A quick update: So sorry that we did not get to blog last night. We are all so tired. We moved to a different house yesterday too.
Jude finished the evening with a little more rest thanks to more powerful medication (and a little extra love from one of our favorite nurses, Kayte). They are still not sure what is causing his pain/agitation. Jude's neonatologist and surgeon will be meeting today to discuss the plan for Jude. I hope to update you later this evening on how things are going.
We are so thankful for you prayers for Jude. Yesterday was truly a difficult day. Our hearts were breaking knowing that Jude was so uncomfortable. Please pray that he can be pain-free and that he can get some good quality rest. He hasn't been able to nap like a normal baby in quite some time.
Showing posts with label April 2012. Show all posts
Showing posts with label April 2012. Show all posts
Tuesday, April 24, 2012
Monday, April 23, 2012
Pain
Jude is in a lot of pain right now...doctors are working to find the source of his pain. The pain medication they've been giving him isn't even touching his pain. Please pray for our sweet Jude. There is going to be a GI study done this afternoon and a visit with the surgeons. We will update when we can. So thankful for any and all of your prayers....
Sunday, April 22, 2012
Up, Down, Up, Down
Hi, everyone. Brian here. Today was a little trough on this roller coaster ride with CDH, but the day ended on a slightly more positive note.
So here's the quick summary of the day's happenings:
After visiting with Jude yesterday, Rose and I thought he didn't seem quite right: He was pretty fussy, and even though he was eventually consolable, he spent about 90% of the time that he was awake crying. Consolation didn't come easily, even with the various tricks that we know to try with him.
When I spoke to Jude's nurse (Lesley -- one of our faves!) this morning, she also thought that he appeared pretty agitated; consequently, she requested an x-ray to determine if anything was amiss. Satisfied and in agreement with her that an x-ray sounded like a good idea, I hung up and prepared to go to the hospital.
Later, as Rose and I were pulling into the parking garage at the hospital, Lesley called us with some news. First, the x-ray made it pretty clear why Jude was out of sorts: His entire left lung was collapsed. (He also had some partial lung collapse on the upper lobe of his right lung, but he's had that for some time, so we weren't totally surprised by that.) Second, and more importantly, Jude's doctors had already conferred and felt that reintubation (i.e. putting a breathing tube down Jude's throat again) was probably going to be necessary to give him the respiratory support that he needed.
Throughout the morning, the flow (i.e. the pressure or force used to deliver air/oxygen) and oxygen settings on Jude's Vapotherm (high-flow nasal prongs) had been considerably increased to ensure that he had a sufficient amount of oxygen in his blood. (These increased settings made sense in light of the fact that Jude was effectively breathing with one lung.) However, it soon became clear that even the increased settings on Vapotherm wouldn't provide Jude the support that he would ultimately need. With increased settings, Jude still was taking 60-80 breaths per minute and had a heart rate ranging in the 180s and 190s. Reintubation would eventually be necessary to reinflate Jude's collapsed left lung and relieve him of all the extra work his body was necessarily doing to oxygenate and regulate the amount of carbon dioxide in his blood.
Eventually, a little after 1 pm this afternoon, the medical team assembled to perform Jude's reintubation, so Rose and I stepped out of the NICU for a while. When we returned a little later in the afternoon, Jude looked so much happier. He had been very fussy yesterday and this morning, so even though Rose and I certainly weren't excited that the much derided endotracheal tube had out of necessity reappeared, we nevertheless were happy to see that our little boy appeared to feel better. His big, blue eyes were agape, staring at his monitors, little toy frogs, and other items of interest that were nearby. And daddy got to hold him, which is always wonderful. :)
Another odd development from this morning was that Jude was seriously gettin' his poop on: He stooled 4 times in a little more than 5 hours. That might not sound weird, but Jude only stooled 5 times in the 24 hours before his morning poopfest. Naturally, this made us wonder whether something strange was going on with his gastrointestinal system. As the day wore on, a radiologist would later indicate in his report that Jude had more bowel loops in his chest than had previously been there. As yet, we still don't know whether the extra intestines in his chest caused him to stool so much; his feeds have been suspended for the moment. The feeds might be resumed tomorrow, so we'll hopefully have more details on that later.
