Monday, April 9, 2012
Thursday, April 5, 2012
Where to start?
Hello again,
I am going to try to give you the shortest version of the many events that happened with Jude today. I hope I can clearly share with you what has happened...I am just so tired.
This morning Jude's blood gas was so-so and in rounds we discussed adjusting the settings on his ventilator to support him better. Jude seemed to be in a really good place with his sedation- just enough to keep him calm, but not too much so that he couldn't be somewhat alert and aware. I spent the first half of my visit talk to him and stroking his little head. Jude's nurse (Erin, who we love!) told me that I could hold him later in the afternoon. I was thrilled that I could snuggle with him despite the fact that he has to be on the ventilator. So, we planned for me to hold Jude after I ate lunch and I left the NNICU for an hour or so.
I returned to the NNICU and the unit secretary told me that I could go to Jude's bedside but that Erin wanted me to wait to enter his bed space because they were getting a routine X-ray. I stopped for just a few minutes to wash my hands and spoke to a few nurses as I made my way back to Jude's bed. In the time between when I entered the NNICU and when I arrived at the area near Jude's bed Erin picked Jude up to allow for the X-ray equipment to be placed under Jude. When she picked Jude up he began to freak out. So much so that he began to bear down and block his airway. Therefore the ventilator was unable to provide Jude the support he needs to breathe. As I turned the corner, I saw them "bagging" Jude and giving him breaths with the manual ventilator. I could just see his little legs kicking...he was fighting BIG time. They were able to successfully ventilate him with the "bag" and then place him back on the ventilator. But as soon as they placed him back on the ventilator blocked his own airway again and they had to "bag" him again! It was scary to watch...but I was also so thankful for the composure, speed and skills that the nurse and reparatory therapists demonstrated as they worked on Jude. In the end they were able to get him back on the ventilator again. I visited with him and hoped that he would settle down and rest.
After a half hour or so, the results of Judes X-ray came up and the doctor came by to share with me that Jude's right lung (his strong one) had collapsed and that the incident that just occurred likely was caused by this. In response to Jude's lung collapse they decided to place Jude's right side up and deliver CPT to Jude's chest in hopes of opening up his lung so that it could start working again. They got another gas and it was the best blood gas that Jude has had in quite some time! In face in was within the range of his normal baseline. We were in shock! Thank you to all of you who lifted up prayers for Jude after receiving the email my mom sent asking for prayer. Needless to say we were thrilled with the improved blood gas.
So, I headed back to the house and celebrated by kiddo bowling and cupcakes with Annabelle and my mom. (We had a great time!) But as we were getting out of the van, I got a phone call from the NNICU on my cell phone. It was one of Jude's doctors and she shared with me that Jude's had extubated (removed his ventilator tube) himself and that they had to "bag" him again. My heart dropped. Thankfully, he handled being bagged well and they were able to sucessfully re-intubate him again without much trouble. Jude was resting again and they planned to check another blood gas after he settled and rested again.
Jude's next blood gas was the best blood gas that we've had since before his Broviac surgery...what a miracle! Despite all of the craziness that Jude experienced today he ended the day on a good note. We are thankful and hopeful that Jude will continue to have good blood gases and that the ventilator will continue to help him.
Please pray for Jude. He is still very, very sick. And we are still worried for him. There are so many things we want to ask for you to pray for....but tonight I want to ask you to pray for Jude as you feel led. Will you share with us the specific things that you are praying for? It will give us great encouragement to know what the Lord is bringing to all of you to pray for. We know the Lord is hearing all of our prayers.
God bless you all.
I am going to try to give you the shortest version of the many events that happened with Jude today. I hope I can clearly share with you what has happened...I am just so tired.
This morning Jude's blood gas was so-so and in rounds we discussed adjusting the settings on his ventilator to support him better. Jude seemed to be in a really good place with his sedation- just enough to keep him calm, but not too much so that he couldn't be somewhat alert and aware. I spent the first half of my visit talk to him and stroking his little head. Jude's nurse (Erin, who we love!) told me that I could hold him later in the afternoon. I was thrilled that I could snuggle with him despite the fact that he has to be on the ventilator. So, we planned for me to hold Jude after I ate lunch and I left the NNICU for an hour or so.
