I put up a page with hospital pictures on it. They're somewhat graphic, so I linked to it instead of embedding them.
You can also get here by clicking the link under "Pages" on the right.
Joey's pictures
Showing posts with label ECMO. Show all posts
Showing posts with label ECMO. Show all posts
Friday, June 25, 2010
Wednesday, June 23, 2010
Joey and the Ventilator
Joey hit a bit of a wall today trying to come off the ventilator. He passed the challenge earlier today, which means they basically turn the machine off and let him breathe on his own. He did fine with that, but when it came time to take it out, he had troubles breathing. They left it out for a few hours, while he still struggled without the help, and then put the tube back in this evening. It's really disappointing to see him get stuck like that, but everyone assures us that it's quite normal. They put the tube back in and gave him a breathing treatment, and he's breathing like a champ again!
He's also having pain med withdrawals from the meds he got during his recovery time from the two procedures and coming off ECMO. My little boy has tons of needle sticks since his veins are small and it's hard to put lines in him, and he's getting methadone. We'll have to remind him when he's a teenager that his body doesn't handle narcotics very well!
Keep up the prayers! He'll rest tomorrow and continue to heal, and then they'll try again on Friday to take the tube out.
He's also having pain med withdrawals from the meds he got during his recovery time from the two procedures and coming off ECMO. My little boy has tons of needle sticks since his veins are small and it's hard to put lines in him, and he's getting methadone. We'll have to remind him when he's a teenager that his body doesn't handle narcotics very well!
Keep up the prayers! He'll rest tomorrow and continue to heal, and then they'll try again on Friday to take the tube out.
Sunday, June 20, 2010
Yay Joey!
This chapter in our story is titled "Joey and his Rocky Balboa Heart"
Joseph is completely OFF the bypass (ECMO) machine!!! The weaned him gradually friday night and he tolerated well, and yesterday he maintained well on the lowest setting. Yesterday afternoon they ran the normal "clamping test" during which they turned it off completely and took at echocardiogram of his heart, watching blood flow and pressure build-up through his valves. Everything looked good, so they took the cannulas OUT! Joey maintained good vital signs, good blood flow, good everything!!! A result of this was having to ligate (close off) one of the veins in his neck they had used for the ECMO cannula, but his body will form new pathways for bloodflow. (Isn't the body amazing???)
They will not make any definitive decisions about today until later, but they'll discuss removing the paralyzing medicine so he can start to move a very little and open his eyes and try to take breaths. He is still on the ventilator, but in another day they hope to wean that, too! It's a very gradual process, so as not to stress out his body too much. We want to see him slowly take over at a pace he can handle.
Keep those prayers going, including one of thanksgiving today~
Thanks and God Bless,
Kate, Pat, and Joey
Joseph is completely OFF the bypass (ECMO) machine!!! The weaned him gradually friday night and he tolerated well, and yesterday he maintained well on the lowest setting. Yesterday afternoon they ran the normal "clamping test" during which they turned it off completely and took at echocardiogram of his heart, watching blood flow and pressure build-up through his valves. Everything looked good, so they took the cannulas OUT! Joey maintained good vital signs, good blood flow, good everything!!! A result of this was having to ligate (close off) one of the veins in his neck they had used for the ECMO cannula, but his body will form new pathways for bloodflow. (Isn't the body amazing???)
They will not make any definitive decisions about today until later, but they'll discuss removing the paralyzing medicine so he can start to move a very little and open his eyes and try to take breaths. He is still on the ventilator, but in another day they hope to wean that, too! It's a very gradual process, so as not to stress out his body too much. We want to see him slowly take over at a pace he can handle.
Keep those prayers going, including one of thanksgiving today~
Thanks and God Bless,
Kate, Pat, and Joey
Friday, June 18, 2010
More about Joseph
Our Little Man is doing well today, Praise God!
Yesterday was VERY scary for us, as he underwent a very risky procedure to correct his aortic valve stenosis. Basically, the valve that allows the blood flow to the rest of his body was very small and hardened, and they needed to open it up with a little balloon. In the adult world this is a relatively minor procedure, but when the whole heart is the size of a walnut (!) well, it is very scary. Also, he is still on the bypass machine which further complicates matters. However, once again Joey showed us what a fighter he is! The doc went in with a very serious look on his face and returned several hours later with a smile! He will face many more of these over the next few months and years. Patrick asked the doc if he had a "frequent flyer punch card" but the doc told him there was no free coffee at the end. That's okay - I'll just take my son home, thanks.
Joey's goal for today is to continue to get more fluid off his lungs and out of the rest of his body as much and as quickly as possible. Once he is stable and dry they can begin weaning from the ECMO!!! Hopefully starting tonight!!! A complication he faces right now is because of the blood thinner (Heparin) he has to be on for the machine is causing a small bleed in his brain. Right now it is very small and contained, but the sooner he can ditch the machine and heparin, the sooner they can clot. Please pray they don't get any worse in the meantime!
Patrick and I are doing okay, thanks for all who've asked. We are trying to balance our time here with Joey and going home to see the girls and sleep in a bed. It is not easy, but as with all things we take it with faith. A HUGE thanks for the phone calls and meals, and as always ESPECIALLY the prayers.
I will try to answer any questions if you are interested, and will try to continue to update as often as possible.
Thanks and God Bless,
Pat, Kate, Bella, Anastasia, and Joey
St. Joseph, pray for him!