For now, please pray with us that Jude's body responds well to being reintubated and that he continues to remain stable without any need for increased respiratory support. Pray that the Lord would strengthen and open his lungs. Also, please pray that his stomach and bowel continue to function well mechanically, even as they are in the wrong place and possibly oriented or turned in a way that doesn't foster the best functioning. Finally, please pray for the doctors and nurses taking care of Jude. His is a complicated case, and so they all need skill and wisdom that only God can provide.
Oh, and one more thing: In the next few days, Rose and I will be moving into another house nearby in Mount Pleasant. Here's the new address of the house we'll soon be occupying and where we'll also be receiving our mail:
We'll keep you all posted! Many, many thanks for your prayers, support, and love!
So here's the quick summary of the day's happenings:
After visiting with Jude yesterday, Rose and I thought he didn't seem quite right: He was pretty fussy, and even though he was eventually consolable, he spent about 90% of the time that he was awake crying. Consolation didn't come easily, even with the various tricks that we know to try with him.
When I spoke to Jude's nurse (Lesley -- one of our faves!) this morning, she also thought that he appeared pretty agitated; consequently, she requested an x-ray to determine if anything was amiss. Satisfied and in agreement with her that an x-ray sounded like a good idea, I hung up and prepared to go to the hospital.
Later, as Rose and I were pulling into the parking garage at the hospital, Lesley called us with some news. First, the x-ray made it pretty clear why Jude was out of sorts: His entire left lung was collapsed. (He also had some partial lung collapse on the upper lobe of his right lung, but he's had that for some time, so we weren't totally surprised by that.) Second, and more importantly, Jude's doctors had already conferred and felt that reintubation (i.e. putting a breathing tube down Jude's throat again) was probably going to be necessary to give him the respiratory support that he needed.
Throughout the morning, the flow (i.e. the pressure or force used to deliver air/oxygen) and oxygen settings on Jude's Vapotherm (high-flow nasal prongs) had been considerably increased to ensure that he had a sufficient amount of oxygen in his blood. (These increased settings made sense in light of the fact that Jude was effectively breathing with one lung.) However, it soon became clear that even the increased settings on Vapotherm wouldn't provide Jude the support that he would ultimately need. With increased settings, Jude still was taking 60-80 breaths per minute and had a heart rate ranging in the 180s and 190s. Reintubation would eventually be necessary to reinflate Jude's collapsed left lung and relieve him of all the extra work his body was necessarily doing to oxygenate and regulate the amount of carbon dioxide in his blood.
Eventually, a little after 1 pm this afternoon, the medical team assembled to perform Jude's reintubation, so Rose and I stepped out of the NICU for a while. When we returned a little later in the afternoon, Jude looked so much happier. He had been very fussy yesterday and this morning, so even though Rose and I certainly weren't excited that the much derided endotracheal tube had out of necessity reappeared, we nevertheless were happy to see that our little boy appeared to feel better. His big, blue eyes were agape, staring at his monitors, little toy frogs, and other items of interest that were nearby. And daddy got to hold him, which is always wonderful. :)
Another odd development from this morning was that Jude was seriously gettin' his poop on: He stooled 4 times in a little more than 5 hours. That might not sound weird, but Jude only stooled 5 times in the 24 hours before his morning poopfest. Naturally, this made us wonder whether something strange was going on with his gastrointestinal system. As the day wore on, a radiologist would later indicate in his report that Jude had more bowel loops in his chest than had previously been there. As yet, we still don't know whether the extra intestines in his chest caused him to stool so much; his feeds have been suspended for the moment. The feeds might be resumed tomorrow, so we'll hopefully have more details on that later.
