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Showing posts from August, 2023

Perspective - evening 8/31/23

This was part of my post from a week ago. God is Freaking Amazing and so is Justin! God Loves Justin! Morning 8/24 Steve and I both stayed at home last night. I had to stop by my office so came in to the hospital in time for PT/OT. Apparently Justin had a good night sleep or some vitamins or something. He was sitting on the edge of the bed and was able to lift his right leg on his own to put it in bed!!!! OMGosh! He was able to squeeze with his right hand more than he has this whole time, and had to squeeze both Steve and I after he was working with the therapist to show us. He was also kicking at a ball above his leg, with the right leg, and counting out loud with them, one, two kick

Moving forward 8/31/23

  Sorry for not updating earlier today its been busy.  Justin Continues to improve And as each team of doctors sign off on his health, they are starting to discuss sending him home soon!  It will take some time to put everything into place to make sure he is successful. But this is great news that has improved his spirits. This includes returning to school With a modified schedule of some sort, continuing towards graduation.  We are so grateful for each of you and  Your continued prayer and support!

Improving & Tired 8/30/23

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 Justin had a big day today with 2 sessions of Speech and 2 sessions of OT in addition to at least 30 minutes of PT. He was very tired and rightly so, but definitely adjusting and working hard.  I had forgotten we saw a nurse in the cafeteria last night that helped him in the ICU during the unhook unplug transport test come back rehook replug phase. He was taken aback that Justin had walked into the cafeteria to order food! As part of his therapy and "get outta here" plan, he is cooking breakfast for his OT tomorrow! We let you know how it goes. Jovi saw Justin for the first time tonight in his new room and was amazed at his ability to walk and talk. She is still bossing like a big sis and he's the cookie stealing little bro.  

Afternoon 8/30/23

  Sorry for the delay in posting, it's been a busy work day.  Justin is much the same as yesterday, doing OT and speech this morning after which he had a good nap. We met with the doctor team to start discussing Rehab options.  This afternoon he has speech and PT and OT again.  He is slowly wrapping his head around visits!  I know all his friends are anxious to see him!

You got this 8/29/23

 Dude. Brah. Lowkey 👩 needs sleep... Justin is crushing it! Amazing visit with pysch team. Contemplating Rehab. Almost done with watching "Community", again. Any recommendations? Walked from his room.  To PT. 10 minutes on the treadmill. Down the stairs.  Outside to garden.  Cafeteria, ummm hungry! Upstairs. Back to cafeteria to see friends.  Shower shave sleep repeat.   Thank you to our community who never stops supporting us.  We could NOT do it without you all! Thank you for loving #justwin #justindavidstrong

New Pace 8/29/23

 Justin had a pretty good night and is adjusting to a little more independence and definitely more "peace & quiet" in this unit rather than ICU. He has had OT and Speech, and will have PT and a 2nd OT session this afternoon. He does get a headache from the activity and bright lights, but they are putting into his plan to give pre-workout tylenol. We have talked to hemotology and Neuro and things can stay the course. We are now meeting a few new treatment/dr departments and will start meeting with Rehab to make a longer term recovery plan. Not too much new today. Thank you for praying! We are "here for the long haul", but Justin is on board. And he orders 2 desserts with every meal and ate 2 breakfasts👍 🥞

Adjusting 8/28/23

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window view of the wall... Today has been fairly quiet as the doctors and nurses do not come around as much in this room. I have meet a couple of the doctors that will be overseeing his care now. He had a good PT session and said it felt good to "exercise". He is still quite hungry and enjoying dessert more frequently than at home. 🍪🎂 🍪🍪 His favorite question is "when am I out of here?" To that we don't know the answer but we know he will work hard to make it happen.  I (Kim) am staying here tonight to keep him company.  Asking for prayer for no setbacks tonight. 

Big Step! 8/28/23

 Well, good news! Justin managed to get himself sprung from the ICU!!! He is in a room in the Neuro unit with a window with a lovely view of the wall next door. 👍 But it is progress! He is very disappointed not to be going home, but this step in the right direction will help tremendously! He has seen OT & Speech therapy this morning and is now taking a break playing a video game while waiting for lunch, then PT.  He is not quite ready for visitors. We will keep you posted.

