cute, when he looks up at me!
E is for Endurance, who loves his Mama such, but she loves him even more; she loves him very much!
This sure cheered me up!
Last night our nurse asked if we would give him permission to have Endurance put on his mother's prayer group list back in Georgia! He said he did this on occasion and knew that we believed in prayer. What a blessing it was to talk with him about God's will and sovereignty!
Please pray as Mike fervently seeks several second opinions throughout the U.S. on surgical options for Endurance. He's spoken with many doctors and has sent out several pkgs with Endurance's reports and echocardiograms on cds. I'll keep you posted as this progresses.
~heather
E is for Elijah, who gives Endurance shows;
N is for "Nice and slow," when he wiggles his tiny toes.
D is for Dilaudid, which he gets when he's fussy,
U is for Uncombed, when his hair is awfully messy.
R is for Race, with him we're running fast!
A is for "Ahhh," when I reach his room at last.
N is for Nice and Neat, he's as cute as can be,
C is for Cute, when he looks up at me!
E is for Endurance, who loves his Mama such, but she loves him even more; she loves him very much!
This sure cheered me up!
Last night our nurse asked if we would give him permission to have Endurance put on his mother's prayer group list back in Georgia! He said he did this on occasion and knew that we believed in prayer. What a blessing it was to talk with him about God's will and sovereignty!
Please pray as Mike fervently seeks several second opinions throughout the U.S. on surgical options for Endurance. He's spoken with many doctors and has sent out several pkgs with Endurance's reports and echocardiograms on cds. I'll keep you posted as this progresses.
~heather
Monday, March 21, 2011
Getting Better!
Just a quick update to let you know that Endurance still has his blood infection, which seems to be getting better. He is just on two antibiotics now and the doctors have slowly turned his nitric oxide off. With that said, he is spiking a fever when he's awake, which is keeping the doctors in wonderment, hence, they've taken more blood cultures this morning.
So, he's getting better, but being watched to see if something new is brewing.
"Not that I speak from want, for I have learned to be content in whatever circumstances I am." ~Philippians 4:11 NASB
So, he's getting better, but being watched to see if something new is brewing.
"Not that I speak from want, for I have learned to be content in whatever circumstances I am." ~Philippians 4:11 NASB
Thursday, March 17, 2011
This is Mike's posting to our church on Tuesday. I will post the update at the bottom of this post:
Endurance is struggling right now. He was confirmed for a blood
infection this morning. He is allergic to the best antibiotic for
this infection, but they have decided to give it to him anyway with
doses of Benadryl to counteract the side effects, and then they give
the antibiotic slowly
He also is being checked for a virus. We won't know about that until tomorrow.
His oxygen saturation levels are at the lowest levels that I have ever
seen on a consistent basis, even though we have increased his
ventilator to the maximum support. We are beginning, as I write this,
a second heart medication to force his heart to beat harder in order
to help force out the CO2. Praise God that we have a good nurse
tonight, and Endurance is her only patient.
Thank you for bringing Endurance before the Throne of Grace.
For Christ and His Kingdom,
Mike (for Mike & Heather)
P.S. The Ethics Committee situation was blessed by God. I won't
waste your time with the details, but our Lord is good. Romans 8:28
definitely applies in this situation.
Update....
So much has happened to Endurance that I will probably forget things, but I'll do my best. Endurance has a blood infection. In fact, the Cardiac ICU's record for no infections was 163 days until little Endurance. Sorry CICU, back to zero! They don't know for sure yet what exact infection he has, but are giving him 3 antibiotics to fight it. The pharmacist was quite concerned about his kidneys, so they are watching this as well.
This infection has been testing all of Endurance's caregivers, as they are having to come up with ideas on what to do to control his numbers and keep him alive. As one doctor said, "we have a few things in our back pocket." Today I told her that her back pocket must be pretty big as they keep coming up with stuff.
The doctors want Endurance's "sats" to be between 75-85%. A normal person with no problems would most likely have 100%. Yesterday his sats at best were in the low 60's and that wasn't for long...mostly in the 40's. At one time while we were talking to the doctor, his sats starting dropping to 0! Oh boy did that make our hearts leap. Due to his poor sats, Endurance is now getting nitric oxide.
