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...
Wednesday, April 18, 2012
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/
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