Evening 8/27/23

 Justin has had a good day today, a little more quiet than weekdays. He has rested a lot and eaten a lot! He is on an oral anti-coagulant now. He is also talking more and using his right hand for things. He is off of the high sodium drip, NG tube is out so he's also taking oral sodium and trying to maintain levels on his own with food and Gatorade, so pray as we need it not to drop any more so he can move out of the ICU tomorrow.

Psalm 105

Hallelujah! Thank God! Pray to him by name! Tell everyone you meet what he has done! Sing him songs, belt out hymns, translate his wonders into music! Honor his holy name with Hallelujahs, you who seek God. Live a happy life! Keep your eyes open for God, watch for his works; be alert for signs of his presence. Remember the world of wonders he has made, his miracles, and the verdicts he’s rendered— O seed of Abraham, his servant, O child of Jacob, his chosen. Psalms 105:1‭-‬6 MSG Prayer: God you have never abandoned or betrayed me. You have faithfully cared for me and defended me. There is no one like You.  When I look at nature, I see Your creativity. And when I look at my life, I see Your love. And that is why today, I want to tell the whole world ehat You have done and who You are. So today, give me the courage to declare how great you are!

Hopeful 8/26/23

 Justin had a good afternoon today. During PT he walked with a walker to the window and back with the help of the therapist. He spent a good part of the afternoon reading his cards, out loud actually!! He also found the blog and started reading some of the posts and comments. I have asked him not to read everything all at once as it's super emotional.  He remembered and asked about school and the U of U program he enrolled in. It was actually a word he was trying to tell me yesterday. HSUP, High School University Program.  He knows he should be able to leave ICU on Monday, but at one point was disappointed that it's not to home. But he's strong and fighting. Some of the nurses that he has had stopped in today and are amazed at his progress! One of the things he said to us is he's "hopeful"! Please keep praying!
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 Saturday 8/26 afternoon post. It is Saturday and after 1p in the afternoon. It's almost exactly one week from when he got out of surgery and was recovering from the anesthesia. It has been a wild and bumpy ride but so many of those bumps have been smoothed out by your prayers.  A nurse named Robin was one of the first to be caring for Justin, and as I was chatting with her last night she shared a couple of thoughts.  First, as much as she loves to see patients progress out of the ICU she said it's been good to have Justin back and see his progress. Second, she shared that he is having a "miraculous" (her words not mine) recovery. The difference in the last couple of days has been awe-inspiring. Last night he got to eat his first real food in a week, he went straight for pepperoni and sausage pizza, he was able to repeat the words pepperoni and sausage for the nurse as she asked if that's what he wanted. He didn't eat a lot but he was eating. And then this mor...

"Do you remember when . . . ." share a memory

 This is not an update post, but rather a request for your comment post. In the comment section we would love it if you would share a story of one of your experiences with Justin.  Please don't forget to include your name and start it with,  "Do you remember when . . ." or "You may not remember this, but . . ." I know these your story will be uplifting to Justin

Another Step 8/25/23

 In spite of being tired, Justin was able to move to the wheelchair and ESCAPE his room for a minute. The OT/PT talked a lot with him about being patient, working hard, and how things will look and feel different when he's out of ICU.  The Doc this afternoon said they are able to slowly reduce the quantity of some of the meds to see how he reacts.   He met with the speech therapist and spoke some more words, and has authorized him for drinking and eating some food! Yeah for lemon lime Gatorade, some bites of pizza and ice cream! Keep praying for these steps moving forward and his spirit!

Morning 8/25/23

 Justin had a pretty good night. He's still sleeping which is good, because daily fun with doctors will begin soon. His sodium is up another #. NG tube is back in. CT showed no changes aka bleeds which is good! Not much more for now. Please keep praying!

Evening 8/24/23

Justin has had a busy day and is exhausted. He has reached therapeutic levels of heparin in the blood so they did the CT scan tonight. They didn't have the results yet so I'll find out in the morning. I'm staying here tonight. It will possibly show status of infection, but mostly looking for any bleeding.  The nurse who was here the first two days is back, so he's changed a lot since then! He has figured out he will be here a while and that is pretty frustrating! But he should be able to see more people once they can move him out of ICU, and I think he'll be pretty motivated for rehab. ⚽  I think they said sodium went up a #, and they are giving him as much as they can, but he also coughed up the ng tube again. I am hoping they will start on oral medication again, which may also mean food. The social worker thought he might be hangry. 😉She was helpful giving some ideas on helping his mood so he has had his phone some! He is enjoying messages and videos, and his tea...