The doctors were also very concerned about Endurance's body trying to fight his infection and not being able to. High concerns of him passing away. (One of our favorite doctors said that Monday night she would go home and not worry about Endurance, yet tonight (Tues) she would be.) So, since his sats were too low, fighting a fever, and lots of body movement, they are now giving him an IV drip of something called vecuronium (vec), which paralyzes him. If you were to just walk in the room, you'd think he was dead. Even his eyes don't move, yet his heart is not disturbed from this. He is also in an upright/reclined position.
Endurance was on a "vec holiday" as they put it, today. A small trial to see what he does when he "wakes up." It took a bit over an hour for him to come off the meds. He seemed to do fine for about 30 minutes. Then his sats dropped and the nurse turned the IV back on.
Endurance is also in isolation for upper respiratory virus indications. For this, they can give him nothing. He just has to ride this one out.
Also, Endurance's heart has gotten bigger since yesterday. He's has two echocaridograms. It's rather floppy and slow.
Endurance has been given so many medications these past two days as well.
He's not out of the woods, but we praise God that Endurance is still with us and everything that his nurses and doctors are doing seem to be for his best interest. We see God's handiwork in all of this and clinging to Him even more.
Thank you for your prayers! Sorry for any grammatical errors, fellow homeschooler! My brain is quite fogged! :)
Endurance is struggling right now. He was confirmed for a blood
infection this morning. He is allergic to the best antibiotic for
this infection, but they have decided to give it to him anyway with
doses of Benadryl to counteract the side effects, and then they give
the antibiotic slowly
He also is being checked for a virus. We won't know about that until tomorrow.
His oxygen saturation levels are at the lowest levels that I have ever
seen on a consistent basis, even though we have increased his
ventilator to the maximum support. We are beginning, as I write this,
a second heart medication to force his heart to beat harder in order
to help force out the CO2. Praise God that we have a good nurse
tonight, and Endurance is her only patient.
Thank you for bringing Endurance before the Throne of Grace.
For Christ and His Kingdom,
Mike (for Mike & Heather)
P.S. The Ethics Committee situation was blessed by God. I won't
waste your time with the details, but our Lord is good. Romans 8:28
definitely applies in this situation.
Update....
So much has happened to Endurance that I will probably forget things, but I'll do my best. Endurance has a blood infection. In fact, the Cardiac ICU's record for no infections was 163 days until little Endurance. Sorry CICU, back to zero! They don't know for sure yet what exact infection he has, but are giving him 3 antibiotics to fight it. The pharmacist was quite concerned about his kidneys, so they are watching this as well.
This infection has been testing all of Endurance's caregivers, as they are having to come up with ideas on what to do to control his numbers and keep him alive. As one doctor said, "we have a few things in our back pocket." Today I told her that her back pocket must be pretty big as they keep coming up with stuff.
The doctors want Endurance's "sats" to be between 75-85%. A normal person with no problems would most likely have 100%. Yesterday his sats at best were in the low 60's and that wasn't for long...mostly in the 40's. At one time while we were talking to the doctor, his sats starting dropping to 0! Oh boy did that make our hearts leap. Due to his poor sats, Endurance is now getting nitric oxide.
The doctors were also very concerned about Endurance's body trying to fight his infection and not being able to. High concerns of him passing away. (One of our favorite doctors said that Monday night she would go home and not worry about Endurance, yet tonight (Tues) she would be.) So, since his sats were too low, fighting a fever, and lots of body movement, they are now giving him an IV drip of something called vecuronium (vec), which paralyzes him. If you were to just walk in the room, you'd think he was dead. Even his eyes don't move, yet his heart is not disturbed from this. He is also in an upright/reclined position.
Endurance was on a "vec holiday" as they put it, today. A small trial to see what he does when he "wakes up." It took a bit over an hour for him to come off the meds. He seemed to do fine for about 30 minutes. Then his sats dropped and the nurse turned the IV back on.
Endurance is also in isolation for upper respiratory virus indications. For this, they can give him nothing. He just has to ride this one out.
Also, Endurance's heart has gotten bigger since yesterday. He's has two echocaridograms. It's rather floppy and slow.
Endurance has been given so many medications these past two days as well.
He's not out of the woods, but we praise God that Endurance is still with us and everything that his nurses and doctors are doing seem to be for his best interest. We see God's handiwork in all of this and clinging to Him even more.
Thank you for your prayers! Sorry for any grammatical errors, fellow homeschooler! My brain is quite fogged! :)
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