For now, please pray with us that Jude's body responds well to being reintubated and that he continues to remain stable without any need for increased respiratory support. Pray that the Lord would strengthen and open his lungs. Also, please pray that his stomach and bowel continue to function well mechanically, even as they are in the wrong place and possibly oriented or turned in a way that doesn't foster the best functioning. Finally, please pray for the doctors and nurses taking care of Jude. His is a complicated case, and so they all need skill and wisdom that only God can provide.
Oh, and one more thing: In the next few days, Rose and I will be moving into another house nearby in Mount Pleasant. Here's the new address of the house we'll soon be occupying and where we'll also be receiving our mail:
1442 HEATHER DR
MT PLEASANT SC 29464-4556
Please continue to praise God with us for providing our housing in Mt. Pleasant through Crossbridge Ministries. The folks at Crossbridge have been awesome, and their assistance and love that they've shown to us has been one of the most amazing ways in which the Lord has shown us mercy as we've gone through trials over the past 5 months.
We'll keep you all posted! Many, many thanks for your prayers, support, and love!
Thursday, April 19, 2012
Oh Happy Day!
Hi friends!
Big News Tonight!
Jude was extubated today and he is now off the ventilator!
Yippee!!!!
We are thrilled! And so thankful that the Lord planned a
good day for Jude today.
Please join us in praying that Jude’s lungs will be able to
comfortably breathe on Vapotherm and that he will not need to be re-intubated
until his 2nd repair surgery.
I was able to snuggle with him for awhile today (yes, I am
feeling much better now!) and I snapped a few pictures of Jude after he was
placed on Vapotherm. He looked much more comfortable without that awful tube in his throat and he promptly fell
asleep.
Here is my sweet sleepy head:
Wednesday, April 18, 2012
Quick update 4/18/12
Just a quick update tonight: Jude's TP tube blocked off (clogged) last night and they were unable to feed him. So today he went down to imaging to have another TP tube placed and they were able to resume his feeds at the same settings!
I stayed away from Jude again today in hopes of kicking this cold and I'm thinking I may be well enough to see him tomorrow. (Lots of water, naps, saline, vitamin C, etc.)
He is doing well from a respiratory standpoint too! Hoping for some big changes tomorrow...
I stayed away from Jude again today in hopes of kicking this cold and I'm thinking I may be well enough to see him tomorrow. (Lots of water, naps, saline, vitamin C, etc.)
He is doing well from a respiratory standpoint too! Hoping for some big changes tomorrow...
Tuesday, April 17, 2012
Mommy sick day = Time with Nana Beth!
Hi friends,
Not a lot of new stuff to share about Jude today (which is
awesome!) because he has been steadily improving on the ventilator. This
morning he had yet another good blood gas and they weaned some of his settings
on the ventilator before rounds this morning. The doctors are planning to get
another blood gas in the morning and if things are still looking good they will
likely wean his settings even more! Praise our amazing God for pulling Jude out
of his scary respiratory sickness!!
I am sure that many of you are wondering what the next step
for Jude is going to be. Obviously we are hoping that Jude will continue to
climb to better and better settings on the ventilator and the doctors are
hoping that Jude will be extubated eventually.
So what happens if he is extubated?
Well, he will likely be on some sort of respiratory support…maybe
CPAP…maybe Vapotherm…or even oxygen nasal cannula.
But what next?
Well, that is still yet to be determined. IF Jude is extubated and he continues
to tolerate his feeds, he will likely continue to wait a little longer for his
second repair surgery. IF
Jude is unable to come off the ventilator, surgery will likely be sooner than
later.
How long will he wait?
At this point, we don’t know. We are sure that our questions
will be answered better as we see how Jude is performing from a respiratory
standpoint. What we do know is that we and the doctors want Jude to be as
healthy and strong as he can be before his surgery.
So what now?
We wait and PRAY!
Please pray especially for Jude’s lungs to grow stronger and
stronger. Pray that he will be able to come off of the ventilator and please
pray that he will be able to continue to tolerate his feeds.
