Support Tim and Haliey Weber Through Medical Crisis

Update: Thank you so much to everyone for your support. The donations and the prayers are being felt. Webers are humbled by your generosity. I have decided to up the goal due to Tim’s extended hospital stay and the costly infusion. See Haliey’s update below. - Lisa K

Tim Update 8/28 evening

They have upped his morphine dosage as it’s been in his system for almost 48 hours and he is still staying around a 4-5 pain. Our neurologist would really like him to get stable at a 2-3 before discharging him. For the past three days he has been staying in the 5-7 range with average being 5 on the pain scale. (Please note that doesn’t sound high but his pain tolerance is very high. As his mom explains it “that’s like an 8 or 9 for you or I.”)

After discussing all possible care routes from his test results, current care plan, and inferences from other doctors at UW, they have come to the conclusion that they will treat him as though this is his Parsonage Turner Syndrome (PTS). Their focus is to get his pain down and also slow down more nerve damage. (Another reminder that God is with us: Yesterday the on call Attending Neurologist at UW was an Auto-Immune Specialist. Our neurologist told us that never happens. She was pleasantly surprised.)

Based on research, PTS reacts positively to steroids. And that has been true for Tim these last few weeks as his pain spiked again when his steroid began to taper out and he was no longer on it anymore. That’s what brought us back the ER on Saturday. They placed him on a higher dose of his steroid, along with oxycodone, and Tylenol as needed to work with the higher dose of morphine.

They also made the decision to begin an immunoglobulin transfusion: IVIG. Basically when people donate blood they are able to take their antibodies to help normalize a compromised immune system. In Tim’s case they hope it will slow down the nerve damage and inflammation which is what is causing his excruciating pain. This process will take four days with close monitoring as there is risk of heart attack, stroke, or blood clots. We are not sure if this will be successful as it isn’t something that works for everyone. It’s very experimental.

He received his first infusion this evening around 6:00 and his body is accepting it really well. It can take about 3-4 hours so he will be done soon.

Again, we cannot thank everyone enough for the amount of support we have received. And are especially overwhelmed with the giving in the GoFundMe. There are so many of you whom we haven’t spoken to in years! (Going back to high school!) We are so touched and really are giving thanks to God for his faithfulness. Please continue to pray for his pain and that this IVIG will be successful.

Update:

Wed. 8/28 - Tim is still in Confluence Hospital in Wenatchee and has started undergoing an experimental treatment this evening called an IVIG Infusion. This is a 4-day procedure which uses intravenous immune globulin (IVIG) therapy to treat individuals with Parsonage Turner Syndrome. At this point the cost is unknown with one treatment costing somewhere in the $3000 range and the course of treatment is upwards of $30,000. They are not yet sure if insurance will cover these infusions as they are still somewhat experimental for PTS. Tim was unsure if he wanted to undergo this procedure, but he is currently on the highest doses of morphine to control his pain and it's not working. The doctors will not let Tim go home until they have the pain under control so at this time he will remain in the hospital.

Tim and Haliey are overwhelmed by the outpouring of support from notes, texts, phone calls and all of the generous donations on this GoFundMe page. Last night they felt that they had turned a corner to be able to face this situation and know they are not alone. Thank you so much. Please continue to pray that Tim's pain will start to subside and please know that they are beyond grateful for all of your prayers and financial support. - Kim Weber

Tuesday, 08/27

Dear Friends and Family,

As many of you may or may not know, Tim has been in and out of the hospital and emergency room over the past few weeks, which has been incredibly tough both physically and mentally for himself, his wife Haliey, and their extended family. He has undergone several MRIs, extensive bloodwork, and EMG testing (nerve stimulation tests), which are very painful.

If you have been part of Tim's life journey, you will know he was diagnosed as a high school student with Parsonage Turner's Syndrome. At that time, Tim lost the use of his left arm and had to have an experimental nerve surgery to reroute around damaged nerves. It took years of healing to get his arm back to where it is today.

Currently, the neurologists in Wenatchee have been working diligently to diagnose Tim's current situation, manage his pain in his neck and right arm, and get answers to whether the PST has returned once again; or if he has an additional set of unknown medical challenges or both. The road is unknown, but what is known is that it is going to be a long and very challenging time for both Tim and Haliey.

At this time, Tim is still hospitalized in Wenatchee and the team of doctors are determining the go forward plan which hopefully includes moving him to UW Medical Center for more extensive testing and treatment. Haliey has been by his side day in and day out. Haliey is a teacher at Quincy High School and the first day of school is tomorrow, August 28th. She has been his rock, his laughter in times of sadness, and his prayer warrior when he needs a moment of hope. Not only are we wanting to support Tim, but we are also here to support Haliey; giving her strength in her time of need, relieving her worries of financial stress to get Tim the care he truly needs, and to offer words of encouragement, love, and support.

The funds donated from this GoFundMe account will go directly to Tim and Haliey to assist with the mounting out-of-pocket medical expenses, as only 75% of his medical expenses are covered by insurance. Also, since Tim will be out of work for an unknown period of time, they will be living on a single income for the foreseeable future, and it will be imperative Haliey remain working at QHS to carry their medical insurance and financially support them.

So, what is PTS? Parsonage - Turner Syndrome (PTS) is a rare neurological disorder that primarily affects the nerves in the brachial plexus, a network of nerves that control the muscles and sensation in the shoulder, arm, and hand. The syndrome typically presents with sudden onset of severe shoulder and arm pain, followed by muscle weakness or paralysis. Although PTS usually occurs as a one-time event, some individuals may experience recurrent episodes or suffer from long-term disability due to incomplete recovery, chronic pain, or persistent muscle weakness. There is NO CURE for PTS and treatment focuses on managing symptoms, pain, and supporting recovery.

The physical impairments caused by PTS can make it difficult or impossible for some individuals to continue working and patients often need to adapt their daily routines and activities to accommodate their physical limitations. Ongoing medical treatment, physical therapy, and pain management can be costly, and time off work can lead to financial difficulties.

Tim and Haliey are so grateful for each and every one of you that have sent encouraging texts, phone calls, Venmo's, door dash, food delivery and the list goes on. They know they are part of a special community, and this is when they need their village the most.

Please keep Tim, Haliey, and the Weber family in your thoughts and prayers.

I have asked the family to continue to update here on Tim's medical condition as there are changes and/or updates so please check back.

Thank you in advance for your support.

- Lisa Karstetter (friend and neighbor)