Daily Fight

I have copied the daily updates sent to family and friends in order to track David's daily battle with Guillain-Barre syndrome. I will update frequently to follow his progress.

11/7
-Please pray! David is getting admitted to hospital (after several hours in ER). spinal tap and MRI ordered. pray we get answers.
-David is in first hour of MRI now. another hour and a half after that. thanks for your prayers!
-first part of MRI done. with have results with neuro in the morning.
-David has been experiencing body numbness, impaired gross motor control and a variety of other bizarre symptoms for several days. Thankfully he was admitted today and the needed neuro tests were ordered. We are 1/2 way done with the MRI. First set took 1.5 hours. :( After that, they will decide if it is safe and/or necessary to do spinal tap. We will meet with neuro in the a.m. Thanks for all the prayers!
11/8
-Getting spinal tap in a few minutes. David has lost reflexes in his legs and motor/muscle control is weakening. Neuro has ordered nerve testing and has some ideas, which we are thankful for.
-spinal tap done. will have results in a couple hours and hopefully nerve conduction later today.
-waiting for results, but doctors are moving forward under the assumption of Gullian Barre syndrome. plan to start treatment this evening and nerve conduction tomorrow. so thankful for any idea at this point!
side note: in addition David has 3 herniated discs that are completely unrelated to current symptoms. it at least gave his doctors a good idea of his pain tolerance!
-Spinal tap results were clear...which is a good thing, but takes us back to square one. Sitting tight tonight and waiting for nerve conduction in the morning. They are not starting any course of treatment. Please pray for David's spirits.
update: nerve conduction in the morning and second spinal tap ordered for Tuesday. Best neurologist quotes of the day: "He has the body of an apollo god!" "Getting the spinal in was like going through a forest of muscle." We are grateful for moments of laughter. :) We also got to take Zach for a 20 minute patio visit which was great for David's spirits. Please continue to pray!
11/9
-On my way to hospital now. Rough night last night...ended up with morphine for the pain and began heart monitoring because numbing sensation is worsening. They want to monitor his breathing in case it moves faster than expected.
-frustrating morning: worked for 2.5 hours to connect with dr. and neuro. after a couple calls from great friends in high places we finally connected. no nerve conduction until 5 but will have special visit from neuro soon as symtpoms are worsening. we are so grateful for your prayers.
-Praise God!! Finally saw neuro (2 hours after promised) and she IMMEDIATELY agreed to start IVIG (treatment for GBS) after seeing his detioration. Nerve conduction still happening at 5 and will most likely just confirm the course of treatment. If anything different shows up they will stop. For now we are so grateful to begin!!
- just started first treatment. $30,000 a bag!!! thank you Lord for great insurance! this is the first of 5 bags assuming things go well. each treatment takes 5 hours.
-After a long day of tests we are feeling very encouraged! Nerve conductivity test provided 80-90% confirmation of Guillian Barre Syndrome. So thankful now that the spinal tap was clear because this indicates that we caught it so early it wasn't even traceable! Doctors are optimistic for the possibility of full recovery.
-So many answered prayers today! It is now time to ask that we could see some sign (no matter how small) of improvement for David's symptoms. It is still terrifying for him as he lays unresponsive to everyone's pokes and prods. 1st treatment down...4 to go!
11/10
-Long night again. Still in a lot of pain, but hopeful for some sign of reflex by 6 pm! We got very excited this morning when he held an ice cup and felt a slight cold senstation after 2.5 minutes! Your encouraging words and prayers are keeping us going, thank you!
-Exhausting day! Helpful appointment with neuro, first physical therapy session and now starting bag #2. Highlight: lunch with Zach by the fountain! :) He reacted to the temp of the room today (first time!) and noticed that I rammed his foot into the wall while pushing him in the weelchair! I promise it was just a test...oops! :)
-Just feeling VERY TIRED from all the activity. Please pray for good rest along with continued improvement. Neurologist said it could be a matter of days or weeks before we see significant changes in the right direction.
-Treatment #2 completed! It is really taking a tole on his body and the 5 hours it takes to administer is nothing but miserable. Please pray for peace and rest tonight. He is experiencing severe pain and discomfort. While we had several encouraging moments today, David is continuing to lose muscle strength and control.
