Will's Lemierre's Disease Journey
Saturday December 21, 2019
Sunday December 22, 2019
1:29 PM
In every war there are setbacks to deal with. Will will be going back to the ER this afternoon as per the doctor's request. They have found another infection in his blood. They think it is Lemierre's disease which is a very rare infection and can cause abcesses in the throat. He will need another scan to make sure so we are headed back.
9:40 PM
Will just went through a very painful draining procedure for an abscess the size of a racquetball right by his right tonsil. This was holding the blood born pathogen that has been the root of all evil. Docs still don't know exactly what the bacteria is and are running tests to find out but are calling it Fusco form bacterial infection. He is doing much better with the lump gone. Doc said if they hadn't gotten to ti that it would have burst and ended up in his lungs and kidneys causing sepsis. He will be in St Pat's hospital for at least the next 48 hours to monitor and receive IV antibiotics. God willing we will be having Christmas at home instead of the hospital. We are still not out of the woods and there may be more battles to fight but we will fight them as they come and hold on to hope and faith even if it is by our fingernails. Will has been an absolute warrior in his focus and resolve. The Odom blood runs strong in him. On a lighter note, they just gave him some steroids and they said it would really hop him up. They were not wrong!!! He is high as a kite, in good spirits, and currently running for mayor of crazy town:) He also has no idea who he is or where he is.
Monday December 23, 2019
3:28pm FB Update
I can’t keep up with all the texts and messages pouring in so please understand if I don’t answer my phone. So much has happened ... 4 hospital ER visits within a week, ambulance ride to St Pats in Missoula, 1 excruciatingly torturous procedure last night without sedation names of diseases and bacteria I’ve never heard of and now this. Please pray. Here is Joes update: A war has many battles 😒. We were just informed that Will has to go into surgery. They did not get all of the abscess and it is in such an awkward spot that they will have to put him out completely to get at it. They have found some other minor clots. One in his jaw and a couple in his lungs but these are small enough that they can hopefully be taken care of with antibiotics. They are prepping him for surgery now and are not wasting any time. Again. Continued prayers are needed 🙂. Thank you. His spirits are pretty low but he is tough as nails and hanging in there! Will just ate lunch but even so they are putting him under ASAP. Doc says it is urgent enough to risk because of the infection in his blood. They have confirmed it is Lemierre's Syndrome and they are not messing around now.
From Joe:
Will is out of surgery and two tonsils lighter as well as a hideously huge and hidden abscess tucked behind his right tonsil that was the left over from yesterday’s procedure that could not have been gotten any other way. He is a bit loopy and saying weird Will type of things and going in and out of sleeping. Doctor had a big smile and felt like things went really well. We are cautiously optimistic and have learned that there may be other twists and turns ahead of us on the 2019 Christmas roller coaster ride. Keeping the faith and hope that he is in Lords and hands. After all hope is everything right ...at least that’s what we keep repeating to each other Love to all
Tuesday December 24, 2019 FB Update:
Christmas is all about family! We had the most sacred Christmas Eve in the hospital with Will. We laughed, we cried, we held hands and we prayed. Update on Will: Recovering from that nasty Lemierres syndrome as well as collapsed lung from pneumonia. Mono has been ruled out. White blood cell count has gone from 25 on Saturday to 15 today 😌 He still can’t eat and is starving! His hospital release date will be determined as he progresses but we’re hoping by New Years. Once home he will continue IV infusions at Marcus Daly hospital for a while. He’s got a long ways to go but I have faith in all his baby steps! And we all have faith in our Savior Jesus Christ as healer, rescuer, and deliverer as today is the day we celebrate Him! Merry Christmas from our family to yours! Thank you for all your prayers. We feel the power that comes from such an outstanding support system of friends, family, and hospital workers!
Christmas Eve with my sweet Sir Will!
When he said he felt like he was breathing though a straw...he wasn't kidding...here's the proof!
Wednesday December 25, 2019 Christmas and Jansen's 25th Birthday
(Brothers)
The closest we could get to a stair picture...youngest to oldest on Christmas Day!
The Gwynns brought us an entire Christmas Day Feast! We had turkey, ham, mashed potatoes, gravy, rolls...the works!! They even brought him a Christmas tree with Dan-dy canes on it before Christmas.
6:24 pm Adam gave Jansen a blessing and he's like a new man! He just said our family prayer and I was blown away with his optimism and gratitude for everything including the doctors and nurses! The spirit is sweet in our home and Jansen decided to sleep upstairs tonight. So many tender mercies! Tell Will I love him!
