...stands for heart and kidney unit, where Joey now is. He's now out of the ICU!!! We're so excited about it, because he had to make significant progression to make it here. He now only has an NG tube for feeding and stick-on heart leads. It's amazing how empty his monitor is...only 4 lines instead of the 13 he had last week. (In fact, one of the four wasn't important enough back then so a full 10 monitors had been taken off!) He's breathing completely on his own -- no machine assist at all!
His next steps will be to continue weaning his meds, but most importantly remembering how to eat. It will be so awesome when he gets there. Obviously, he is still running the show, and everything is on his timeline, but he could potentially be released this weekend if everything goes stellarly. Saturday will be three full weeks on the inside; it would be nice to not have to extend it!
Wednesday, June 30, 2010
Tuesday, June 29, 2010
He got a suite...
More positive news today! He was moved farther from the nurses station to a room technically on the same CICU unit, but housing spill-over patients in the next ward. Basically, in this sort of intensive care, the most serious cases are right next to the nurses station for extra monitoring, so the farther you get from it, the better off you are! The new room doesn't have as many connections different life-support devices, nor is it up to the level of sterility for impromptu surgeries (like putting the ECMO in or taking it out.) So by moving him, they're saying that they don't foresee needing to use those additional devices! I know it might seem like we're grasping at straws here, but every little milestone seems humongous!
One other perk of the new room is that it has somewhat more lax rules. It has a table in it that we had lunch on today (the unit technically doesn't allow food in the patient rooms, but the unit where the spill-over is does...we went with the lax rules. :)) It also has a full-size couch, which is marginally more comfortable than the floor, but should Kate decide to stay to help nurse the little guy, she'll actually be able to sleep in something more than a recliner. Also, being off the main corridor makes the room a bit quieter, and fewer people poke their heads in...all good signs!
Speaking of feeding the little guy, he ate 10 ml of breastmilk from a bottle today! This was great news! Newborns typically have a hard time learning how to eat after being fed through the IV or feeding tube for the majority of their lives. Also, being on ECMO stresses certain neck muscles (look where those canules are inserted, and you'll see how it messes with his neck/throat) so that makes it harder to remember how to suck. On the flip side, he had a week of nursing, so simply remembering how is easier than learning for the first time like those babies whisked directly from the delivery room the the ICU. So the fact that he ate from a bottle was awesome! A baby his size on full feeds gets about 18 ml/hour, so a baby that nurses every 4 hours would get roughly 72 ml per feeding. So it was a small portion: only 1/7 of the amount he needs before he can feed completely without the feeding tube, but it's a start. They'll work on stopping the feeds before he eats to help him get hungry and then offer more and more each time.
We're doing well...let's hope that it continues to improve!
One other perk of the new room is that it has somewhat more lax rules. It has a table in it that we had lunch on today (the unit technically doesn't allow food in the patient rooms, but the unit where the spill-over is does...we went with the lax rules. :)) It also has a full-size couch, which is marginally more comfortable than the floor, but should Kate decide to stay to help nurse the little guy, she'll actually be able to sleep in something more than a recliner. Also, being off the main corridor makes the room a bit quieter, and fewer people poke their heads in...all good signs!
Speaking of feeding the little guy, he ate 10 ml of breastmilk from a bottle today! This was great news! Newborns typically have a hard time learning how to eat after being fed through the IV or feeding tube for the majority of their lives. Also, being on ECMO stresses certain neck muscles (look where those canules are inserted, and you'll see how it messes with his neck/throat) so that makes it harder to remember how to suck. On the flip side, he had a week of nursing, so simply remembering how is easier than learning for the first time like those babies whisked directly from the delivery room the the ICU. So the fact that he ate from a bottle was awesome! A baby his size on full feeds gets about 18 ml/hour, so a baby that nurses every 4 hours would get roughly 72 ml per feeding. So it was a small portion: only 1/7 of the amount he needs before he can feed completely without the feeding tube, but it's a start. They'll work on stopping the feeds before he eats to help him get hungry and then offer more and more each time.
We're doing well...let's hope that it continues to improve!
Monday, June 28, 2010
Joey's off the Ventilator!
So yesterday, Sunday, they took a chest X-ray and it was cloudy. That means that his lungs are "moist" and have to work harder to exchange oxygen. Because of this, they upped his meds to make him pee more in order to "dry them out". They were already set to start doing some more invasive lung intervention today when it didn't work because it's been cloudy for almost a week now. However, when they x-rayed him this morning, it was miraculously all crystal clear! All of the medical staff were surprised and happy.
