Help the Arnold's, Matt in critical condition at Neuro ICU

Matt Update 8/11

Matt will be discharged from rehab on Thursday, August 15th. This was not based on insurance. This will be an interesting transition and I’m honestly not fully ready for it. But as you know, I’ll hunker down and get it done and figure it out as we go along. I will be the 24/7 nurse until I can get a nurse hired to help.

The system frustrates me a little because he needs continued outpatient therapy and there is only one location with availability and that isn’t even until mid-September. I have requested for in-home therapy and waiting on a response. Hopefully this would start shortly after bringing him home for a few weeks. There are several things I’m working on with the military’s help and I’m very grateful for everything they are doing.

This may be the time that more help is needed as I navigate caring for Matt and Thea. I would appreciate continued prayers. Love to you all. ❤️

Update 8/4 - from Claire

I know I have not updated in a few days. I have received confirmation that insurance has approved the referral to rehab and I am just waiting on the rehab facility and/or hospital to notify me of Matt’s discharge and move date. He will be going next door to the rehab facility and staying there for at least 2 weeks and go through roughly 3 hours of therapy a day.

Matt has a follow up appointment on August 19th to get another CT scan and see how his brain is healing. He has been on anticoagulation medicine and will continue on this for 3 months or until the doctors/surgeons feel he is ready for the cranioplasty surgery.

Matt is getting up and walking every day and in good spirits. We are continually working with him to regain memory and verbal comprehension. His words are jumbled but he works hard to correct them and make sense of what he or others are saying.

We used to play Yahtzee a lot (before all of this) so I’ve been playing one round with him each day. He knows the rules, can add the dice up for his scores, and is working on saying the words he sees on the paper. Example, if he is seeing and saying the word “five” it will be a different word that starts with the letter F. After a few tries and help he will say it correctly. This is what conversation or reading is like right now.

I have spent time explaining in visual detail what his brain has been through. He understands that it could take a short or long time for him to properly heal. Thank you for your patience in waiting on updates. I will share again soon when he is in rehab. Love to you all! ❤️

We are entering part 2 of this journey and I’m not sure how many parts we have left.

Thank you for the continued donations, kind words, prayers, and support.

Matt’s Progress - 7/29

As I’ve mentioned, I’ve been working with insurance and we should be close to getting the rehab referral process moving again and successfully. I do not have a discharge date yet.

They do have sutures in his head and those are estimated to be out by August 8th. We are still looking at maybe two months before he can get his skull put back in. Unless his brain heals faster!

Matt has been doing A LOT better! The fluid in his brain along with the pain level have gone down tremendously. He has been walking the halls, chatting with people, and working on doing simple every day tasks, like brushing his teeth and putting clothes on.

Matt has Auditory Comprehension Deficits and Verbal Expression Deficits. This will be the biggest piece to work on in rehab and going forward. If you’ve seen the movie 50 First Dates, it’s a little like that with his memory. Very short term. He does have pieces of memory that come out when talking but he isn’t aware of them.

This has been challenging at times but everyday I or therapy work with him on speech and writing. He is a visual learner so we have been putting our heads together on what would trigger things for him. It’s been an interesting process and some days are harder (for both of us) than others.

I will update you on the next phase soon and what is to be expected for the coming months.

Love to you all!

7/20 Update from Claire

Update from the last few days

To paint a picture, the ICU was monitoring him either every hour or two hours. This step down unit is every 4 hours. While Matt has definitely become more alert he is still considered a neuro patient and this causes a major safety risk.

They started by placing a camera in his room and now have a staff member sitting with him everyday. Matt got the staples removed out of his head but since then, the surgeon has had to restitch part of the wound. They are not sure how much of this is due to the fluid stretching the skin and him messing with it.

What has improved: His verbal communication and physical abilities! He is still unable to form full comprehensive sentences. It’s like deciphering code some days. He is eating on his own and getting more solids. He has been walking the halls with PT. He doesn’t understand or respond to all commands or questions. Small progressions.