I returned to the NNICU and the unit secretary told me that I could go to Jude's bedside but that Erin wanted me to wait to enter his bed space because they were getting a routine X-ray. I stopped for just a few minutes to wash my hands and spoke to a few nurses as I made my way back to Jude's bed. In the time between when I entered the NNICU and when I arrived at the area near Jude's bed Erin picked Jude up to allow for the X-ray equipment to be placed under Jude. When she picked Jude up he began to freak out. So much so that he began to bear down and block his airway. Therefore the ventilator was unable to provide Jude the support he needs to breathe. As I turned the corner, I saw them "bagging" Jude and giving him breaths with the manual ventilator. I could just see his little legs kicking...he was fighting BIG time. They were able to successfully ventilate him with the "bag" and then place him back on the ventilator. But as soon as they placed him back on the ventilator blocked his own airway again and they had to "bag" him again! It was scary to watch...but I was also so thankful for the composure, speed and skills that the nurse and reparatory therapists demonstrated as they worked on Jude. In the end they were able to get him back on the ventilator again. I visited with him and hoped that he would settle down and rest.
After a half hour or so, the results of Judes X-ray came up and the doctor came by to share with me that Jude's right lung (his strong one) had collapsed and that the incident that just occurred likely was caused by this. In response to Jude's lung collapse they decided to place Jude's right side up and deliver CPT to Jude's chest in hopes of opening up his lung so that it could start working again. They got another gas and it was the best blood gas that Jude has had in quite some time! In face in was within the range of his normal baseline. We were in shock! Thank you to all of you who lifted up prayers for Jude after receiving the email my mom sent asking for prayer. Needless to say we were thrilled with the improved blood gas.
So, I headed back to the house and celebrated by kiddo bowling and cupcakes with Annabelle and my mom. (We had a great time!) But as we were getting out of the van, I got a phone call from the NNICU on my cell phone. It was one of Jude's doctors and she shared with me that Jude's had extubated (removed his ventilator tube) himself and that they had to "bag" him again. My heart dropped. Thankfully, he handled being bagged well and they were able to sucessfully re-intubate him again without much trouble. Jude was resting again and they planned to check another blood gas after he settled and rested again.
Jude's next blood gas was the best blood gas that we've had since before his Broviac surgery...what a miracle! Despite all of the craziness that Jude experienced today he ended the day on a good note. We are thankful and hopeful that Jude will continue to have good blood gases and that the ventilator will continue to help him.
Please pray for Jude. He is still very, very sick. And we are still worried for him. There are so many things we want to ask for you to pray for....but tonight I want to ask you to pray for Jude as you feel led. Will you share with us the specific things that you are praying for? It will give us great encouragement to know what the Lord is bringing to all of you to pray for. We know the Lord is hearing all of our prayers.
God bless you all.
Wednesday, April 4, 2012
My sweet boy
Hi friends,
By now many of you know (from my Facebook post) that Jude was intubated today and placed on the conventional ventilator.
When I woke up this morning, I had no idea that this was in the cards for my son. But now that the day has passed and Jude is back on the ventilator I am quite confident that this was the best choice for Jude.
If you've been following Jude's story over the last week or so, you may have noticed that Jude has continued to struggle more and more each day. Every day they've had to increase his settings on the Vapotherm and everyday we grew more and more nervous about Jude's respiratory status.
This morning, when I went to rounds I learned that Jude had another poor blood gas in the early a.m. hours and that a few other test results were a little concerning. I was also told that there would be a meeting between many of Jude's doctors over the last few days to discuss his care for the rest of this week and over the holiday weekend. The attending doctor felt that it was very important to make sure that everyone who cared for Jude in the next few days were well informed about Jude's status and what would be best for his care.
After rounds I spent the day snuggling Jude and enjoying my time with him. He gave me several big smiles and I simply enjoyed looking into his big blue eyes. Despite his terrible cold and trouble breathing he was in fairly good spirits.
The doctors met in the early afternoon and after the meeting I was asked to join them to get a summary of what was discussed. (I hope to explain this as clearly as possible but I am oh so weary and my brain is just not working like it used to.) Basically, all of Jude's doctors are concerned about Jude's respiratory status. He has been trending towards respiratory distress over the last few days and it made them very nervous. As we shared before they were hopeful that they could avoid re-intubation but after the meeting it was decided that intubation would be the most beneficial to Jude at this time.
You see, Jude is quite a strong boy and he puts up a BIG fight then his nose or mouth is touched (This comes from the many times that tubes, tape, etc. were placed on or down his nose or throat.) and Jude is a BIG boy who requires quite a bit of sedation when anything is placed in his mouth or nose. And he has quite a tolerance for the meds that they've given him in the past. Because of the reasons I mentioned the doctors were fearful of how things might go if/when Jude experienced a respiratory episode or decline that required him to need a ventilator to breathe. They were worried that they would have to force the ventilator tube down his throat in an emergency situation and that Jude would put up a terrible fight which would make his respiratory emergency even worse. And on top of all that he would not have the amount of sedation that would make him most comfortable during such a procedure. And all of this combined could place Jude in an even more precarious state.