Response to above text: Love ya, You're hot. Literally hot. This room is cooking. We had to turn it down;) Will just had his blood thinner. (Injection in his belly) He walked down the hallway and back and had at least a few sips of protein milk and the Breeze and is eating ice chips again which is a good sign. It's not much but it's something. I had a talk with him about being a fighter and that his body has to have calories in order to fight. Our motto tonight is from Hacksaw Ridge where he keeps saying Please Lord help me get one more. So we are trying to get one more step. One more sip. One more minute. Simply trying to get one more of whatever it takes to climb the ropes of Point du Hoc. He is fighting and will continue to fight. WILL-I-AM going to get one more!
I just sent this text to your mom and dad as well as my mom. I have to share an experience with Will's three remaining living grandparents.
My brother Dee came up to see Will today and Dee is my brother that sees dead people. I know it's crazy and he literally might be crazy so keep that in mind.
Anyway... Will's voice has been super weak and oddly enough it makes him sound just like my dad so it has been very tender to me to hear my dad again. I miss him.
I felt inspired before he went into surgery to tell him that he would have a few minutes where the veil would be very thin and to say hi to my dad for me. That was two days ago.
This morning when Janen and I gave Will a blessing with consecrated oil, I again felt inspired to tell him that Will would feel the protecting power of his ancestors on the other side of the veil who would accompany him through this journey of pain and recovery.
I didn't know Grandpa Odom very well or anyone on the Matthews side but my thoughts kept turning towards three people...my dad, Grandpa Odom, and Grandpa Matthews.
When Dee showed up this afternoon he went to Will's room and was alone with him for about five minutes. I jokingly said to the rest of the family in the waiting room that I better go rescue Will from Dee and the dead people. I know...poor joke on my part.
I walked in and immediately turned around because I felt like I was interrupting a meeting. I asked Dee afterwards and he didn't really want to talk too much about it but said that the first person he saw when he walked into the room was my dad standing by Wills bed and then he said there were several others there who he didn't recognizer but suspected they were from Allie's side of the family...
I don't have any experience in these things and I have not ever seen the other side of the veil nor do I pretend to be definitive about if Dee actually saw them but what Dee was saying was exactly in line to the feelings and promptings of the priesthood blessing Will was given earlier in the day.
I don't know much and I certainly can't see them but I feel the love and protection from the other side. And I feel they are here to help Will and not take him with them.
Sorry for the long text but I wanted to share with the three of you (his grandparents). Love you guys:) -joe
Thursday December 26, 2019
8:05 Will is getting the ultrasound now. Radioligists will read it pretty quickly hopefully.
11:47 am: FB Update
“Weather report from St Pats....Cloudy with intermittent spots of sunshine. The echocardiogram came back looking really good which means no clots in the heart! There was only one spot of slight concern that they saw on one of his valves but they believe it was just the angle and not an actual clot. They had a second and third opinion brought in but all agree it is more than likely not a clot but will watch it closely regardless. It does not change the path of treatment he is on.
His blood count is 17.5. Doc says that may fluctuate up and down a bit for a few days. They have put him on a blood thinner to prevent other clots from forming because of being post-op as well as laying in a bed.
If there is a word for the day so far I would say that it is DETERMINED. he went on his second walk today and this time he didn’t stop at one loop around. He kept walking right on past his room. I asked him where the heck he thinks he’s going? He responded with “I’m not getting any better laying in that bed”. It ended up being about a 5 minute walk instead of the 2 minute walk earlier and the 1 minute walk he had last night.
I have felt more like coach than dad today but he is asking me to push him so I will. If he doesn’t make it at least 3 loops next time I will make him drop and do push-ups as well as suicide sprints
On the food front...His goal is to take 6 sips of something every hour. He actually had a few bites of oatmeal and apple sauce. He’s having a hard time getting anything including water past those open gaping and raw holes in his throat. Like I said he is determined. He is wiped out and trying to fall asleep to McGyver :)”
Friday December 27, 2019 (Hagan's Birthday)
Will got a very good nights rest. I was able to keep the nurses away every time they came in. I felt like a watchdog but he got a lot of needed rest. He is doing better this morning. Voice is stronger and he is able to perform multiple swallows instead of just one labored swallow. This allowed him to get about half of a meal shake down for breakfast which is much needed. Will said “would that be horrible if I died of hunger in the hospital?” And so he started sucking and swallowing 😊
We put his shoes on and went on a field trip to the 4th floor which disappointingly looks just like the 5th floor so we went rogue and went to the chapel on street level. We felt like outlaws on the run. We made it back safe and sound and no one was the wiser. He’s a little worn out now but watching McGyver and trying to beat his high score on the sucky thingy.