Morning 8/24/23

Steve and I both stayed at home last night. I had to stop by my office so came in to the hospital in time for PT/OT. Apparently Justin had a good night sleep or some vitamins or something. He was sitting on the edge of the bed and was able to lift his right leg on his own to put it in bed!!!! OMGosh! He was able to squeeze with his right hand more than he has this whole time, and had to squeeze both Steve and I after he was working with the therapist to show us. He was also kicking at a ball above his leg, with the right leg, and counting out loud with them, one, two kick I haven't talked to the nurse much, and wanted to let Justin sleep, so we'll update more this evening. Keep praying, things seem to be going in the right direction. Also I think they are saying it was not meningitis, but it is the Sinogenic Subdural Empyema (brain infection). Below is the other thing he was diagnosed with. The heparin is fighting clots in the whole body, and the antibiotic he's on will fig...

Love and Prayers 8/23/23

 I just wanted to take a moment to say thank you for the outpouring of love and prayers from so many people that we can't keep track of them all. It has meant so much to Kim and me and to Justin -- whether he realizes it or not. On the way home I got to see a beautiful rainbow (I've tried to include it inside this post but it wouldn't let me) and it just reminded me of the promises of God and that He will never leave us and that he will never forsake us. When I walked into the ICU room where Justin is staying I got a smile from him that melted my heart. Kim and I were separately praying for the same thing yesterday -- that there would be some "win" today, no matter how big or small. For me, that prayer was answered when I got to see that smile.  Again -- Thank You!  May Love & Peace that Surpasses Understanding Invade Your Home and Relationships. Steve

Update 8/23/23

  Things are still progressing slowly in the right direction. Justin had a pretty good PT session this afternoon, Coughed some good gunk out of his lungs, tolerating the ng tube, receiving meds via picc line. Fever is down. Thank you for praying! They actually were able to culture the bacteria and give a diagnosis.  More on that later.  It doesn't change the current course of treatment in any area of all the different things he is dealing with.  Some friends from school left some things for him and he actually laughed out loud when we showed him!!! Videos will be next for him. Baby step #2 keep praying 

Baby step mid-day 8/23/23

   This update may not be So detailed yet, Sorry to be late sending. He has picc line and new ng tube. Levels of anti coagulation are improving.   He is getting out of bed for bathroom, and had positive session with speech therapist. He should be able to get good sodium now.    He should have PT/OT this afternoon, then hopefuly can sleep.   Just a good little baby step. Keep praying!

Evening 8/22/23

 Tonight I (kim) went through rounds with the doctors.  He is on the blood thinners, actually call them anticoagulants please. 😉 That should help for any potential blood clots.    I'm typing this on my phone which is a pain  So I'm going to put a number next to the things to pray for because I can't underline.😶 What they saw in the neck with the ultrasound they did not see on a CT.  They did see some fluid in the lungs, which can be normal for someone that's not moving much. Hopefully PT/OT will help tomorrow if they can 1 get him up. 👍 they're also installing the 2 pic line under sedation (not anesthesia) in the morning to be able to administer meds and draw blood more easily.   Fever and Blood Pressure still seem under control. 3 Sodium is still low  But with the pic line they can give him the stronger dose again.  4 Please pray for Justin's mind and spirit. I was able to understand he was asking me what happened, and it makes ...

Carrying on 8/22/23

Sorry for being slow to update today.  Justin is looking better. Fever and blood pressure are down. Sodium is slow to respond but has come up since yesterday. He has the eeg feeds off and got his hair washed and a "bath" yesterday! He is also getting "food" through the ng tube. There is no improvement to speech or right side movement, but he still can understand everything and recognizes things. Anyone that wants to send Steve or I a picture or video, we can show him.  They have found a blood clot in his brain, which is not too abnormal in his situation. It is not blocking the vein (or artery, I don't know), so they are planning to start him on blood thinners. He is getting a CT scan right now to get a closer look at something they saw on an ultrasound today. More on that later. He will stay in ICU tonight.  Thank you for all your messages and prayers. Please keep praying! 

8/21/23 Post evening Post

Just a brief update tonight. We are exhausted. Our Doctor/Nurse team was able to place the tube in Justin's not-surgery nostril with the tube to his stomach, under sedation and with probably scope guidance. This will allow them to administer the much needed sodium! They will also potentially start to feed him at some point.  His night nurse is on top of monitoring his vitals, flushed his nose for healing from surgery, and regularly bothering him checking him neurologically and managing his pain. His fever is down finally.  Praying for a good update in the morning!!!!  P.S. thank you for all the texts, messages, posts, etc. please forgive not answering all, any typos, i'm kinda fanatic about that usually, and anything that doesn't make sense. Steve, Jovi and I are so FREAKING grateful for all of you! 

