Homeward bound

Drain check showed front drain working well and even flowing into the inner drains!  There was a partial blockage in the back drain.  They both have had drainage at the drain site so they replaced them both and slightly upsized the front drain.  While in recovery, the infectious disease doc stopped by and wanted to admit me for my fevers last week but she settled for cultures of what was coming out of drains and will let me know about antibiotics later this week. I have to go back in one week, but as of right now I am ok with that...just need to get a ride.  At this moment, I am in such incredible pain that I am having Jacob pull over until the pain meds kick in. Prayers and Blessings to those who are praying for me and those that need to be surrounded in prayer themselves.  Much love!

Deja vu...all over again.

My appointments this morning showed progress over the CT scan done on the 12th, but not enough to remove drains...and they upsized the front one...so at least two weeks of drains left.  It was good that the front tube contrast actually made its way to the stomach...so internal drain working!! I kept mentioning the pain management and it went in one eat ans out the other of multiple people...very frustrating...hoping for more good progress weeks and at least tube downsize or removal.

Aaron...Mr. fearless...

Aaron started crawling just before he turned 8 months and now he is fearlessly pulling himself up on everything...and that is all he wants to do...and grab things off the couch! He is teething like crazy...all that it entails...we can see 4 teeth on top and two on the bottom.  He chews his "melt in your mouth" snacks and is a champ at eating baby food! He brings us so much joy and some nights a full night of sleep too!

More of the same...

I have been home about 10 days and had to make a trip to the ER last Monday due to fever.  I still have low grade fevers, but not enough to go back to ER. I am scheduled back at VM on Monday for a drain check and follow-ups.  I am still on the pain meds and frustrated that the pain from the back drain is not going away...I am told that some pain may be with me as long as the drains are in.  I am balancing rest with getting out of the house...may be a busy weekend, but all fun stuff!! Pray that the sharp pain I have been experiencing that is not helped with pain meds goes away. Thanks to everyone praying, helping with Aaron, and sending well wishes our way!

Cuddling

I am home and still fighting lots of pain but enjoying snuggle naptime with Aaron. I am trying to balance gaining strength and resting. This is going to be a long haul but we can get through this and take each step one at a time...

PRAISE THE LORD

Our family is reunited! They let me go this afternoon and my Uncle Joe drove the first leg to Ellensburg and we met up with Jacob for the rest of the trip. 

Finishing last post

If my drains continue to work and I can get off the IV pain meds, I can come home....great news cause I am going crazy being so sedentary and not seeing my son...and living off hospital food. Jacob went home after my drain replacement...I was I'm such a condition that we had no thoughts of me going home on Monday. Goodnight everyone!

Isn't Sunday supposed to be a day of rest?

Written at 2pm:
Was doing great this morning and was excited they were doing a drain check cause they would do that day before going home...then I went to Interventional Radiology and they decided to upsize the back drain again...most of the loose fluid is gone, but there is a lot of chunky material.  This is bad news...in the fact that I will have drains for months since the thick stuff can take months to break down. These bigger drains are more rigid so from the time I woke up, I was in excruciating pain...back to mass pain reliever on schedule...hopefully just for today...and hopefully home Tuesday.

7pm:
Feeling much better and I am off the major painkillers already.  I was able to eat all of my dinner and walk a few laps up and down the hall. I got great results from my last spirometer exercise. I am chilling in bed for a quick nap and then I will go for another walk. If my drains continue to wot

Saturday morning

It is almost 11 am and already this morning I have already had a chest xray, three doctors visit, a drain tube removed (yeah!), took a walk down the hall without extraneous equipment, another xray proposed to make sure air didn't seep back into the space where the chest tube was, I got to see my husband, and a new video of my son! What a morning!

Another day closer to home

I don't know when I am coming home yet but the chest tube is the hold up...the CT scan earlier showed a reduction in fluid but also a pocket of trapped fluid.  They got on the ball and talked to the team that has put in my four other drains about aspirating the fluid using a tube that would be taken out at end of procedure...seemed successful and now I just need to keep breathing deeply to claim that pleural space between lungs and chest cavity...baby steps, baby steps...going to go for a walk tonight again...going on New antibiotic that can br given in pill form when I leave..woohoo!  Could still be deeply on meds so excuse my typos...