-We were given a devotional this morning and today's reading was about challenging circumstances and God's empowerment (love God's timing!). Trying to rest in the truth that the Lord will provide the strength we need for the circumstances of EACH new day.
11/11
-Another rough night. David is experiencing extrememly negative side effects to the IVIG and other meds. It's hard to assess for change in symptoms while he is dealing with the side effects. Please pray for strength and encouragement as we face physcial therapy later today.
-Very long day...discouraging PT and extreme exhaustion. Meeting with neurologist tonight left us with many questions. She is bringing in a second neurologist in the morning for another opinion. David is presenting so atypical and she still has questions about what is really going on. Still continuing with treatment, but please pray that the severity of the side effects subside. Will update after 2nd opinion.
11/12
-2nd neuro confirmed diagnosis of GBS. No way to have time line of turn around. He said that David is not experiencing side effects of IVIG, it is the GBS worsening and running it's course. They will finish IVIG (2 more bags) and then will assess his progress to determine if plasmapheresis is necessary. Please pray for David's pain. He is constantly feeling like his nerves are on fire and is having extreme back pain.
-Now diagnosed with Miller Fisher variant-Gullain Barre Syndrome (rare variant). We have moved to DOU (direct observation unit) for closer monitoring with a central arterial line. They have decided to discontinue IVIG because or David's decline. Starting plasmaphersis in the morning.Pray for resperatory efforts (as it is diminishing) and adjustment to a feeding tube placement.
11/13
-Starting plasmapheresis! We will have 5 consecutive days of treatment, 2.5 hours each. Very rough night last night with lots of pain. But, he got his highest respiratory scores this morning and kept down some applesauce which delayed feeding tube. Praise God! Pray this treatment works and for an improved pain management plan. We are eager to amaze our medical staff by the power of prayer circulating around the world!
-Good visit with Neuro. All are encouraged that things have not worsened. David is alert but still in a lot of pain. Pray for comfort level to improve and that we see some sign of physical change. Praise that he is still able to eat and respiratory levels have not weakened. We are encouraged today, but still have a long road ahead. Please continue to pray for overall healing and good spirit's.
11/14
-Waiting for second treatment. Vitals are all stable today. Huge praise! We just had very difficult physical therapy...still stunning for David that he cannot sit or stand. Please pray that he would be encouraged. Sensations are increasing in his feet and legs, praise God!
11/15
-Very difficult morning. Neuro says he's stable, but some symptoms are worsening. Eyes and face are weakening. Respiratory levels were lower and blood pressure is high. Please pray for good #'s for clotting factors so treatment can continue today. As always, please pray for good spirit's and HEALING.
11/16
-Gearing up for plasmapheresis treatment #4. Clotting #'s are low, so they will give David plasma. Thankfully his respiratory #'s are still high enough, but weakening every day. His vision is starting to be affected in 1 eye, but docs are telling us not to be discouraged until treatment is over. All this being said, we are feeling HOPEFUL today. Thank you for your fervent prayers.
11/17
-Pretty good night considering it was #10! Treatment #5 today. They will decide later today if they want to do a #6. Increased numbness in stomach, but still breathing, swallowing and talking! Please pray that once treatment is finished he can get off all the machines and transition to an acute rehab center closer to home.
-Treatment #5 finished. They will give David's body a day to rest and go ahead with a 6th treatment on Thursday. While nothing is considerably "worse", today has been difficult. Please pray for God's peace and rest. Respiratory #'s are continuing to decline, but still sufficient.
11/18
-Praise God for small signs of encouragement! Respiratory levels were same from last night (not worse!) and David put on quite the show for his docs...raising his legs a couple inches off the bed and raising 1 arm almost over his head!!! Day of rest from treatment. Kidney ultrasound later to check slightly elevated levels (most likely from all the meds). Thank you for your prayers!
11/19
-6th and final plasmapheresis treatment completed! It really drains David. Waiting for follow up regarding elevated levels in liver. Movements and respiratory same as yesterday...not declining! We are now waiting for doctor's release to acute rehab here at the hospital. Don't know timeline, he will have to be off of all machines. David is SO energized by the prayers coming through the beeper!! Thank you!