So, it was decided that Jude would be intubated again in a safe environment with sedation provided by an anesthesiologist. The hope is that this intubation and time spent on the ventilator will provide a way for Jude's lungs and body to rest and heal. As mentioned in earlier posts, the hope is that Jude will be able to tolerate breast milk feeds (which are being tolerated well thus far and will continue while Jude is intubated) which will help him grow bigger and stronger for his 2nd repair surgery. And this is still our hope! We want his lungs to recover as best as they can, we want him to grown bigger and stronger and we want his insides to heal as much as possible so that he can be as healthy as possible for surgery.
My heart just broke hearing this news. I was so sad that the boy who was smiling, kicking and looking into my eyes this morning would soon return to a sedated state with a tube in his throat. I was also sad that Brian could not be with Jude before he was placed back on the ventilator. I hate that Brian has to be away from his son for several days of the week.
After the meeting, I walked back to Jude's bed and held him. I just wanted to spend a few more minutes with him before he was sedated. Honestly, I was and still am afraid that those many have been my last moments with Jude awake and alert. I felt like my heart was breaking in two. My heart ached for Brian too because I realized that Brian was not getting the opportunity to hold him before Jude was intubated again.
I left the NNICU and made a few phone calls to family...prayed for Jude again...got a drink and took a few minutes to catch my breath. Soon Jude's nurse, Meghan, appeared and let me know that his intubation went smoothly and that Jude was now safely on the ventilator. I went in to see him and he was resting comfortably. The plan for now is to let Jude rest and make sure that he is medicated enough so that he will not pull out his ventilator tube.
Please pray that the resting that Jude will do on the ventilator will be effective and restoring. Please pray that the doctors are able to find a happy place for the amount of medication that Jude will need to keep him from extubating himself but that he will also still be able to be awake and somewhat aware. Please pray for his comfort too. Please pray that he will be protected from any potential infection or illness. Please pray that his feeds will continue to go well and that he will grow bigger and stronger than before. Please pray that Jude will feel the Lord with him always.
And if you can, please pray for our family. We are truly weary. We are weary in so many areas of our lives. The Lord is truly carrying us through each day. We miss each other so much...the weekly separation is tough. Annabelle misses seeing us when we are with Jude at the hospital. We miss her too. Please pray that when we rest that our rest is especially restful. Please pray that when we spend time together that it is full enjoyed. Please pray that we will feel the Lord with us always.
I hope I've conveyed today's events as best as possible. We truly, truly feel blessed to be covered in prayer. It is such a gift to know that when we ask you to pray we know that you will go to the Lord on our behalf. Romans 8:26 says: "Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words." I feel like the Spirit is also working in all of you to pray for us in ways that we've not thought of. Thank you for faithfully going to the Lord for us.
Until our next blog...
Rose
By now many of you know (from my Facebook post) that Jude was intubated today and placed on the conventional ventilator.
When I woke up this morning, I had no idea that this was in the cards for my son. But now that the day has passed and Jude is back on the ventilator I am quite confident that this was the best choice for Jude.
If you've been following Jude's story over the last week or so, you may have noticed that Jude has continued to struggle more and more each day. Every day they've had to increase his settings on the Vapotherm and everyday we grew more and more nervous about Jude's respiratory status.
This morning, when I went to rounds I learned that Jude had another poor blood gas in the early a.m. hours and that a few other test results were a little concerning. I was also told that there would be a meeting between many of Jude's doctors over the last few days to discuss his care for the rest of this week and over the holiday weekend. The attending doctor felt that it was very important to make sure that everyone who cared for Jude in the next few days were well informed about Jude's status and what would be best for his care.
After rounds I spent the day snuggling Jude and enjoying my time with him. He gave me several big smiles and I simply enjoyed looking into his big blue eyes. Despite his terrible cold and trouble breathing he was in fairly good spirits.
The doctors met in the early afternoon and after the meeting I was asked to join them to get a summary of what was discussed. (I hope to explain this as clearly as possible but I am oh so weary and my brain is just not working like it used to.) Basically, all of Jude's doctors are concerned about Jude's respiratory status. He has been trending towards respiratory distress over the last few days and it made them very nervous. As we shared before they were hopeful that they could avoid re-intubation but after the meeting it was decided that intubation would be the most beneficial to Jude at this time.