8/21 - Evening Post. Riding the roller-coaster

This is Steve putting in my two cents. A day of lows and not-so-lows -- keeping it real here.  Finding out that Justin had a seizure I had to go back to the ICU let's definitely not the way I was hoping to start my day. I called the high school to tell them that Justin was not going to be able to attend for an indeterminate amount of time.  Props to AMES and their principal for the supportive attitude that they are taking.  The not-as-lows -- we talked to the neurosurgeon and it was more good news/bad news. Justin had another MRI done late this morning it took some time to get the results back.  On the brighter side there's been no type of stroke in the brain, although some news that we did not want to hear is that the infection made it deeper than the dura mater ("tough-mother" in Latin) layer and into the brain itself. Again neurosurgeon has been doing a great job and communicating things in a way that is accurate without being too alarming.  Th...

Back to ICU 8/21/23 morning

Bit of a setback last night. During the night he had a fever, high blood pressure, low sodium, and had a seizure around midnight, but none since.  He's back in PICU, being monitored closely, and now headed down for MRI to see what if anything has changed.  Thanks for praying! 

Room Change 8/20/23

Right before what would be dinner time, we moved from the PICU to a unit in the Neurosurgery wing. They tell me it's a good thing. 👍 He is healing from the infection and now they are focusing on healing the brain. He's being monitored by the correct people and in a quieter room.  Thank you again to everyone supporting us and offering to help! We appreciate you! 💖

Recovery begins 8/20/23

This entry will combine 19th and 20th post-op. Also, thank you ALL for the messages and prayers. We will use this to communicate rather than answer all individual texts.  Please leave your name when you write a comment. It looks like it's recording as Anonymous. We will go in and read comments, and at some point share this with Justin.  What we have now learned is that normal bacteria which lives in every human being's sinuses, was not normal because of the head cold, and the infection went into the brain cavity rather than out nose, ears, eyes or skin, because it has to go somewhere. It was difficult to diagnosis as he really had none of the "normal" symptoms of meningitis. He has slept a lot which hopefully is helping recovery. He is moving slowly but in the right direction into post-op. Things looked good with CT on 19th, brain is back to symmetrical. He has catheter out, and can drink fluids, eat a little, and take some meds orally. Surgeon said blood work is movi...

Hospital post-midnight 8/19/23

August 19th continued While we waited for the MRI that would show the surgical team what they were facing, and how to guide themselves, we met with the surgeons and prepared ourselves, as they prepared for the surgeries. I have to say, I am so impressed with the medical staff at Primary's, and the surgical team filled me with confidence. Even as I had a knot in the pit of my stomach thinking of what Justin would be going through, there was no option to but to do surgery. Please brace yourself for this part. He would have died without it.  The surgeon showed us the MRI before they went to surgery. It was cool, I liked how the eyeballs popped out, like a skeleton in a movie. :) The infection was pushing the left side of his brain to the right, and causing everything in the brain that is supposed to be perfectly symmetrical to be squashed and misaligned. No wonder he had a headache! We went home to rest, I can't say I slept, while they did the surgery, then back to the hospital w...

The Beginning of the Story 8/12/23 recorded on 8/19/23

As John Eldrege shares in his book  Epic: The Story God Is Telling (https://www.amazon.com/Epic-Joh-Eldredge/dp/0785288791/ref=sr_1_1?crid=2FBIFGDPPC3B3&keywords=epic+john+eldredge+book&qid=1692558665&sprefix=epic+john%2Caps%2C151&sr=8-1 - a great read for $2.99) we are living our story as part of a bigger story.   This is the story of Justin's bout/battle with meningitis aka Sinogenic Subdural Empyema aka sinus bacteria going into the brain fluid/menges and causing infection, pus & swelling. This is a part of the bigger s tor y in his life, which is part of the unique role Justin has in the amazing story God is telling. Sorry that this will sound like a script we have been telling the doctors for 48 hours; because it is. Grab a cuppa and read. We know for sure on August 12th that Justin had a cold. It could have started a day or two earlier, but he felt well enough to play soccer that night. I wasn't there but apparently he played out of his mind! On ...