-Just saw liver Doc...enzyme levels VERY high (started at 30, now 1500). Please pray that this is a result of treatments and that they will start to decline. Otherwise we are looking at a liver biopsy. David is loving the beeper...buzzing non stop!! :) He tells everyone who walks in his room, "someone just prayed for me!" It's SO encouraging!
11/20
-Liver enzymes down by 50%!!! Praise God! Difficulty breathing last night, just did chest x-ray to check things out. Respiratory levels down from last night. Exhausting physical therapy and very tired today. It is quite the recovery from the pheresis treatments. Please pray for peace and patience while we wait on God's timing.
-Having difficulty breathing and developed low grade fever. Starting breathing treatments with respirator and starting antibiotics. Please pray that breathing treatments stay "as needed" and not permanent. Also starting PIC line for nutrition.
-David is now in ICU. He is intubated and sedated. We are waiting for results from CT scan. Also has fever. please pray.
11/21
-David is stable! They are treating him for sepsis. Temp is finally down and BP is high enough to keep him mildly sedated, which is so much better for him! Respiratory levels are better and responding to the ventilator the way they should. He understands what happened and will hopefully not remember the CODE. They will address feeding this am and develop a plan soon. Thank you for your prayers!!!
-Much to be thankful for this am! Great nurse pulled some strings and got a 10 min visit with Zach approved! Such a special time. Everything is still stable. Chest x-ray this am showed some improvement. Treating sepsis from aspiration. Pray that lungs and infection clear. Pray for David's comfort in dealing with this ventilator while awake. God is GOOD!
11/22
-David is still stable this morning. Temp spiked again last night, but started another antibiotic and it is now under control. Increased discomfort with ventilator, but David is working hard to communicate with his letter board and is his funny, fiesty self! He is such a fighter and we are celebrating God's miracles so far!
-We've seen several docs this morning, all with encouraging news. Identified strep in his lungs and started new antibiotics. Liver functions are better, running additional scans later to cover all bases. White blood count is showing improvement and neuro says strength is better than yesterday
11/23
David is still stable! Hopefully only 1 more day on the ventilator. Strep neumonia is clearning with antibiotics and all vitals are looking good. His awesome nurse Patrick helped him sit up today for the first time! He is getting stronger every day and has an amazing attitude!! Keep praying...he is still very vulnerable.
11/24
Ventilator is OUT!!! David is doing well breathing on his own. Please continue to pray! He is still vulnerable to infection and needs to regain his swallow reflex. Praise God!!
11/25
Huge encouragements this am! David passed his swallow eval last night and this morning and is starting on thick liquids. There is talk to transition back to DOU (direct observation unit) today or tomorrow. All vitals are stable, but still weak and exhausted. Please pray for small signs of daily physical improvement to keep spirit's up!
-We are moving to DOU this evening! While this is scary for us, it affirms that David is improving! He was able to sit up again today (with assistance) and has done well with feeding all day. I finally updated our family blog (and will continue to do so!). Feel free to check out pictures and more details at www.newkirknews.blogspot.com
11/26
We have thankful hearts this morning. We moved to less intensive care last night...what a Thanksgiving gift! David is stable and continually showing improved strength in many areas. So much to be thankful for! Bottom line: thankful for a GOOD God. Happy Thanksgiving! Thank you for your continued prayers.
11/27
Night #20 in the hospital...who knew it would be the best night! David is making steady signs of improvement and all are AMAZED at his recovery from Friday! Every day is a day of thanksgiving for our family. We almost lost David on Friday night and today they are talking about rehab for next week. Overwhelmed by God's miraculous power!!
11/28
Continuing to make improvements each day. Just had very difficult physical therapy...please pray that David would not be discouraged. Swallowing is improving and his breathing, heart rate, etc. are all normal!
11/29
Just got confirmation: going to rehab tomorrow!!! While this is very exciting, it is also very scary for David. They are making decisions later today regarding nutrition, machines, etc. Please pray for wisdom in these decisions and for David as he deals with the many "fun" side effects from being in bed for 23 days!