Fun News:
I am still sick and staying away from my little man until I
can be sure that he won’t catch my cold. Of course, it is likely that I caught
my cold from him!
BUT!!
Nana Beth spent several hours with Jude today!!
She spent some time playing with him and then she held him
for a few hours. She was more than happy to spend a little extra time with our
little man and I am sure that he enjoyed it too.
Here is a little preview:
In other news:
Sweet little Lily had her repair surgery today and things
went really well! They were able to successfully repair her diaphragm without a
patch! This is a HUGE praise. Please pray for Lily’s healing and for her left
lung to GROW!
Jude’s sweet nurse, Meghan seems to be feeling better and
better each day. Please pray that she will be able to go home soon!
Thank you for continuing to pray for Lily and Meghan!
Monday, April 16, 2012
Sunday, April 15, 2012
Saturday, April 14, 2012
130 Days
Jude's 130 days old! He had a pretty good day today, relatively speaking. Here's a quick rundown on what's new:
- Jude's blood gas this morning was really good! Please join us in thanking God for this bit of good news and pray that his blood gases will continue to improve in the coming days.
- The amount of pressure that the ventilator is having to use in order to deliver the necessary volume of air to Jude's lungs was lower today as well, which is good to see and generally means that his lungs may be a little more compliant. Please pray with us that his lungs will continue to expand, that any secretions or mucus inhibiting lung expansion will disintegrate, and that the pressure necessary to ventilate Jude will decrease.
- Since Jude's experienced a little bit of respiratory improvement, his ventilator settings were turned down just a wee bit today. Please pray with us that the Lord will allow Jude to continually improve such that he can be further weaned on his vent settings.
- Jude will be getting a 10-day antibiotic treatment with a drug called nafcillin. A pulmonologist who consulted with Jude's doctor recently requested that some secretions from his lungs be collected and sent to the lab to be cultured. Today we learned that staphylococcus aureus bacteria has been grown from the aspirate/secretions that were drawn. There's a possibility that Jude's breathing tube is merely colonized with the bacteria and that he doesn't actually have an infection that's actively causing problems in his lungs, but his doctor nevertheless thinks that it's reasonable to treat him with antibiotics to ensure that any possible infection is eradicated. Please pray with us that God will use the antibiotics and any other means He chooses to rid Jude's body of infection and to strengthen him in the coming days and weeks.
- Jude is now being fed enough breast milk that his IV nutrition has been discontinued. That's great news! There is still room to increase his intake of breast milk, but he's getting quite a bit now. Jude's surgeon has been adamant that he get good nutrition, as it is purportedly important if Jude's second hernia repair surgery is to be successful. Please pray with us that the Lord will use the milk Jude's receiving to nourish and fortify his little body so that he can withstand any trauma or insult that he may encounter in the future.
- Rose and I have both had opportunities to hold our little boy in the last two days, and as always, it warms our hearts to embrace our child and remind him that he is dearly loved by his parents and his Heavenly Father. Please pray with us that God would take our imperfect gestures of love -- holding Jude, reading to him, holding his hand, speaking affectionately to him -- and use them for His glory and for Jude's benefit.
God has brought us into contact with many other families who are hurting and whose loved ones -- in many cases, children -- are experiencing physical suffering. Please pray with us that our Father would pour out His mercy on these families and that they would have a felt, ineffable sense of peace, even as they weather storms in their lives.
As always, thank you all for checking on us and praying with us and for us.
O LORD God of hosts, hear my prayer;
give ear, O God of Jacob!
(Psalm 84:8)
Thursday, April 12, 2012
Snuggle time
First, I want to ask all of you to join us in praying for baby Lily.