There are a few checklist items to clear Matt for rehab and the surgeon has told me to mentally prepare for longer than I think. I was thinking the first week of August…

He has to be cleared by therapy (Speech, OT, and PT). He needs to be free of any infection and has been dealing with a small one. The fluid needs to be maintained. They have had Matt on an antibiotic and hope to start him on medication this coming week that would reduce the amount of fluid build up. There will be another CT scan on Monday.

I know all of this sounds amazing, but it is also scary because his skull has not been put back in yet and won’t for a while. So he could and will become more mobile but is still lacking the understanding of why he needs protection.

In the meantime, I’ve spoken with Rehab and they would keep him for 14 days unless they felt it necessary to keep him longer and insurance allowed it. He would then come home but require 24/7 care. This is all stuff I am beginning to plan on the back end and will share more about when the time comes.

The main prayers are

• His safety and awareness

• His memory to return 100%.

• His verbal communication to exceed expectations.

• The patience and growth as we wait for his release to rehab

• The next phase after rehab. Home care and adjustment.

I should add, getting the skull put back in would be the BEST solution for the fluid build up. It’s called Cranioplasty. Matt’s brain just isn’t ready or hasn’t gone down enough yet. This could be 3 more months and he can be in rehab or at home before getting it put back in.

update 7/13 from Claire:

Need prayers

Matt has been in a lot of pain this morning. I asked the doctor to put a request in with the surgeon to come back and drain some more fluid as soon as possible.

They also noted that his White Blood Cell count is elevated and could be due to infection. He doesn’t have a fever which is good but if he were to get one they would need to act a little faster and possibly go back in to see what needs to be done. Right now this is being monitored.

They started him on the blood thinner pill today which is great but also means if surgery is required again, it would have to be 24-48 hours from the time they stopped the pill intake. Just pray for NO INFECTION and that they can drain the fluid today and relieve his pain. It’s hard to sit by and watch and wait.

Update 7/11-7/12 from Claire:

I spoke with the doctors yesterday for the first time since Matt has been in this unit. They asked a bunch of questions as they are still trying to determine the cause. As we spoke, I mentioned my concerns (again) for the fluid build up. I have been told the last few days that it is a risk to drain because it could return, cause infection, etc…

I was explaining how much pain Matt has been in and that I’m pretty sure the fluid has increased since the last scan a few days ago. Reminder, I have requested the last three scans to be ordered. Thankfully Matt let out a groan and “ouch” while they were in the room. It’s like it was brand new information to them that he was in that much pain. The attending doctor told me he appreciated me advocating for Matt as I know him best and would be glad to put a CT scan order in. A few hours later they completed the scan and sure enough MORE fluid. They told me the Neurosurgeon would be in to speak with me.

The surgeon came in and said this is common after removing the skull. Since Matt isn’t at a safe place to have that put back in, she would drain the fluid out with a needle, bedside! She would also give him medicine to decrease the amount of fluid build up and test the fluid for any infection. She got a good bit out before Matt got annoyed and wouldn’t let her get more. He immediately looked better. I was thankful for her taking the time but also wondering why I got so much kickback on what took her 10 mins to do.

Aside from this, OT and PT came by to work with him. PT came in and had him stand and hold onto a walker. They had me stand a few steps back in front of him and he stood up and walked to me . Then he let them know he was done haha. OT worked on getting him to stand, face the mirror, and try to brush his teeth. That wasn’t super successful but he did use a towel to wipe his mouth.

This morning, they took him for another scan and the results showed improvement. I got a little more brief but positive response and interaction from him when I arrived. To clarify, when I say we interact or communicate…it’s not complete sentences or comprehension. It’s a few words from him and not all of it makes sense.

Still waiting on a timeline for rehab.