Love you all and want to see everyone sometime next week...

Michelle

Good Day

Today was a good day! I had a chest xray this morning and an ultrasound this afternoon.  The xray showed improvement in my lungs...I could have told them that just by my breathing.  The ultrasound showed that the clot in my leg had shrunk to a level such that no further Coumadin needed at this time...just the shots while I am cooped up in the hospital. I have been breathing deeply  and coughing like crazy to force the liquid out of the space around my lungs...with some success...hopefully enough!  I mentioned that I am not eating a tremendous amount because I can't stand the food...the Doc mentioned I could have outside food as long as it follows my diet plan...so if anyone comes around lunch or dinner...give me a call and we can plan...I can finally have spinach salad...but the dressing choices are limited....and I am dying for a Fuji or gala apple.  Or yoplait Greek yogurt.

Tomorrow is a big day...chest ct to see if my lungs are taking back the pleural space. The nurse said my left lung was still dim...not the best news but I know we have gotten tons of liquid out in the last 24 hours. Keep the prayers coming that the fluid is gone!!!

Goodnight! Enjoy the pic of me cruising the halls with my chest tube drain collector, super loud vacuum, and pancreatic drains...all carried by my wonderful bedside commode...

Hump -Day....hope we well over the hump

Wednesday started with a lovely 6am Chest xray and then a 3hr delayed tube check...luckily one of the Drs noticed that another Dr had a Chest CT scheduled next day and made the executive order to do them at once...thanks Doc! The tube check was interesting in that you are on the operating table fully awake watching them work and can see images of the tubes and they inject contrast into the drain sites like I would do when I flush the drain.  I got to see one good and not so good tube so then they sedated me and replaced one of the tubes...different than putting a whole new tube because they went down the same exact trail.  I went to recovery and got to visit with Mike & Melissa. Then we went back to my room...not knowing excruciating pain was waiting.  A couple docs came in who were dealing with the fluid on my lungs and asked if I was ready to add medicine to my chest tube that would help bring the fluid to the collection site sooner (sooner chest tube out, sooner home). They said it would not be painful...so figured it wouldn't interrupt my visit, so I signed the consent and they began. Holy crap it hurt more than my labor pains so we had to stop periodically to catch me breath...then I had to lay in four positions to spread the medicine around.  This tube had been hooked to a water-vacuum setup and they unhooked me from that for four hours...I was pretty much zonked and heavily sedated and M&M left to grab me some mio and when they got back, I was about to be moved to the 16th floor. 1662. They helped me get settled upstairs and headed home...and I was medicated...and could barely open eyes for Docs and nurses. Then it was time to hook me back up to water vacuum and take out the clamp...again shouldn't  hurt, right? WRONG...the fluid started flowing heavily and I couldn't breathe for a few seconds which felt like minutes...I asked nurse to stay a bit to make sure I was ok...at some point my breath came back to me, but I still needed to order dinner and keep my eyes open long enough to eat it.   I had to wait for my enzymes after dinner got here and I am sure that I joined the sitting asleep crowd...there seemed to be hours of this but it could have been less.  I managed to get some food and water down before nurse poking and prodding began and then the inevitable night of no long sleeps..and now I Will give in to sleep once again.

Writing under  sedation so please excuse errors.
Goodnight,
Michelle

Tuesday.. I Think

Last night I sweat through my sheets three times...almost like when a fever breaks but I didn't have a fever...but it was marking the end of days of fevers. I was scheduled for a drain check at 1pm, but that got pushed back and finally rescheduled for Wednesday at 8am. I was quite bummed at that because drain 2 is showing similar stages as drain 1 that failed. I will have questions for them at the proceedure. In the afternoon I had some energy and finally got enough pain relief that the chest tube didn't dominate my thoughts. Had a nice visit with Aunt Debbie and Uncle Joe then tried to relax more. I picked up my water consumption which means more bedside commode assistance needed...because the chest tube has light suction and a wanky measure device (pic attached) I can't get far from bed unless it is a scheduled walk which I will do tomorrow...