So, this afternoon, they tested him again, and then removed the breathing tube. He was great with it! He had to suffer through Roddick loosing in the 5th set without making a sound and wanted to cheer with his aunt the Brazilian blowout of Chile. It was removed during halftime and he was able to squeak cheers out for the 3rd goal. :)
They're not positive that he'll stay off the ventilator because his heart small, so that it still has to work hard to pump the blood. Time is the only medicine for that. Obviously, we hope that this doesn't happen, but even if it does, it doesn't mean that he's backsliding.
We're all happy here for this, and Bella and Anastasia were their usual hooligans during mass tonight. Thanks for the prayers and we look forward to the day when we have three kids at mass again!
We're honored to be in all y'all's thoughts and prayers,
Pat, Kate, Bella, Anastasia, and Joey "Rocky" Tramma
So, this afternoon, they tested him again, and then removed the breathing tube. He was great with it! He had to suffer through Roddick loosing in the 5th set without making a sound and wanted to cheer with his aunt the Brazilian blowout of Chile. It was removed during halftime and he was able to squeak cheers out for the 3rd goal. :)
They're not positive that he'll stay off the ventilator because his heart small, so that it still has to work hard to pump the blood. Time is the only medicine for that. Obviously, we hope that this doesn't happen, but even if it does, it doesn't mean that he's backsliding.
We're all happy here for this, and Bella and Anastasia were their usual hooligans during mass tonight. Thanks for the prayers and we look forward to the day when we have three kids at mass again!
We're honored to be in all y'all's thoughts and prayers,
Pat, Kate, Bella, Anastasia, and Joey "Rocky" Tramma
Snuggle Time
These pictures are much easier on the eyes. I just HAD to share.
He loved his Daddy singing to him.
He cried in Mama's arms at first, but then rubbed his head against my bare arm and settled down.
He couldn't take his eyes off his Gram while she was talking to him!
He loved his Daddy singing to him.
He cried in Mama's arms at first, but then rubbed his head against my bare arm and settled down.
He couldn't take his eyes off his Gram while she was talking to him!
Sunday, June 27, 2010
Taking his sweet time
Hi Yall,
Joseph is doing well, progressing slowly but steadily. Apparently he must've been reading Aesop, cuz he's going "slow and steady to win the race." At least, that's how is it right now. We've stopped pretending to guess about tomorrow.
Last week he was showing off, breathing over the ventilator and keeping all his vital signs strong. They decided to extubate (remove the breathing tube). Unfortunately he changed his mind right after that and started struggling a lot. When his blood gasses started showing some trouble they reintubated. He of course immediately improved. Stubborn little guy.
They strongly suspect it had a lot to do with drug withdrawal. See, to manage pain and sedation the little guy has been on heavy narcotics for half his life! (I knew 50 year olds who could say that, but a 3 week old???) They weaned him very fast from the narcotics and gave him a medication (methadone) to ease that transition, but between the 2 meds in his system he ended up a little sleepy. They held a dose to help him wake up and when they took the breathing tube out the withdrawal symptoms caught up with him. Despite all the tubes and wires and fluid, THIS was the worst and hardest thing I have seen so far. My heart broke for the little guy, but they gave him some more meds, balanced him out, and he calmed down. Plus, he had breathing help again.
He's right back to breathing over the ventilator, opening his eyes, grabbing hands, following voices with his eyes. He watches the flashing lights on the IV pump and wakes up every time Daddy talks. This time, however, they are taking things a little slower. He's on the medication to help withdrawal symptoms, plus some extra Lasix to squeeze out extra fluid off his lungs. (the vent pushes air in by pressure which promotes a build-up of fluid in the lungs, which makes breathing harder. It's the biggest obstacle to removing the vent.) *maybe* he will be ready Tues to try again?
So far everything heart-related looks much better - just like we all had hoped! If he continues to do well there won't be any other heart surgery for a few months. Pat started a blog about all things Joey, for any who are interested in keeping up with the updates.
Keep those prayers coming - they are such a source of strength for all of us!
God Bless,
Pat, Kate and family
http://joeytramma.blogspot.com
http://lavitabella-tramma.blogspot.com
Joseph is doing well, progressing slowly but steadily. Apparently he must've been reading Aesop, cuz he's going "slow and steady to win the race." At least, that's how is it right now. We've stopped pretending to guess about tomorrow.