Lily has been fighting her CDH battle for 10 days. I met Lily's mommy (Liz) back in January and knew that Lily would be delivered at MUSC. Over the last several days, we've watched Liz and Grady (Lily's daddy) love on their sweet girl every day and we've been praying for Lily as she has been on ECMO most of her life. Lily was placed on ECMO about a day and a half after she was born and today they tried their first trial off! The trial went well and they are going to try another trial tomorrow. If all goes well, Lily will be taken off of ECMO and on the road to her repair surgery on Tuesday. Please pray for Lily's trial off tomorrow and for Liz and Grady as they await the results of this trial. Please cover them in prayer this weekend and next week as they face the CDH challenges that Lily will fight. Pray for strength and health for Lily! According to her mother Lily is a feisty little lady! We will keep you posted as we can.
As for Jude, he had an ok today. He started out the day with two not so great blood gases, so the doctors and nurses worked to come up with a new plan to try to tackle the struggles that Jude is facing with his breathing, CO2 and ventilator settings. He just seems "stuck" since he was intubated on Wednesday of last week. In rounds this morning, it was decided that Jude would receive a visit from the pulmonologist to see if a new set of eyes could come up with some new ideas on how to help Jude's body get rid of the "junk" that just won't seem to leave his chest. Jude sounds so congested and "junky" in his chest and has sounded like this for far to long. We hope to learn about the pulmonologists thoughts tomorrow morning. It was also decided that Jude would start receiving a Lasix dose every day again (he was receiving them every other day) in hopes of helping his eliminate some of the extra fluids that he is retaining in his chest. Additionally, they decided to do CPT which is a treatment from a respiratory therapist in which they essentially beat on Jude's chest to help break up the congestion. And lastly, Jude is spending a little more time on his tummy each day because this gives Jude's lungs an opportunity to lay in a different position and hopefully open up a little more. Will you join us in praying that these measures will be helpful in recruiting Jude's right (good, big) lung? We'd love to see his ventilator settings go down instead of up. Our poor little boy is so weary from being so sick.
Now for some good news: Tonight Jude will be receiving enough breast milk to no longer require TPN for nutrition! We are thrilled that he is tolerating his TP feeds so well! As you may remember, Jude's surgeon was hopeful that Jude could tolerate TP feeds so that he could grow bigger and healthier for surgery in the future. Praise God!
If Jude can get to a healthier respiratory status then he will be able to grow and get stronger for a future and safer 2nd repair surgery. If Jude's respiratory status does not improve then surgery may come sooner...but will be at a much higher risk. We continue to remain hopeful and prayerful!
This afternoon I had the benefit of being a part of Jude's tummy time...here are a few pictures of our snuggling!
Many thanks to Jude's nurse Lesley for snapping this pictures for me.
Such sweet moments.
Lily has been fighting her CDH battle for 10 days. I met Lily's mommy (Liz) back in January and knew that Lily would be delivered at MUSC. Over the last several days, we've watched Liz and Grady (Lily's daddy) love on their sweet girl every day and we've been praying for Lily as she has been on ECMO most of her life. Lily was placed on ECMO about a day and a half after she was born and today they tried their first trial off! The trial went well and they are going to try another trial tomorrow. If all goes well, Lily will be taken off of ECMO and on the road to her repair surgery on Tuesday. Please pray for Lily's trial off tomorrow and for Liz and Grady as they await the results of this trial. Please cover them in prayer this weekend and next week as they face the CDH challenges that Lily will fight. Pray for strength and health for Lily! According to her mother Lily is a feisty little lady! We will keep you posted as we can.
As for Jude, he had an ok today. He started out the day with two not so great blood gases, so the doctors and nurses worked to come up with a new plan to try to tackle the struggles that Jude is facing with his breathing, CO2 and ventilator settings. He just seems "stuck" since he was intubated on Wednesday of last week. In rounds this morning, it was decided that Jude would receive a visit from the pulmonologist to see if a new set of eyes could come up with some new ideas on how to help Jude's body get rid of the "junk" that just won't seem to leave his chest. Jude sounds so congested and "junky" in his chest and has sounded like this for far to long. We hope to learn about the pulmonologists thoughts tomorrow morning. It was also decided that Jude would start receiving a Lasix dose every day again (he was receiving them every other day) in hopes of helping his eliminate some of the extra fluids that he is retaining in his chest. Additionally, they decided to do CPT which is a treatment from a respiratory therapist in which they essentially beat on Jude's chest to help break up the congestion. And lastly, Jude is spending a little more time on his tummy each day because this gives Jude's lungs an opportunity to lay in a different position and hopefully open up a little more. Will you join us in praying that these measures will be helpful in recruiting Jude's right (good, big) lung? We'd love to see his ventilator settings go down instead of up. Our poor little boy is so weary from being so sick.