I am supposed to get another chest xray to see how much fluid is left. I pray that the chest tube drains well today and then dries up.

Looking forward to seeing Mike & Melissa tomorrow morning. Thank you to all of you that sent encouragement cards!!

Going to get some rest, I will post more tomorrow.

Love and prayers going out to Chris & Kristen, Ramez & Heather, and Dylan & Carolyn. Praying for healing in your families.

Chest tube recovery

Today has been one heck of a whirlwind.  First I had to call my parents to get the medicine rundown of when I had Stevens Johnsons as an infant. The allergist wanted to evaluate as to see if they would give me an antibiotic that was a shorttail cousin of penicillin.  Just from the few notes she saw, she decided they shouldn't challenge the meds. 

Tube placement-it is somewhere near my armpit and maybe a little smaller than a nickel...way bigger than a dime...draining lots of fluid...but it weighs me down. 

Day in general...a blur of pain, not feeling human, and in and out sleep.

Please continue to pray!!

Prayer

I could really use some prayer this week...and especially that tomorrow will be the turning point! I am having a chest tube put in Monday morning and will have to stay in the hospital until that drain can come out. This is for fluid around my lungs.  Please pray that insertion is not complicated and that fluid begins to steadily drain out.  I also have two pancreatic drains...please pray that these continue to drain and stay functional.
Third is to pray that the fevers continue to decrease in frequency and level of severity. 

Thanks,
Michelle

Crazy Saturday

The pain trying to breathe never really subsided but was helped by meds. I had a chest x-ray this morning to see what was causing the pressure on my lungs and they noticed some fluid that they hoped could be drained off with a needle. My floor closes on the weekend so I was transferred to 9...this is the floor that keeps a consistent eye on vitals and the first place I came back in Sept. After I got settled, I was sent to Ultrasound guided thoracentesis??? Needle to suck out fluid...The radiologist was not sure from the ultrasound if her procedure would be successful so she wanted a chest CT...not long after I got back to my room, they called me for the CT....so x-ray, ultrasound, and a CT all in one day...oh, and a room change.  Fevers have been better but still low grade fevers...New antibiotics today and the thoracentesis tomorrow since the CT showed the fluid was not inside lung. I am in a single room again so that is nice! And hopefully I can transfer out of this floor tomorrow....hopefully coming home soon...but they keep saying once we figure out what is causing fever. 

Got to Skype again with Aaron...but it was bedtime and he was out shortly thereafter. Jacob just left to go back to Inn at Virginia Mason....connects right to the hospital!

I am praying that they find the correct meds for me and that the Thoracentesis relieves the pressure. I pray that these fevers stop! I am praying that my drains continue to be productive!!

Thankful for everyone that is praying for me..Keep them coming!

Friday

I am still fighting the battle with the fever...it is winning.  This means they are pumping me full of fluid...not quite the 30lbs I gained at Kadlec, but we are closing in on 10 lbs. They have me on 5 different antibiotics, some of which need to go into large veins. My veins are tiny and quickly being rendered useless as the IVs fail...I was on my fourth IV in just over three say.  The have been drawing blood from two locations any time I have a fever then another blood draw after the liter of saline and then there is the morning blood draw....they have used every possible areas on my hands and arms.  A doctor finally approved a PICC line that can reach the large vein that leads heart...I haven't been stuck one time since then...such a relief!!!  My Thursday night CT showed a body of fluid that will not be drained by Drain Tube 2 so they scheduled another proceedure to put in Drain Tube 3 (they took out Drain Tube 1 on Tues since it failed).  When I got to pre-op the doc mentioned that she'd be going through the diaphragm...eek! I came out of the surgery on quite a bit more pain and breathing difficulties...and then I was in and out the rest of the afternoon and evening.  It was another rough feverish night...more fluids, more pressure on lungs. Praying for a complete turn-around today.  We should have the cultures to a state that they can tell us which antibiotics can take out the infection. Gonna try to sleep now.