You see, Jude is quite a strong boy and he puts up a BIG fight then his nose or mouth is touched (This comes from the many times that tubes, tape, etc. were placed on or down his nose or throat.) and Jude is a BIG boy who requires quite a bit of sedation when anything is placed in his mouth or nose. And he has quite a tolerance for the meds that they've given him in the past. Because of the reasons I mentioned the doctors were fearful of how things might go if/when Jude experienced a respiratory episode or decline that required him to need a ventilator to breathe. They were worried that they would have to force the ventilator tube down his throat in an emergency situation and that Jude would put up a terrible fight which would make his respiratory emergency even worse. And on top of all that he would not have the amount of sedation that would make him most comfortable during such a procedure. And all of this combined could place Jude in an even more precarious state.
So, it was decided that Jude would be intubated again in a safe environment with sedation provided by an anesthesiologist. The hope is that this intubation and time spent on the ventilator will provide a way for Jude's lungs and body to rest and heal. As mentioned in earlier posts, the hope is that Jude will be able to tolerate breast milk feeds (which are being tolerated well thus far and will continue while Jude is intubated) which will help him grow bigger and stronger for his 2nd repair surgery. And this is still our hope! We want his lungs to recover as best as they can, we want him to grown bigger and stronger and we want his insides to heal as much as possible so that he can be as healthy as possible for surgery.
My heart just broke hearing this news. I was so sad that the boy who was smiling, kicking and looking into my eyes this morning would soon return to a sedated state with a tube in his throat. I was also sad that Brian could not be with Jude before he was placed back on the ventilator. I hate that Brian has to be away from his son for several days of the week.
After the meeting, I walked back to Jude's bed and held him. I just wanted to spend a few more minutes with him before he was sedated. Honestly, I was and still am afraid that those many have been my last moments with Jude awake and alert. I felt like my heart was breaking in two. My heart ached for Brian too because I realized that Brian was not getting the opportunity to hold him before Jude was intubated again.
I left the NNICU and made a few phone calls to family...prayed for Jude again...got a drink and took a few minutes to catch my breath. Soon Jude's nurse, Meghan, appeared and let me know that his intubation went smoothly and that Jude was now safely on the ventilator. I went in to see him and he was resting comfortably. The plan for now is to let Jude rest and make sure that he is medicated enough so that he will not pull out his ventilator tube.
Please pray that the resting that Jude will do on the ventilator will be effective and restoring. Please pray that the doctors are able to find a happy place for the amount of medication that Jude will need to keep him from extubating himself but that he will also still be able to be awake and somewhat aware. Please pray for his comfort too. Please pray that he will be protected from any potential infection or illness. Please pray that his feeds will continue to go well and that he will grow bigger and stronger than before. Please pray that Jude will feel the Lord with him always.
And if you can, please pray for our family. We are truly weary. We are weary in so many areas of our lives. The Lord is truly carrying us through each day. We miss each other so much...the weekly separation is tough. Annabelle misses seeing us when we are with Jude at the hospital. We miss her too. Please pray that when we rest that our rest is especially restful. Please pray that when we spend time together that it is full enjoyed. Please pray that we will feel the Lord with us always.
I hope I've conveyed today's events as best as possible. We truly, truly feel blessed to be covered in prayer. It is such a gift to know that when we ask you to pray we know that you will go to the Lord on our behalf. Romans 8:26 says: "Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words." I feel like the Spirit is also working in all of you to pray for us in ways that we've not thought of. Thank you for faithfully going to the Lord for us.
Until our next blog...
Rose
Tuesday, April 3, 2012
Tidbits of prayer
Sweet friends,
Thank you for your prayers and encouragement since our last blog post.
We are truly heartbroken and feeling a little lost right now. Our worries are overwhelming and at times we will like we might break into pieces.
Please forgive us for "disappearing" a little bit...we are simply trying to process our recent news.
Despite our sadness we are also trying to remain hopeful....and in prayer with our Lord about Jude's life. We don't know what the future will hold but we know that the Lord will hold all of us!
Please keep praying for Jude daily. Please keep lifting our family up too. We are trusting the Lord for our steps each hour because without Him we cannot walk this journey.
Just a moment ago my mom came in and told me that she was feeling like the Lord was leading her to pray specifically that when Dr. Hebra finally has the opportunity to perform Jude's second repair surgery that he will be AMAZED by the amount of healing that has taken place inside Jude's body and that he will not face the obstacles that he was originally anticipating. My mom also felt that we should ask all of you to join us in praying for this specifically as well. Will you do this, please?
I am also asking the Lord to reveal other specific prayer requests to our family that we can share with you.
