Author: hannah

May 13 This is the day the Lord has made…. let us rejoice and be glad in it!

Seth has been at the LTAC unit for almost a week now. He progressed to stage 8 on his ventilator weaning this morning (out of 12). So this is great news! The Dr rounded recently and said that it’s good seeing Seth use both his chest and diaphragm muscles! Stage 8 means that he’s off the ventilator for 8 hrs, then on pressure support (where Seth is still doing most of the work) for 8 hrs, and then full support for 8 hrs.

The RT just came in and said he’s practically passed stage 8! Will move to stage 9 tomorrow. PT didn’t get him up out of bed to a chair today because his BP was a little high. The nurse had to give him some extra IV BP this afternoon to help bring it down (on top of oral meds).

Speech came, gave him his first ice chips and said he did good with swallowing them! He is cleared for 1/2 cup of ice chips every 4 hrs while he is off the ventilator. Hannah said she also got to give him ice chips. The left side of his mouth was doing better than the right side, but it just needs practice! The family got the ok that we are allowed to brush his teeth too!

When the dr rounded this afternoon, they also decided to increase his muscle relaxant medication per PTs recommendation to help with his tight muscles. They are also going to make his pain medicine as needed instead of scheduled. Temp this afternoon is 99.3, down from 100 this morning. His bowels are working good, and hopefully improve even more after getting him off narcotics (that can slow things down).

We are so proud of all the hard work Seth is doing! We know that God has big plans for him and it is evident in all the little miracles and praise reports we see in him every day.

Please pray for:

-Praise that cousin Ellis has had no recent seizures!

-Seth’s continued weaning off the ventilator

-Less “neuro storming”

-Praise that Seth did well with his first ice chips today!

-Lower BP so they are able to get Seth out of bed

– Less tight muscles

– A little more responsive each and every day.

Amen

Kerry

Dr said Seth is progressing well on stage 4 and trying for stage 5 (!) of weaning off the ventilator. Pray for relief of the raging neuro storms. Pray that the storms are being used to rewire and strengthen pathways in his brain.

Cell by cell.

Neuron by neuron.

I spent the night with Seth so got to spend the very first moments of Mother’s day with him. My mom is always on time sending special occasion cards out, so I was able to open her Mother’s Day card to me last night. She wrote, “Know that God chose you and Dave to be the parents of Hannah, Benjamin and Seth.” To this I say, I am so blessed to have been chosen.

Attached is one of my favorite pictures of Hannah, Ben, and Seth when they were little. They surprised me with some awkward family photos last year. 🙂

To those whose hearts are broken especially today, please know I’m sending extra love to you.

From Sufficient Grace Ministries:

Whether you are a mother-in-longing,a mother missing her own mom,one whose mother/daughter relationship is broken,a mother with an empty nest, one whose nest is full, or a mother with children in heaven. Whether you are praying over a hospital bed or rejoicing over a miracle…We wish you a gentle Mother’s Day!

-Darcy

Today, Seth is moving to stage two on the ventilator. There are 12 stages of weaning the ventilator off, but can be anywhere from a 6-12 day process depending on how he tolerates it. I know stage 2 doesn’t sound exciting, but to us it’s a huge milestone!

Hannah put pictures back up in Seth’s new LTAC room.

I stopped by work yesterday, and talked with a someone whose son had a disability so he understood the hospital scene and family dynamics of taking care of a loved one. We talked about how surreal it was that when we walk out the hospital doors, it is life as usual for everyone else. We’ve been granted a new perspective on things, some heartbreaking and some comforting. God, on the other hand, has perspective on everyone and everything-past, present and future. That’s probably why the Bible is filled with verses of how much He loves us and takes care of us in our day-to-day normal lives or when we are in crisis mode or when we are celebrating in heaven.

Your homework today is to tell at least 5 people how much they mean to you.

Specific prayers today:

Success on weaning off the ventilator

Little and big miracles to start following commands

An update on some others we’ve been praying for:

Thankful for: Ellis’ lumbar puncture showed no signs of infection!

Trey to be leaving for a more extensive rehab center!

Silverio went home!

Yesterday I had asked for prayers for poop (gross, I know). An x-ray of his belly was done to make sure nothing was blocked (its been 4 days since his last BM). Prelim results said there was no blockage but looked like a lot of gas. They stopped his tube feed for the night in hopes that helps get things moving.

Early this morning, Seth pooped twice (yay!) but he also threw up twice (not-yay!)

8:00am Dr noted from X-ray there may be an ileus, a lack of movement somewhere in the intestines that leads to a buildup and potential blockage of food material. (Fun fact: our intestines are about 28 ft long!) They will be suctioning his stomach to relieve any pressure of the build up of gas or liquids.

MRI still hasn’t happened to see if Nocardia is causing brain abscesses. It’s been almost 24 hours since it was ordered (ugh!)

