Emerson needs many prayers...

From her mom's most recent Facebook post:

After an end of week meeting with the PICU attending & transplant doctor, the message today is they do not believe Emerson can recover from this. And if she can, they say there's little to no chance of her returning to baseline. My heart is breaking... 

They also said, though, there are no decisions to be made right now. Emerson was not able to wean on the vent today & as such they've decided to stop trying. They'll let her rest through the weekend & see is she's able to show us any sign that she can overcome what ever is going on. If not, there will be decisions to be made next week... for the next 2 days, though, I'm going to try hard to put it out of my mind & concentrate, instead, on just loving her. 

In a new development, Emerson's right arm has swollen to nearly double it's s

ize and is turning black & blue. At the same time, the (very little) urine she's producing is dark orange. Apparently that can be the byproduct of muscle break down & the concern is she may have an infection in the muscle of her right arm. They're checking markers in her blood and urine & have scheduled an MRI for early this evening. It's unclear what exactly could be done about it, but it would certainly bring me some peace to better understand what is happening to her right now...

Beyond all that, I've not forgotten how many times we've received devastating news about Emerson in the past... and how many times she's proven the medical professionals wrong. This time feels different to me, but still I'm not giving up hope. I'm playing Disney piano music in her room & am trying the best I can to stay positive around her. We are in an incredibly difficult place and really appreciate all your prayers - if we storm the heavens & if He hears, maybe just maybe He'll let her stay with me a little longer... Thank you.

URGENT - Prayers needed for Emerson

Emerson is in urgent need of prayer. From her mom's Facebook update 3 hours ago:

Blood gases continue to look poor, base deficit is high (indicating a worsening metabolic acidosis), lactate is increasing. Emerson is very sick. The decision was made to take her to the OR stat to remove her line & look for new, temporary access. There is significant concern they won't find anything & cardiology is on standby to come in for a venous cut down, balloon placement, &/or creative wiring, as indicated, to achieve access. The team believes if they don't take her soon we'll lose our window to safely get her through surgery. She'll return to the room intubated & remain that way until gases improve and things are better under control. The vent will take away her work of breathing & hopefully give her more energy to fight this infection. The million dollar question now is, where is it all coming from? If it's a line infection Emerson has a chance at clearing it. If it's seeding from a deteriorating bowel there's no hope. I've had lengthy conversations with everyone here - transplant, PICU, surgery, etc. We are in a potentially difficult spot & are taking this one decision at a time. I've formally enacted a DNR for chest compressions & cardio electric shock...

Please keep them all in your prayers.

Josiah

Josiah went to Heaven this evening around 7:30pm. Please lift this family up in prayer as they mourn the unimaginably heavy loss of their child.


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Prayers Needed

Josiah only has a few days left on this earth.  Please keep him and his family in your prayers.  If you can leave them a kind word, I know they would appreciate it.

Please pray for good scans for Joshua C.

Joshua P. can use a lot of prayers as well.

Urgent Prayers Needed - Joshua

Joshua has relapsed with his 3rd bout of Rhabdomyosarcoma.  He's only 6½ years old.  Please lift him up in prayer along with his family.

Blessings,
Amy 

More prayers needed

Noah's mom, Kate, posted the following update on Facebook just a few minutes ago.  Please lift them up in prayer:

Well, rats. I really totally expected this echo to be a non-event so to speak . . . but it wasn't. Noah's heart function is decreasing and his heart is enlarged. This was checked and rechecked, and both the echo and the EKG showed the same results.

I hate this.

We'll be talking to our cardiologist again this afternoon as he wanted time to think and to talk to a couple of Noah's other doctors. We are VERY much backed up against a wall here as Noah can't have any oral heart medicines and the IV ones are dangerous for home use. Right off the bat, Dr. R feels like trying to treat Noah's heart with IV meds could actually cause harm instead of treating it. Noah just has SO MUCH going on and his balance is so fragile, and when you add in the dynamic of IV meds only, then things just seem to get impossible sometimes.

Brayden and family are moving to Washington on Monday.  They are requesting prayers for safe travels and the avoidance of hospitals along the way!

Joshua has been hit hard with a bug that's been running through the family and this is very dangerous for him. The family is asking for prayers that Joshua will get over this illness swiftly and without any sign of further decline as a result of having been sick.