Jude is still sick today. His spirits seemed up today and he even gave me a few smiles while we snuggled. Warmed my heart and gave me hope that he might be starting to fight off his cold soon. He continues to have poor blood gases and other troubles but we are hopeful that he will pull out of this respiratory problem soon. They did start feeling him at 3ml per an hour into his intestine this afternoon and thus far he has tolerated them fine.
Finally, I wanted to share a song with you that the Lord brought to my mind today. The lyrics truly fit how we are feeling but also how Jude might be feeling if he could speak.
He Will Carry Me - Mark Schultz
I call, You hear me
I've lost it all
And it's more then I can bear
I feel so empty
You're strong, I'm weary
I'm holding on
But I feel like giving in
But still You're with me
(Pre-chorus and Chorus)
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
I know I'm broken
But You alone
Can mend this heart of mine
You're always with me
[
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
He will carry me
(Bridge)
And even though I feel so lonely
Like I have never been before
You never said it would be easy
But You said You'd see me through the storm
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
God bless you, friends. Thank you for traveling this long and hard journey with us.
Thank you for your prayers and encouragement since our last blog post.
We are truly heartbroken and feeling a little lost right now. Our worries are overwhelming and at times we will like we might break into pieces.
Please forgive us for "disappearing" a little bit...we are simply trying to process our recent news.
Despite our sadness we are also trying to remain hopeful....and in prayer with our Lord about Jude's life. We don't know what the future will hold but we know that the Lord will hold all of us!
Please keep praying for Jude daily. Please keep lifting our family up too. We are trusting the Lord for our steps each hour because without Him we cannot walk this journey.
Just a moment ago my mom came in and told me that she was feeling like the Lord was leading her to pray specifically that when Dr. Hebra finally has the opportunity to perform Jude's second repair surgery that he will be AMAZED by the amount of healing that has taken place inside Jude's body and that he will not face the obstacles that he was originally anticipating. My mom also felt that we should ask all of you to join us in praying for this specifically as well. Will you do this, please?
I am also asking the Lord to reveal other specific prayer requests to our family that we can share with you.
Jude is still sick today. His spirits seemed up today and he even gave me a few smiles while we snuggled. Warmed my heart and gave me hope that he might be starting to fight off his cold soon. He continues to have poor blood gases and other troubles but we are hopeful that he will pull out of this respiratory problem soon. They did start feeling him at 3ml per an hour into his intestine this afternoon and thus far he has tolerated them fine.
Finally, I wanted to share a song with you that the Lord brought to my mind today. The lyrics truly fit how we are feeling but also how Jude might be feeling if he could speak.
He Will Carry Me - Mark Schultz
I call, You hear me
I've lost it all
And it's more then I can bear
I feel so empty
You're strong, I'm weary
I'm holding on
But I feel like giving in
But still You're with me
(Pre-chorus and Chorus)
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
I know I'm broken
But You alone
Can mend this heart of mine
You're always with me
[
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
He will carry me
(Bridge)
And even though I feel so lonely
Like I have never been before
You never said it would be easy
But You said You'd see me through the storm
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
God bless you, friends. Thank you for traveling this long and hard journey with us.
"I wish I could tell you everything will be OK..."
Lest the title of this post totally totally mislead you, reader, please know on the front end of this post that Jude is stable and OK, relatively speaking. His condition hasn't really changed since our last post on Sunday: He's still on Vapotherm, but he's at risk for being re-intubated, as he has high levels of carbon dioxide in his blood, per the most recent blood gas analyses. We're hoping that his respiratory status will improve as he recovers from his cold over the next few days.
Despite there being no major changes to Jude's condition at the moment, Rose and I were jostled again yesterday.
Before Jude was born, based on what others had told us about having a child with CDH, we knew that his course of care would likely be complicated and that we as his parents would, in turn, ride something of an emotional roller coaster. But, of course, grasping something like that intellectually never prepares you for the experience of it.
Late yesterday morning, Rose and I sat down in the NICU conference room for daily rounds with the doctors and other staff taking care of him. We were subsequently informed that Dr. Hebra wouldn't be available to meet with us later in the afternoon for the previously planned care conference about Jude, but the attending physician informing us of this didn't know why he wouldn't be able to attend. Before Rose and I really had the opportunity to experience the letdown of this news and before any alternative meeting time could be brokered, Dr. Hebra rounded the corner into the conference room and took a seat at the table. We breathed a sigh of relief and were glad that we would get to have a conference after all, even if it was more of an impromptu one. I won't be able to do justice to all that was said over the next 25 or 30 minutes, but I'll do my best to recap the gist of the discussion.