7/8 update from Claire:

I walked in this morning to see Matt sitting in the recliner!!! Of course with the help of physical therapy but he was able to shift his weight to get in and moved himself around in the chair a few times. As well, the doctor is putting in the order for him to move to intermediate care which could be tomorrow sometime.

The occupational therapist spent some time with Matt and agitated him a good bit, but in the best way.

She went ahead with the swallow test and he did awesome! She started him on a liquid/puréed lunch. He can’t move to rehab until the feeding tube can confidently be removed from his nose, meaning he is taking in enough food without it. So this is the beginning stage.

Matt and I got to spend some sweet time together. I helped feed him, talked with him and got him to respond a little. Music was playing and it was amazing to watch him close his eyes, sway or bob his head and attempt to sing a little. I wanted more of it but again, my days are split between him and Thea.

As for the swelling, there is fluid above the brain that is causing pain and sitting in the space that his skull bone would normally be in. They have to monitor this fluid build up and while putting the bone flap (skull) back in would move it, his brain still needs room in that open space until the swelling goes down more. The other possible option is to drain it but of course it could come back. They don’t want to do this just yet because it’s more risk of infection. A tell tale sign of the fluid continuing to build, is a stretch of the skin around his staples. This is again frustrating because my immediate thought is, DRAIN IT! But I’m up against the “risks”. For now they will “monitor” but if you’ve been following along, or know behind the scenes…I will most likely not let this go too long .

I get my stitches out tomorrow and go into a boot for 12 weeks or so. I hope to be walking in the boot in 6 weeks or less. Please pray that I recover quickly so I can be more mobile as I continue to navigate everything. It feels like we are entering the next phase of decisions and care and I’m optimistic but it also brings on a new set of timing, requirements, logistics, and needs. With the most important being, Matt continues to progress and not regress. Pray that God would remove the fluid SOMEHOW, because he can!

Love to you all!

July 6 update from Claire:

Matt has been stable.

I asked them to do a scan last night and everything looked good - no change. They said he is sleeping so much during the day because he is awake through the night. The doctor plans to give him something to help him sleep at night, in hopes to reverse the cycle.

They will take the drain out of his head today. This drain has been in since his second surgery, removing any unwanted blood and fluid.

It is very possible that he could be moved to a temporary/interim room tomorrow before being transitioned to general ICU. They would continue to monitor and take scans. But the hope/goal is that by the end of next week, he could go to the rehab facility!!!!

One of the deciding factors is that he has to pass the swallow test, in order to take a blood thinner pill and be taken off the IV. If he can’t pass this, he would need to stay a little longer and look at getting a feeding tube in his stomach for a while.

Please pray that he passes the test and that no other issues occur between now and next week!

Valley of Blessing! Love to you all

July 5 a brief update from Claire. Please join us in praying

Matt has been sleeping most of the day and when awake, he is in a good bit of pain. I’m waiting on the doctor to tell me when his next scan will be.

Praying the Lord would guide the doctors and nurses to ensure Matt’s not going backwards. Hard to sit and wait.

July 4 - update form Claire

Matt is pretty tired today but stable.

Yesterday was bigger day for him. The OT came in and got him to count to 5 on his hand. He said the word “one” and mumbled a good bit. It was amazing to see him working so hard but you could also see the frustration on his face. She fed him a spoonful of thick apple juice and he went to reach for the cup himself. She pulled it away, he tried again, and then gave her the look of “you better hand me that cup” lol.

This morning they attempted a swallow test with him, by using a camera to see his throat when giving him some thick liquid. Unfortunately it wasn’t going down the right way so he isn’t ready for solids/liquids on his own yet. They will test again in 2-5 days based on his continued therapy.

PT came by and he was still pretty sleepy. They got him to sit up and try to stand. He wasn’t fully awake/alert to do this on his own. However, she noted he was being intentional with some of his movements which was a good sign. They didn’t want to force it and will possibly return tomorrow.