Blessings,
Amy

Prayers Needed

Joshua is not doing well.  His parents are starting to have "end of life" conversations with the doctors.  They are desparately in need of prayer.

In addition, his sister, Bethany, is recovering from heart surgery and complications are causing her incisions to open up and causing all kinds of pain and problems for this sweet little girl.  She may have to be admitted to the hospital (which is quite a ways away) and their mom is being torn in two between her two sweet fragile children.  Please lift them all up in prayer.

Angela went home to be with the Lord.  Please pray for her family as they mourn this devastating loss.

Amelie was diagnosed roughly 10 days ago with Medulloblastoma.  She has had surgery and has more coming up.  They have a long road ahead of them so please keep them in your prayers.  I went to high school with her father.

Jonah and his family have welcomed a new baby boy!  Pray that all will work out and that this sweet baby will be theirs forever.

Josiah is losing weight and not able to tolerate full feeds.  Please keep them in your prayers.

Jacob had a scary episode while his family was out at the botanical garden and is now in PICU.  Pray for them.

As always, please feel free to leave prayer requests or updates in the comments section or send me an email.

Blessings,
Amy

Urgent Prayers Needed

Noah's grandma (Kate's mom) is in dire need of prayers after a stroke.   Noah is still not feeling well either, so please pray for him and pray for strength for Kate as she deals with all of these things.

Blessings,
Amy

Prayer Requests

Continue to pray for Angela.  She does not have much time left and their whole family can use some uplifting.

Joshua has been having some very trying times as of late and seems to be in a bit of a good spell.  Please pray that he can rest here for a while and enjoy some good time with his family.

His sister, Bethany, is recovering from open heart surgery and is having some complications.  Pray that these start to resolve and that she have quick healing.  Pray also for their mom, Kate, as she is surely being challenged with all she has on her plate.

Phoebe will be starting her next round of chemo next week.  She has been separated from her mom and brothers for 10+ days due to nasty virus going through the family.  Please pray for all of them as this has been extremely heavy on their hearts.

Christian had a great 4 year check up.  Please pray that he will continue to thrive and grow.  Please take a few moments to watch the moving ISR video on their site.  This training is invaluable.

Josiah was enrolled in the hospice program this week.  Please keep them all in your prayers.

Jamie is still recovering from her broken back.  She has a lot on the back burner while this heals, and the entire family could use a lot of prayers.

Blessings,

Amy

Pray for Noah

I'm going to cut and paste Noah's mom's Facebook update here for those who are not friends with her there.  Please keep them in your prayers.

Just finished speaking with Dr. B. Noah's urine grew out one of his usual culprits. It's fairly clear at this point that the gentomycin (antibiotic) bladder washes are no longer holding infections at bay. We're going to continue them for the meantime while Dr. B talks to urology and infectious disease, after which point we might just try vinegar bladder washes.

Noah is still looking fairly rough. He can have a very, very short burst of concentrated energy but within a few minutes all of the color literally drains from his face and he is totally worn out. As long as he is basically resting (using his ipad, playing quietly with Lego,s etc. he seems pretty good but even then he is very pale with dark, dark circles under his very sunken eyes.

We need to find a way out of this. We had such a great summer with no infections, and I'll always be thankful that the gentomycin worked at least that long. . . . I just expected it to last a lot longer

. While the 2 bugs he keeps growing are susceptible to the antibiotics he's taking (at least they are in a lab setting!), they are not being eradicated by them in Noah's body, so they rear their ugly heads again almost as soon as the antibiotics are stopped. Dr. B will be revisiting the idea of continuous antibiotics when he speaks to the infectious disease doctor next week. This would come at a great price to Noah - IF it worked, it would hold the bacteria at bay longer but it would also probably hasten the development of a totally resistant bug and therefore potentially hasten the end of Noah's life. It's an agonizing quality/quantity debate and it may not be something that we can even do anyway.

We will be repeating all of his labs right away on Monday and will plan to go to Greenville Tuesday for a transfusion if needed. If Noah is doing all right, I'll be going to Greenville Monday for a greatly-needed once a month "big shopping." I dislike the idea of going two days in a row but there is no way I would drag Noah around to stores the way he is feeling right now.