Last week he was showing off, breathing over the ventilator and keeping all his vital signs strong. They decided to extubate (remove the breathing tube). Unfortunately he changed his mind right after that and started struggling a lot. When his blood gasses started showing some trouble they reintubated. He of course immediately improved. Stubborn little guy.
They strongly suspect it had a lot to do with drug withdrawal. See, to manage pain and sedation the little guy has been on heavy narcotics for half his life! (I knew 50 year olds who could say that, but a 3 week old???) They weaned him very fast from the narcotics and gave him a medication (methadone) to ease that transition, but between the 2 meds in his system he ended up a little sleepy. They held a dose to help him wake up and when they took the breathing tube out the withdrawal symptoms caught up with him. Despite all the tubes and wires and fluid, THIS was the worst and hardest thing I have seen so far. My heart broke for the little guy, but they gave him some more meds, balanced him out, and he calmed down. Plus, he had breathing help again.
He's right back to breathing over the ventilator, opening his eyes, grabbing hands, following voices with his eyes. He watches the flashing lights on the IV pump and wakes up every time Daddy talks. This time, however, they are taking things a little slower. He's on the medication to help withdrawal symptoms, plus some extra Lasix to squeeze out extra fluid off his lungs. (the vent pushes air in by pressure which promotes a build-up of fluid in the lungs, which makes breathing harder. It's the biggest obstacle to removing the vent.) *maybe* he will be ready Tues to try again?
So far everything heart-related looks much better - just like we all had hoped! If he continues to do well there won't be any other heart surgery for a few months. Pat started a blog about all things Joey, for any who are interested in keeping up with the updates.
Keep those prayers coming - they are such a source of strength for all of us!
God Bless,
Pat, Kate and family
http://joeytramma.blogspot.com
http://lavitabella-tramma.blogspot.com
Friday, June 25, 2010
Pictures posted
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
You can also get here by clicking the link under "Pages" on the right.
Joey's pictures
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
Tuesday, June 15, 2010
Joseph Thomas makes his debut
... with a bang!
For all those who have not already heard, we had an adorable baby boy, Joseph Thomas Tramma, born June 4th. He was a healthy little infant who was acclimating to the excess snuggles and kisses from his sisters and loving every second of it. Well, mostly - I'm not sure he cared for the close encounters with a wrestling 18-month-old Anastasia...
Last week he began to have more and more trouble breathing. An x-ray revealed an enlarged heart, and an echocardiogram confirmed 3 separate cardiac defects. He is now at Children's Hospital in Washington DC, and will undergo surgery tomorrow (Tues) morning at 0730 to correct the first and most serious of the defects.
We are grateful that the newly ordained Fr Mick Kelly was able to baptize him a little after midnight Sunday morning, and his Godfather Andrew Bremberg was able to be there! Between his stubborn genes and the Grace of Baptism, Joey's a little Fighter!!!
We would greatly appreciate y'all's prayers both tomorrow for the surgery, but also in the recovery phase. We find such joy and comfort in the responses we have received already - thank God for our wonderful support system, and the power of prayer!!! We will try to update as much as possible.
Thank you ad God Bless!
In His Most Sacred Heart,
Kate and Patrick, Isabella, Anastasia, and Joey
For all those who have not already heard, we had an adorable baby boy, Joseph Thomas Tramma, born June 4th. He was a healthy little infant who was acclimating to the excess snuggles and kisses from his sisters and loving every second of it. Well, mostly - I'm not sure he cared for the close encounters with a wrestling 18-month-old Anastasia...
Last week he began to have more and more trouble breathing. An x-ray revealed an enlarged heart, and an echocardiogram confirmed 3 separate cardiac defects. He is now at Children's Hospital in Washington DC, and will undergo surgery tomorrow (Tues) morning at 0730 to correct the first and most serious of the defects.
We are grateful that the newly ordained Fr Mick Kelly was able to baptize him a little after midnight Sunday morning, and his Godfather Andrew Bremberg was able to be there! Between his stubborn genes and the Grace of Baptism, Joey's a little Fighter!!!
We would greatly appreciate y'all's prayers both tomorrow for the surgery, but also in the recovery phase. We find such joy and comfort in the responses we have received already - thank God for our wonderful support system, and the power of prayer!!! We will try to update as much as possible.
Thank you ad God Bless!
In His Most Sacred Heart,
Kate and Patrick, Isabella, Anastasia, and Joey
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