If you would like one of the awesome bracelets that say “Prayers for Seth” contributed by friends Jeff and Sarah, please message one of us and we will send you one or more (for free of course). Picture is of friends showing off their bracelets. Upload yours to our photo collection!

Specific prayers:

Fever and physical relief, good MRI results.

Healing and comfort prayers for Ellis, Trey, Silverio, Danita, Ranjini, Janelle, Frank, Joyce, Sam, Caleb, Vincente, Jesse Jr, Derek, Lindsey, Betty, Steve, Anna, Michael, the families of Todd & Lex.

These are many of the families we’ve met at the hospital, each with a different story, different care, different prognosis. The thing that is NOT different between us all is our God that created and holds the earth and universe together, is the same God that knows us before we were born and continues to love and hold us in His hands. We trust in His promises!

-Darcy

No big events the past 24 hours. Occasional fever keeps being an issue. The antibiotic, Bactrim, is not responding to the mystery lung bacteria confirmed as Nocardia, so the pharmacy will come up with something else. He’s been given a bit of insulin a couple times when his blood sugar gets too high.

Dr looked at the wall of pictures and commented he is glad we are all here for him.Tomorrow is still the plan to go to the step down unit in Tower 2. Seth has made such great progress while he’s been here and we are ready to help him move on to the next step!

On the morning of the accident, 4/3, one of our church members also ended up in a different hospital due to previous falls and brain injury. Over the following days, his wife and I were texting because our “men” were in the ICU, or intubated or awaiting CT scans at the same time. Even though our situations were different, there was comfort and encouragement between us since we both knew how we were feeling. Denny passed away on 4/21 and his funeral was yesterday. The sermon was about Denny being amongst all the others that went before him rejoicing around the throne of God. The final hymn was “Go, My Children, with My Blessing” -which is such a God thing because I was going to make a post about this specific hymn.

I’m one of those moms that saved A LOT of art work from my kids’ elementary school days. I can’t remember how long this one has been hanging on my pantry door but it has been there a long time! It must have been a memory work assignment of Seths (you’ll notice his initials in the corner).

It’s a comfort to me that Denny and Seth and all of us are given this same promise: Go, my children, with my blessing, Never alone.Waking, sleeping, I am with you; You are my own. In my love’s baptismal river. I have made you mine forever. Go, my children, with my blessing – You are my own.

-Darcy

PS, For those that remember my post about sweatshirts needed for the 9th floor patients, Denny’s wife gave us his sweatshirts to be of good use to others. ❤️

Seth had a good night. X-ray looks good so he will get remaining chest tube out. BP & HR pretty good. At the moment his fever is down but still an issue.

I woke up from a dream that the mystery lung bacteria (besides the Valley Fever and Staph) was finally figured out and was called Harvest. About 10 minutes later as I was telling the nurse about my dream, Dr came in to check on him. The mystery bacteria is confirmed to be Nocardia, a type of bacteria that is found typically in standing water, decaying plants, and soil. Now they just need to figure out the sensitivity of it to determine what antibiotic will help.

It’s another healing day! Cell by cell. Neuron by neuron.

I’ll leave you with this beautiful song to reflect on today. I appreciate the music that has been forwarded to me. I have a hospital play list with them all for Seth.

Jesus Is

-Darcy

Today is another healing day. Cell by cell. Neuron by neuron.

I’d like to make this update a public service announcement for those with children over 18. Please be proactive and have them sign a Healthcare Power of Attorney, Living Will, and Mental Power of Attorney.

Seth signed these forms in January and without them, we, as his parents, and him being over 18, might not have been given power to make medical decisions on his behalf or be able to access his medical records. On the morning of the accident, I grabbed the forms on the way out the door to the hospital. As I was putting them in a bag, I prayed out loud asking that his condition wouldn’t be serious enough to use them, but also thanked the Lord that we had them ready. I never thought we’d use them but I’m relieved we were prepared.

Each state may have their own forms, but Arizona’s forms can be found on the AZ Secretary of State’s website (You can choose to register them or just keep them for your own records).

A Financial Power of Attorney would be a good one to add as well. 🙂

Being spiritually prepared is what the passage Luke 12:40 talks about. “You also must be ready, because the Son of Man will come at an hour when you do not expect him.”

A Clay Jar publication author, Ed Jarrett writes, What if, instead of warning you, Jesus just knocked on your front door and invited you to move to the place he had prepared for you (John 14:2–3)? Would you jump at the opportunity, going without hesitation? Or make excuses why today would not be a good time?

The truth is, we do not usually get any warning. Instead, we are told to always be ready. That does not mean I should sell everything and sit on a mountain waiting for him. It does mean that I should live each moment as if, in the next moment, I might be standing before him.

Always be ready, looking forward to that day when he takes us to be with him forever.

Amen to that!

-Darcy