Dr. Hebra began by quickly recapping Jude's course of care since the beginning. He conceded that because of the severity of Jude's defect (i.e. his hernia and what it caused) and the events that occurred while he was on ECMO (particularly the UVC leak and the resultant sepsis), he thought it was a miracle that he even came off of ECMO. (When a physician, let alone the chief of the pediatric surgery division, uses the word "miracle" when talking about your child, it has a certain impact.)
Then, he spoke briefly about what he discovered in Jude's body when he performed his first hernia repair surgery in January. In short, the surgery was very risky, and Jude could have died during the procedure. The abdominal infection that was rife in Jude's abdomen and chest cavities after his UVC leak left a lasting impact: Jude's insides, particularly his abdomen, were laced with adhesions, or bands of scar tissue. Jude's bowel was so matted and fused together with this scar tissue that Dr. Hebra, when I asked him questions in order to visualize what it looked like, described it as looking similar to a piece of raw meat. Moreover, Jude still had considerable amounts of infection in the peritoneal and pleural spaces of his abdomen and chest, which would later warrant nearly a month of targeted antibiotics to clear up. Despite all of these problems, Dr. Hebra was able to move the abdominal organs in Jude's chest at that time (bowel, part of the liver) back down to his abdomen and tenuously secure a biological AlloDerm patch to Jude's chest wall, thereby closing the hernia.
The AlloDerm patch was specifically chosen and necessary because Jude had still had infection in his body; however, the drawback to that kind of patch/mesh (as opposed to other patches/meshes) is that it is made of a biological material and will eventually break down and be absorbed into the body. The hope that we all harbored was that scar tissue would form over the surface of the patch, creating a de facto diaphragm or barrier between the chest and abdominal spaces. We all knew that reherniation, or the recurrence of a hole in Jude's diaphragm at the location of the patch, was likely, particularly with the passage of time. No one, however, was expecting the reherniation to occur so quickly.
Dr. Hebra then reiterated his plan for Jude: He wants to give him good nutrition and delay the surgery for a few weeks. For the moment, of course, Jude's rhinovirus (i.e. his cold) would rule him out as a surgical candidate anyways, unless surgery needed to be done in an emergency. But, beyond recuperating from his cold, Jude needs as much time as he can to grow, get good nutrition (hopefully from breast milk), and optimize his health before undergoing surgery again. Normally, if a child with Jude's condition were to reherniate but tolerate it reasonably well, then a surgeon might be inclined to wait quite some time to surgically repair the hernia. If Jude were such a child, then he might be a year old before his hernia would be repaired again. But, alas, Jude is not that child.
(Everything I've written up to this point is information that Rose and I already knew, even though my explanation of Dr. Hebra's logic for delaying surgery in the paragraph above is a gross oversimplification, at best. I'm going to try, in what follows, to sum up the rest of the conversation, although the impact of what was said probably skewed my perception of things a bit.)
It was at this point in the conversation that Dr. Hebra became a bit more sober in his expression. After concluding his recap of Jude's case and the plan for his care, he then went on to speak briefly about his prognosis.
When Dr. Hebra attempts the second hernia repair, he will probably enter through the chest alone instead of through both the chest and abdomen, as he did the first time. He expects there to be so much scar tissue in the abdomen that it would be difficult or problematic to try and gain access from that point. Entering solely through the chest, though, will pose a technical challenge from a surgical standpoint. Moreover, when he opens up the chest, he expects to find adhesions between Jude's various organs, including the lungs. It will be necessary to cut through the adhesions in order to move organs back into their proper place and then patch the hernia again. Unfortunately, cutting through scar tissue puts Jude at notable risk for bleeding, just like in the first surgery. Assuming that surgery is successful, Jude will suffer a big respiratory setback and will need time to recover. He'll be reintubated for the surgery, then he'll need to be weaned off the the respiratory support while he recovers in intensive care. His pain will be managed through medications, just like before, and he'll then need to be weaned off any narcotics or other drugs being used.
Dr. Hebra conceded, then, that he's worried about our little boy. Jude is far from a straightforward case of CDH repair, and the unique nature of his problems and the challenges that they pose have apparently prompted Dr. Hebra to discuss the case among his colleagues a number of times since he returned from vacation a week ago. There are those cases where he can offer honest encouragement of a good outcome -- our baby boy just isn't one of those. He leveled with us: "I wish I could tell you everything will be OK, but I just can't do that." Beyond doing all that he and the other medical staff could do, he said he'll be keeping his fingers crossed and continuing to pray for Jude.