Yesterday was VERY scary for us, as he underwent a very risky procedure to correct his aortic valve stenosis. Basically, the valve that allows the blood flow to the rest of his body was very small and hardened, and they needed to open it up with a little balloon. In the adult world this is a relatively minor procedure, but when the whole heart is the size of a walnut (!) well, it is very scary. Also, he is still on the bypass machine which further complicates matters. However, once again Joey showed us what a fighter he is! The doc went in with a very serious look on his face and returned several hours later with a smile! He will face many more of these over the next few months and years. Patrick asked the doc if he had a "frequent flyer punch card" but the doc told him there was no free coffee at the end. That's okay - I'll just take my son home, thanks.
Joey's goal for today is to continue to get more fluid off his lungs and out of the rest of his body as much and as quickly as possible. Once he is stable and dry they can begin weaning from the ECMO!!! Hopefully starting tonight!!! A complication he faces right now is because of the blood thinner (Heparin) he has to be on for the machine is causing a small bleed in his brain. Right now it is very small and contained, but the sooner he can ditch the machine and heparin, the sooner they can clot. Please pray they don't get any worse in the meantime!
Patrick and I are doing okay, thanks for all who've asked. We are trying to balance our time here with Joey and going home to see the girls and sleep in a bed. It is not easy, but as with all things we take it with faith. A HUGE thanks for the phone calls and meals, and as always ESPECIALLY the prayers.
I will try to answer any questions if you are interested, and will try to continue to update as often as possible.
Thanks and God Bless,
Pat, Kate, Bella, Anastasia, and Joey
St. Joseph, pray for him!
Wednesday, June 16, 2010
Baby Joey Update
First, thank you all SO much for your prayers and support!!! To say it brings peace and hope in such a time would be an understatement. It is how I breathe. I did not truly grasp the power of prayer until I found myself unable to remember any words but still knew I was surrounded by spiritual help.
I wanted to update and clarify what is going on with Joseph, as a LOT has happened!!! Joey underwent surgery yesterday (was it really just yesterday???) Tues to correct his aortic artery. The surgery went very well and Joey tolerated it all quite nicely. We were there as he started to come out of anesthesia and he opened his eyes nice and big at the sound of Daddy's voice!
Last night, several hours post-op, his tiny little body was so tired of fighting. His blood pressure and oxygen levels dropped. Although they were able to stabalize him with medications, his lactic acid and creatinine levels were climbing, indicating that his heart was still not strong enough to provide adequate circulation. They monitored closely all night and this morning made the decision to place him on a heart/lung bypass machine (ECMO, for my medical friends.) Although he is not breathing on his own and is totally sedated and medically paralyzed, his own little heart is still beating, doing its best. This machine "simply" provides support by circulating and oxygenating some of his blood also. The good news is that his kidneys are already waking up, a sign that the machine is doing its job.
Tomorrow (Thurs) he will undergo a procedure to correct his aortic valve, which is much smaller than it should be. This is what they suspect caused the problem last night. He will remain on the ECMO throughout it, and until he stabalizes afterward. Their goal is to wean him from the machine gradually over the weekend. There is about a 60% success rate for kids coming off the bypass.
We have a VERY long road ahead of us, taking one day at a time. Sometimes one minute at a time. I am SO grateful for the prayers and practical support, an outpouring of LOVE and generosity. Joseph was baptized and confirmed Saturday by a brand-newly Ordained Fr. Mick Kelly, who has been back to visit us and offer his blessings and Holy Communion. This is a constant source of strength for us! Please continue to lift Joey up in prayer! I apologize to those whose calls I have not returned. Please know I appreciate your outreach anyways!
Thanks and God Bless,
In His Most Sacred Heart,
Kate, Patrick, Isabella, Anastasia, and Joey
I wanted to update and clarify what is going on with Joseph, as a LOT has happened!!! Joey underwent surgery yesterday (was it really just yesterday???) Tues to correct his aortic artery. The surgery went very well and Joey tolerated it all quite nicely. We were there as he started to come out of anesthesia and he opened his eyes nice and big at the sound of Daddy's voice!
Last night, several hours post-op, his tiny little body was so tired of fighting. His blood pressure and oxygen levels dropped. Although they were able to stabalize him with medications, his lactic acid and creatinine levels were climbing, indicating that his heart was still not strong enough to provide adequate circulation. They monitored closely all night and this morning made the decision to place him on a heart/lung bypass machine (ECMO, for my medical friends.) Although he is not breathing on his own and is totally sedated and medically paralyzed, his own little heart is still beating, doing its best. This machine "simply" provides support by circulating and oxygenating some of his blood also. The good news is that his kidneys are already waking up, a sign that the machine is doing its job.
Tomorrow (Thurs) he will undergo a procedure to correct his aortic valve, which is much smaller than it should be. This is what they suspect caused the problem last night. He will remain on the ECMO throughout it, and until he stabalizes afterward. Their goal is to wean him from the machine gradually over the weekend. There is about a 60% success rate for kids coming off the bypass.
We have a VERY long road ahead of us, taking one day at a time. Sometimes one minute at a time. I am SO grateful for the prayers and practical support, an outpouring of LOVE and generosity. Joseph was baptized and confirmed Saturday by a brand-newly Ordained Fr. Mick Kelly, who has been back to visit us and offer his blessings and Holy Communion. This is a constant source of strength for us! Please continue to lift Joey up in prayer! I apologize to those whose calls I have not returned. Please know I appreciate your outreach anyways!
Thanks and God Bless,
In His Most Sacred Heart,
Kate, Patrick, Isabella, Anastasia, and Joey
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