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.