5:49 PM Text
Iron Will update...Will had a really good day today. He is doing much better and his throat is healing slowly allowing him to get a little bit of nutrients past his inflamed angry holes in his throat. The calories are much needed and huge step in the right direction. He went on several walks and enjoyed the company of family and friends.
The doctors put in what is called a PICC line in preparation for him to go home when the time comes. The PICC line will allow him to take his antibiotics by IV once per day by going to the hospital. Assuming Will can show that he can start to eat and move regularly there may be a release from St Pat's as early as Monday. We are keeping our fingers crossed as Will continues to move in the right direction.
Rocking those compression socks though!
And Joe is basically THE Man...rocking his new beard that he refuses to shave until Will is out! He is my rock! He is my everything!
Saturday December 28, 2019
9:35 AM 2 steps forward one step back. Doc says that the fluid on his left lung has increased significantly so they are doing a draining procedure right now to take care of that. They numb the area and then use ultrasound to know where to go in from the outside. Another painful procedure in this long saga. Doc is confident that this is the way to go and will actually speed the healing process even though it will be uncomfortable. Say a prayer that all goes well. Will and I feel good about this and he is strong about doing what is necessary.
11:05 AM Ok...just breathe...what a whirlwind this journey has been and may conintine to be!
Will just got out of the procedure that's called "No that's not syrup for pancakes procedure". They numb a spot between the ribs and then go in with a syringe followed by a draining tube to pull out the fluid.
That fluid was building around and on Will's left lung which was essentially collapsing his lung and severely restricting his ability to breathe. The procedure went well and they feel like they were able to get most of it. X-rays and CT Scan will confirm.
He is doing well and in surprisingly good spirits even though he is worn out.
FB Update:
Two steps forward…two steps forward. Ok, the last update sounded a little scary and it was but the outcome is actually quite positive! The procedure that Will had done is called ThoraCentesis or more commonly known as Tyrannosaurus rex .
.
They pulled out about 1/2 of a liter of Dr Pepper from around his left lung (not inside the lung). That increased build-up was making it very hard for Will to breath and was collapsing his lung. If they had left the fluid?…over time it would coagulate and form abcess pockets of infection.
The Doc is very optimistic about the procedure because the initial tests on the fluid is showing that it does not have the infection in it. He is able to get some food down his throat today as the holes in his throat continue to heal. I’ve included a picture so that you can see the top of the open hole of where his access was. It goes crazy deep down into his throat. He is breathing better and actually feeling quite a bit of relief as a result of the painful but short procedure.
The pressing issue Will is facing right now is that his computer battery died half way through a McGyver episode. Now we will never know if he was able to successfully build the bomb and escape.
Saturday afternoon: Jansen gave me a priesthood blessing! It worked...Enough said:)
Morgan, Carlie and Will headed up allowing me a much needed day of rest and time to write this whole blog entry;)
And Will finally got that Caprisun IV;) Haha! He named his IV contraption Delbert.
Update for the family on Iron Will: Full speed ahead Looks like Will might get released today from the hospital. Doctors feel really good about his progress and his ability to continue recovery at home. He still has a long and slow recovery process ahead of him but everything is pointing in the right direction.
Looks like Will might get released today from the hospital. Doctors feel really good about his progress and his ability to continue recovery at home. He still has a long and slow recovery process ahead of him but everything is pointing in the right direction.
He will more than likely not be able to go back to college as he will need about 4-6 weeks of daily IV antibiotics at the hospital in Hamilton. His white cell count is coming down steadily. Recovery will come with its own set of challenges both mental and physical but he has proven he is up to the task. Thank you all and don't forget about him in your prayers as he moves forward.
Gods hand has certainly been evident as there have been way to many "coincidences " at play during this crazy week and half of setbacks and miracles. Here is just one example of a coincidence...
Most doctors will never see or deal with a case of Lemiers Syndrome in their whole career because it is so rare. However, the doctor that happened to be on call for the 7 days that Will has been here at St Pats?...turns out it is actually his third case of Lemiers and therefore he knew all of the twists and turns of dealing with this nasty infectious blood born bacteria. Dr Christian's 7 days of being the infectious disease doc on call started the day Will got here and will be ending the day Will leaves. Just coincidence? Things that make you go hmmm 🤔
We are so blessed to have been able to have our Christmas in the hospital. It will certainly be one to remember and honestly, I can't think of a better way to celebrate the season!
During our stay at St Pats we have been witness to the miracles of recovery in the surrounding rooms and the heartache and pain of loss. I know it may seem hard to believe that God can be present in both situations but I choose to hope and believe that He is...
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