I think it's fair to say that Rose and I were distressed and disoriented by all of this. We dared to hope that the time had passed when we had to say "if Jude comes home," and that we could now say, with some measure of assurance, "when Jude comes home." To go from if, to when, and now back to if is a hard pill to swallow. It felt the like the roller coaster had crested and was plunging down, yet again.
Please continue to pray for Jude's healing. Thank you all.
Despite there being no major changes to Jude's condition at the moment, Rose and I were jostled again yesterday.
Before Jude was born, based on what others had told us about having a child with CDH, we knew that his course of care would likely be complicated and that we as his parents would, in turn, ride something of an emotional roller coaster. But, of course, grasping something like that intellectually never prepares you for the experience of it.
Late yesterday morning, Rose and I sat down in the NICU conference room for daily rounds with the doctors and other staff taking care of him. We were subsequently informed that Dr. Hebra wouldn't be available to meet with us later in the afternoon for the previously planned care conference about Jude, but the attending physician informing us of this didn't know why he wouldn't be able to attend. Before Rose and I really had the opportunity to experience the letdown of this news and before any alternative meeting time could be brokered, Dr. Hebra rounded the corner into the conference room and took a seat at the table. We breathed a sigh of relief and were glad that we would get to have a conference after all, even if it was more of an impromptu one. I won't be able to do justice to all that was said over the next 25 or 30 minutes, but I'll do my best to recap the gist of the discussion.
Dr. Hebra began by quickly recapping Jude's course of care since the beginning. He conceded that because of the severity of Jude's defect (i.e. his hernia and what it caused) and the events that occurred while he was on ECMO (particularly the UVC leak and the resultant sepsis), he thought it was a miracle that he even came off of ECMO. (When a physician, let alone the chief of the pediatric surgery division, uses the word "miracle" when talking about your child, it has a certain impact.)
Then, he spoke briefly about what he discovered in Jude's body when he performed his first hernia repair surgery in January. In short, the surgery was very risky, and Jude could have died during the procedure. The abdominal infection that was rife in Jude's abdomen and chest cavities after his UVC leak left a lasting impact: Jude's insides, particularly his abdomen, were laced with adhesions, or bands of scar tissue. Jude's bowel was so matted and fused together with this scar tissue that Dr. Hebra, when I asked him questions in order to visualize what it looked like, described it as looking similar to a piece of raw meat. Moreover, Jude still had considerable amounts of infection in the peritoneal and pleural spaces of his abdomen and chest, which would later warrant nearly a month of targeted antibiotics to clear up. Despite all of these problems, Dr. Hebra was able to move the abdominal organs in Jude's chest at that time (bowel, part of the liver) back down to his abdomen and tenuously secure a biological AlloDerm patch to Jude's chest wall, thereby closing the hernia.
The AlloDerm patch was specifically chosen and necessary because Jude had still had infection in his body; however, the drawback to that kind of patch/mesh (as opposed to other patches/meshes) is that it is made of a biological material and will eventually break down and be absorbed into the body. The hope that we all harbored was that scar tissue would form over the surface of the patch, creating a de facto diaphragm or barrier between the chest and abdominal spaces. We all knew that reherniation, or the recurrence of a hole in Jude's diaphragm at the location of the patch, was likely, particularly with the passage of time. No one, however, was expecting the reherniation to occur so quickly.
Dr. Hebra then reiterated his plan for Jude: He wants to give him good nutrition and delay the surgery for a few weeks. For the moment, of course, Jude's rhinovirus (i.e. his cold) would rule him out as a surgical candidate anyways, unless surgery needed to be done in an emergency. But, beyond recuperating from his cold, Jude needs as much time as he can to grow, get good nutrition (hopefully from breast milk), and optimize his health before undergoing surgery again. Normally, if a child with Jude's condition were to reherniate but tolerate it reasonably well, then a surgeon might be inclined to wait quite some time to surgically repair the hernia. If Jude were such a child, then he might be a year old before his hernia would be repaired again. But, alas, Jude is not that child.
(Everything I've written up to this point is information that Rose and I already knew, even though my explanation of Dr. Hebra's logic for delaying surgery in the paragraph above is a gross oversimplification, at best. I'm going to try, in what follows, to sum up the rest of the conversation, although the impact of what was said probably skewed my perception of things a bit.)
It was at this point in the conversation that Dr. Hebra became a bit more sober in his expression. After concluding his recap of Jude's case and the plan for his care, he then went on to speak briefly about his prognosis.