As for the doctor’s update: Matt won’t have another CT scan until this weekend, unless he shows signs of decline. There is a CHANCE he could move to General ICU next week but we won’t know until Sunday. Depending on his therapy and eating test, he could be on a feeding tube for a long while, even when moving to rehab. They would eventually determine when he could be put on a blood thinner pill instead of the IV drip.

He will get acute therapy, meaning he will live at the rehab facility until the team says it is safe enough for him to come home with a new plan of rehab. As everyone has been saying, it will be a LONG road to recovery.

I am hopeful and thankful for his progress, but it’s been hard for me to see him go through this, of course. Last night I was getting settled in my Airbnb and went to pick up the phone to call him. It’s a harsh reality and I miss him more than words can express. I appreciate everyone checking in and asking how he and I are doing.

Not out of the woods yet, but praying!!

Happy Independence Day and love to you all!

July 3

The last 36 hours have been a slow waiting period. Post surgery report, everyone, especially Claire, were just hit with so much exhaustion and Matt was asleep for most of that time as well. Eventually the doctors removed his breathing tube and lowered his sedation levels. This morning we had some positive news. Below is a direct update from Claire:

I got to the hospital around lunch today. I was told that Matt had a very active morning. He was trying to talk some and he put his sock back on his foot with his left hand!! The doctor put him back on the blood thinner so they were taking him for a scan when I arrived. This was to check for any bleeding coming back. Thankfully all looked well and stable. The swelling has gone down a little and his brain has shifted back to the left some which is great! They will do another scan tonight and are closely monitoring for any bleeding. I expressed my concerns about him being back on the blood thinner and wanting his brain to have a breather. The doctor said if any bleeding does start again, they will most likely stop it for a time. When Matt returned from the scan, he was alert and watching me talk to the doctor. Afterward, I got about 10-15 minutes of interaction with him. He was able to ask me what happened and I told him he had a stroke and how long he has been here. He was very emotional and I can only imagine what his brain is trying to remember or process. I played some 80’s music for him and showed him a picture of Thea! I’m going to be closer to him for the next week and plan to camp out more so that I don’t miss any time he is awake. PT will come back in a day or two to work with him again. Please continue to pray that the bleeding doesn’t return and his brain gets back to midline!! Love to you all!

July 1 Post surgery - We are praising God for today's positive news! Surgery was considered successful as they were able to scrape the blood off of the top of the brain and place hemostatic cloths on it to help absorb additional blood. And beyond that - as a result of such a massive shift in his brain, the surgeons were able to see the top of the blood clot in the lower vein and remove a portion of it. This is HUGE news. It has not decreased in size at all to date and was considered too risky and delicate to try and get to through surgery originally. We are so encouraged. The doctors do want to put him back on the blood thinners soon after a brief break. While it seems they can cause more bleeding in Matt's case, it is also critical to help prevent more clots. Please pray that the blood thinner doesn't cause issues when he is put back on it. Pray that bleeding doesn't come back (something we've been warned could happen despite the surgery). Pray for pain relief to really kick in for Matt, and please pray against infection as a result of the surgery which would not be good.

July 1 - The neurosurgeon team made the difficult decision to move forward with a risky brain surgery to help remove some of the blood from Matt's brain. This procedure started at 3:27 pm today. We are actively asking for prayer. Todays scans had shown more bleeding and swelling and while they wanted to avoid surgery because of the risks, they decided to move forward when it was determined that he was at risk for herniation, which would be catastrophic. Please pray.

Original story below:

Matt has been deployed overseas since January and in March, Claire and Thea moved down to Rock Hill, SC to live with family until his deployment ended in November. However, Claire recently broke her ankle and had to get surgery on June 21st. Matt was given permission to take an emergency 4-day leave to be home for her and surprise their 2-year-old daughter, Thea.