11/30
-Exhausting morning with physical and occupational therapy! On our way to rehab...it's really happening! Time to gear up for 6 hours of therapy a day. Still waiting for results on liver. May have to do biopsy if blood work doesn't provide any indication of why his levels are still off. Thanks for your continued prayers!
-Getting settled in private room (thank you Lord!) in rehab center. Dealing with being off pain meds, exhausting transition, nausea, etc. Please pray for David through this difficult transition. Upside...he's the party here! He's the youngest by at least 50 years! :)
12/1
Day 1 of rehab done! David fully participated in 6+ hours of therapy and blew everyone away! He even got a round of applause from the elderly group watching! :) Liver enzymes are NORMAL, which means no biopsy! Praise God!! Clinging to the verse from our devotion today "...but be of good cheer, I have overcome the world." John 16:33
12/2
Enjoyed the sunset and sunrise together in David's corner room full of windows! Therapy is intense! Already been in wheelchair twice and the day is still young. Please continue to pray for David's endurance...lots more work for today! Verse of the day: "The Lord's loving kindnesses indeed never cease, for His compassions never fail. They are NEW EVERY MORNING; Great is Your faithfulness." Lamentations 2:22-23
12/3
Encouraging day so far! We had a great visit on the lawn WITH ZACH! David got to watch him crawl around the grass and play. :) He is rockin' the therapy and is making huge strides daily. Breathing treatments discontinued this morning and everything else is stable. Thank you for your continued prayers! David is working very hard!
12/4
Day of God's provision!He is doing well in therapy. He is having some issues with medications, please pray for the side effects from 27 days in the hospital. All are hopeful that he will be home by Christmas...or at least get a "Holiday pass"! :) Therapy is rigorous! In wheelchair today 4 x! It's quite the adjustment to retrain his muscles with a body that is 40 pounds lighter. Thank you for your continued prayers.
12/5
Day of rest from full therapy schedule. Please continue to pray for David's liver. His enzyme levels are up again...and they don't know why. We are hoping to get to the bottom of this without having to do a biopsy.
12/7
1 month down! Working with machines to try and stand up and doing well in wheel chair. Had a brief visit with Zach yesterday and David graduated to a normal diet today! Still waiting for further tests on liver, thank you for your continued prayers.
12/9
HUGE PROGRESS TODAY! David took 2 steps on the parallel bars!! He finally believes that he will walk again. :) He finally got a shower (after 1 month!) and is feeling really good. Obviously having more pain because of therapy...but David says it's all worth it. Thank you for your continued prayers, buzzing and all!
12/11
Good restful day. They are being careful not to push him too hard, so much to David's dismay, they made him do the same as yesterday. More liver tests done today. We will hopefully know beginning of next week. Excited for a holiday pass next Friday for family Christmas, but we have a lot to do before this. We will start home training for transitions, safety, etc. Please pray that David can transfer to a car easily.
12/12
AMAZING morning! Liver enzymes are DOWN and almost normal, praise God!! David is a PT rock star! He got determined, told the PT to back up...then stood up from wheelchair to parallel bars 100% independently! Then took 2 steps 100% indep!! This involves so many steps, more than we ever realized! It means that his arms, legs, trunk and brain are all working together!! Thanks for your prayers. David feels the power!! :)
12/15
We have the official word that David will be home Christmas Eve! They are releasing him a bit earlier than usual, and will transition to a more intensive outpatient schedule. We are very grateful for this.
I have updated our blog...including a video of David walking!
12/19
Wonderful day at home yesterday to celebrate Newkirk family Christmas before everyone leaves for Puerto Rico. David did awesome and handled the transition like a champ! Huge bummer to come back...but only until Christmas eve!! He is continuing to progress. He is now using a walker and doing amazing!! Thanks for your prayers!
12/22
Preparing for assessments tomorrow!! We all know that he will pass with flying colors so that he can come home for good on Thursday. :) He will be transitioning to outpatient close to our home, PTL! He got back his soft touch sensation today, but still no reflexes. He is learning to function without...amazing! But we know that they will come back!
12/24
49 days later... His wonders never cease! David is HOME! Merry Christmas from your family to yours. Enjoy celebrating Christ's birth, The One who makes ALL THINGS POSSIBLE!