Now for some good news: Tonight Jude will be receiving enough breast milk to no longer require TPN for nutrition! We are thrilled that he is tolerating his TP feeds so well! As you may remember, Jude's surgeon was hopeful that Jude could tolerate TP feeds so that he could grow bigger and healthier for surgery in the future. Praise God!
If Jude can get to a healthier respiratory status then he will be able to grow and get stronger for a future and safer 2nd repair surgery. If Jude's respiratory status does not improve then surgery may come sooner...but will be at a much higher risk. We continue to remain hopeful and prayerful!
This afternoon I had the benefit of being a part of Jude's tummy time...here are a few pictures of our snuggling!
Such sweet moments.
Tuesday, April 10, 2012
Truckin' along
Happy Tuesday!
The last few days for Jude have been mostly uneventful from a medical perspective:
Thank you for all of the texts, emails, facebook messages, emails and comments on the blog to let us know how you are praying for Jude. It was SUCH an encouragement to hear of the many ways that you are feeling called to pray for Jude. He is COVERED in prayer!
Much love to all of you!
Are you on facebook? You can follow Jude's progress by joining this facebook group:
https://www.facebook.com/groups/219285074818496/
The last few days for Jude have been mostly uneventful from a medical perspective:
- Jude's blood gases have remained pretty steady of the last few days...not great, but not awful.
- Mostly, Jude's settings on the ventilator have stayed the same as well.
- His cold is mostly gone, but he still remains a little "junky" in his chest and continues to receive respiratory treatments to help with this issue.
- He is handling his breast milk TP feeds well thus far! He is about halfway to full feeds now. We are hopeful that he can tolerate full feeds well because these will help him grow bigger and stronger (and therefore in a better spot for his 2nd repair surgery)!
- Jude is pretty sedated now (because he is super strong and capable of extubating himself again) and therefore he is sleeping quite a bit. It is so sweet to snuggle him while sleeping but it is also wonderful to spend some time with him when he is awake. This morning I held him while he slept and this afternoon I gave him a washcloth bath and read books to him. It is such a joy to spend time with Jude.
- Please continue praying for Jude's adhesions to miraculously heal before surgery. Pray that the surgeon and doctors will be amazed by the amount of healing that has taken place.
- Please pray that Jude's cold and "junky" chest problems will resolve and allow for him to feel better. Pray that he will breathe easier this week!
- Please pray for better blood gases!
- Please pray that Jude's TP feeds will continue to go well and that his little body will grow strong!!
- Please pray for Jude developmentally. Before he was intubated again Jude was close to being on track developmentally for his age but we worry that he will struggle more now that he has experienced such a big setback. He is not able to enjoy PT or OT much right now. It breaks my heart that he can't get out of the bed and enjoy time "exercising" right now. He was once such an active little guy. Please pray that he will feel stimulated and interested in the world around him.
- Please pray for plenty of bonding time for Jude and us. I really feel like time spent snuggling and talking with Jude is very important right now.
Thank you for all of the texts, emails, facebook messages, emails and comments on the blog to let us know how you are praying for Jude. It was SUCH an encouragement to hear of the many ways that you are feeling called to pray for Jude. He is COVERED in prayer!
Much love to all of you!
Are you on facebook? You can follow Jude's progress by joining this facebook group:
https://www.facebook.com/groups/219285074818496/
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.
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