When Dr. Hebra attempts the second hernia repair, he will probably enter through the chest alone instead of through both the chest and abdomen, as he did the first time. He expects there to be so much scar tissue in the abdomen that it would be difficult or problematic to try and gain access from that point. Entering solely through the chest, though, will pose a technical challenge from a surgical standpoint. Moreover, when he opens up the chest, he expects to find adhesions between Jude's various organs, including the lungs. It will be necessary to cut through the adhesions in order to move organs back into their proper place and then patch the hernia again. Unfortunately, cutting through scar tissue puts Jude at notable risk for bleeding, just like in the first surgery. Assuming that surgery is successful, Jude will suffer a big respiratory setback and will need time to recover. He'll be reintubated for the surgery, then he'll need to be weaned off the the respiratory support while he recovers in intensive care. His pain will be managed through medications, just like before, and he'll then need to be weaned off any narcotics or other drugs being used.
Dr. Hebra conceded, then, that he's worried about our little boy. Jude is far from a straightforward case of CDH repair, and the unique nature of his problems and the challenges that they pose have apparently prompted Dr. Hebra to discuss the case among his colleagues a number of times since he returned from vacation a week ago. There are those cases where he can offer honest encouragement of a good outcome -- our baby boy just isn't one of those. He leveled with us: "I wish I could tell you everything will be OK, but I just can't do that." Beyond doing all that he and the other medical staff could do, he said he'll be keeping his fingers crossed and continuing to pray for Jude.
I think it's fair to say that Rose and I were distressed and disoriented by all of this. We dared to hope that the time had passed when we had to say "if Jude comes home," and that we could now say, with some measure of assurance, "when Jude comes home." To go from if, to when, and now back to if is a hard pill to swallow. It felt the like the roller coaster had crested and was plunging down, yet again.
Please continue to pray for Jude's healing. Thank you all.
Sunday, April 1, 2012
Jude is still off the ventilator!
Hi friends,
Thank you for faithfully praying for Jude today and over the last few days.
Here is a quick update about today:
Please pray that Jude does not need to go on the ventilator tonight. He is still struggling with his breathing and is sitting at very high settings on the Vapotherm. We love our little man so much!
Well, I am heading to bed...big day tomorrow. God bless all of you!
Thank you for faithfully praying for Jude today and over the last few days.
Here is a quick update about today:
- Jude continues to remain very uncomfortable. He is either asleep or awake and crying. It is so hard to watch him struggle all day long. He is exhausted. I really did not want to put him back in his bed when we left this evening. I told Brian that I wished that I could just stay all night long and hold him. I just want him to know that he is safe and loved.
- Jude continues to have blood gas results that are concerning but they did improve a little bit today. We are hopeful and thankful for better results.
- Jude received Albuterol treatments every four hours today and suctioning to help keep his airway open. (this will continue overnight and likely tomorrow) We are happy that Jude avoided intubation today but we are still worried that he could end up intubated. Please continue to pray that his lungs will grow stronger and healthier.
- Earlier today, I noticed that Jude had quite a bit of boogers (sorry for the yucky details!) so I threw out the idea that maybe he had a cold. The docs ordered a test to determine if Jude has a virus. And just a few minutes ago we got a call letting us know that Jude does in fact have a cold. This is certainly contributing to Jude's respiratory distress and as of yet, we don't know exactly what this will mean for Jude's care over the next few days or what this will mean for Jude's potential 2nd repair surgery. But we hope to know more after our meeting with the doctors and nurses tomorrow. Please continue to pray for this meeting.
Please pray that Jude does not need to go on the ventilator tonight. He is still struggling with his breathing and is sitting at very high settings on the Vapotherm. We love our little man so much!
Well, I am heading to bed...big day tomorrow. God bless all of you!
Prayers for Jude's breathing
Good morning,
Just a quick post to ask for more prayers for Jude's breathing. I spoke with Jude's nurse this morning and overnight they had to increase his settings more on the Vapotherm. He is getting dangerously close to being reintubated.
Please join us in praying that Jude will not need to be intubated. Pray for his lungs to gain the strength that they need.
Brian is about to head to the hospital to be with Jude (I am with Annabelle) and to round with the doctors. Please pray that good decisions will be made for Jude's care.
We are so worried for Jude right now. Please pray.
Just a quick post to ask for more prayers for Jude's breathing. I spoke with Jude's nurse this morning and overnight they had to increase his settings more on the Vapotherm. He is getting dangerously close to being reintubated.
Please join us in praying that Jude will not need to be intubated. Pray for his lungs to gain the strength that they need.
Brian is about to head to the hospital to be with Jude (I am with Annabelle) and to round with the doctors. Please pray that good decisions will be made for Jude's care.
We are so worried for Jude right now. Please pray.
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