He arrived home on Saturday, June 22nd and spent a few hours with them, but the following morning looked very different. Around 11am on Sunday, June 23, he had a stroke. Claire called 911 to take him to the hospital and had her neighbor drive her and Thea behind them. By 5:30pm, Matt was being airlifted to the Neuro ICU in Charlotte, NC.

He has a blood clot in a very delicately placed vein along with hemorrhaging on the back left side of his brain, impacting his speech, comprehension, etc and affecting the motor skills on the right side of the body.

On June 27, the CT showed swelling in his brain had gotten worse, significantly shifting to the right. This originally came from the blood clot (that hasn’t changed in size) which then caused the hemorrhaging to expand and push. The neuro team made the difficult and risky decision that he needed immediate brain surgery (craniectomy) to relieve the pressure and prevent downward swelling into his neck. They told Claire there was a chance the bleeding could return, and he would need the surgery again.

The surgery was deemed successful but by June 28 scans showed some bleeding on the outer layer of the brain slowing down the process of his brain moving back to midline. They inserted a tube in the back of his head to help drain the unwanted blood. The doctors will have to continue to monitor this through scans to determine if they have to go back to the OR to suction it out.

One June 29th, Claire came into the room and Matt’s eyes were open. When he saw her, he reached for her hand and started crying. She showed him a picture of Thea and he cried again. He saw Claire's mom and cried again. He tried to utter words and sentences, some of which were understandable and even tried to sit up in the bed. This was about 30 minutes of activity and then he suddenly went unresponsive. Doctors confirmed he had two back-to-back seizures.

As of June 30th, he has not had any more seizures, but he is being monitored for them and that he can consistently stay breathing on his own, with constant neuro checks by the medical team and regular CT scans. The latest scans have shown no change, which at this point is good news.

Ultimately, he could be in the Neuro ICU for at least another 2 weeks and then move to the general ICU. From there he would be moved to rehab for 24/7 treatment. Claire has been told repeatedly that this will be a VERY long road to recovery.

So many of their family and friends have reached out, offering transportation, care of Thea and food and we are SO thankful.

We have decided to start this GoFundMe in anticipation of the long road ahead.

The immediate financial needs are for expected and unexpected costs over the next 6 months which at a minimum include:

1. A flexible housing solution close to the hospital for the next few months. Claire's current home is 40 minutes away from Charlotte. With Matt’s up and down results and constant status of being in ICU, she is eager to remain close but be able to create some normalcy for their daughter. She also relies on transportation from friends and family with her very recently broken ankle.

2. Bills – While Matt is military, Claire’s surgery came with additional medical bills that have already been received. The ankle break was in multiple places, and she was told a minimum of 3-4 months of recovery time.

3. Loss of income for Claire as she manages the family care full time.

4. Care for Thea – Thea can go to daycare occasionally but at an extra cost to their expenses.

5. Care for their dog, Kenobi- This largely depends on if the temporary housing options that are available, allow pets. If they don’t, she will need to find alternate housing for him or board him.

Even if you are not able to donate, we would be blessed by you sharing this with other people via text or socials, which can make a huge impact. If you are friends with Claire on FB or Instagram, please tag her as well.

Other needs.

1. Most importantly, prayer. It is the most powerful thing we have. And we have seen God move in all the details, but he is the ultimate healer. We are so grateful for all the prayers, even from people who don’t even know him. They are a blessing.

Immediate and most important prayers are that the outer bleeding and swelling would decrease, NO infections, rest and recovery for Claire. For those who don’t know, Thea was diagnosed with heterotaxy at birth. She is a strong and adaptable doll baby who goes with the flow, but we are asking for extra prayer against her getting sick which could cause a big strain on the situation.

2. Meals – we will look to set up a meal train once Matt is out of ICU and Claire has a more stable location or back home.

3. Transportation – Claire has a lot of back and forth to manage while she is unable to drive.

4. Care for Thea - Occasional babysitting while Claire is visiting Matt at the hospital.