Who sleeps at night anyway??

For the third time this visit, an antibiotic destroyed my IV...so they had to pull it and then my skin was hot and irritated so IV therapy came and put in a new tiny IV and recommended a central line.  They also did a chest xray and gave me 12-15 shots around the prior IV site...was up most of night...finally put on some music and got a few minutes of sleep...then woke up in a cold sweat. I had another fever last night so that meant more blood draws. Just saw Dr...kinda argued with her because she is telling me things that is contrary to what Interventional Radiology has told me for the last two times I have come in...this is really frustrating different doctors, different understanding...and they don't sit and talk together.

Day 3 recap

Had a ct this evening and will have a procedure tomorrow to get a drain in a second fluid mass in hopes that it helps break the fever...hopefully the cultures that have been growing since Tuesday show them which antibiotics will zap the infection since the multitude of generals are doing the job...the Stevens Johnson allergies are limiting their options.

Got to Skype with Jacob and Aaron this evening...miss them so much! Aaron's 4th tooth is pushing through...so cute...can't wait for cheesy smiles! This weekend was supposed to be his first camping trip...disappointed but there will be plenty of trips later.

An episode of House

What is going on??  I feel like I am in an episode of House...I have a team of Hospitalists (intern, resident, attending), Gastro Docs, waiting for a consultation with an Infectious Disease doc.  I have blood draws from two different sites whenever I spike a fever, and depending on results, the I get two large bags of fluid and/or two or three bags of antibiotics. Then I have the daily wake up blood draw...literally I do not know how many more sites they can find. Feel ok...but they are worried because they are pumping me full of antibiotics and still getting fevers...they see a body of fluid that the current drain won't get to so they may put in a second drain...I laugh at what it will look like.. but whatever causes the fevers to subside and the infection to get under control. I have been so cold in my room...even without a fever...I asked where the thermostat was set and I was told it was off...yikes! I have been freezing for no reason for three days...

I am going to try to get some rest.

Extended stay

The docs came in this morning and let me know that they are keeping me until they get results from cultures....earliest release would be Friday.  I was up walking with my friend Lauren a bit ago and now settling down for lunch.  I feel pretty good right now but I am also on meds...amazing how I feel when I don't feel pain...we will see what I feel like in an hour or two. Glad I get to see blue sky today!  Please pray the infection has not spread into my blood. As of right now, all the cultures are negative but they will continue to monitor them. 

Something that has already made this stay better is my bed...it has adjustments that change the settings periodically and my back is not causing me problems.

I keep getting Aaron pics so I thought I would share! Aaron with his new buddy Caden. They are having so much fun together!!!

Hotel Hospital

I am done with procedures for the day...the old drain had come out of its prime location inside even though the outside was fine. They put in a whole new bigger tube in a complete different location. I am a little sore but it is managable.  Bad news...since it was late in the day, they didn't have enough hours left to watch me for sepsis so I got admitted to a room...luckily a single room!!!  I should be released tomorrow morning unless there are complicationa during the night.

Drain drain...

I have appts tomorrow afternoon at VM to check/change the drain...been experiencing pain and now the drain won't flush...the saline comes out the hole and I have periodic fevers. It could go a few different ways but hopefully they can replace the drain and send me on my way!! Hopefully there is no infection or problem in the fluid...drain checks are part of the normal process but this one came a week early...the drain pain is draining my energy...luckily I still have Joy and great family and friends.

Aaron

Thought I would post about our little guy! He brings so much joy to our lives and his  smile is so great...3 teeth and another starting to show!

He is on the verge of crawling...doing a few movements then diving for his toys. He has also started pulling himself up and can take quite a few steps if we hold his arms...he hauls around the house in his walking car.

He is such a great eater! We are feeding solid foods and bite size melt in your mouth snacks and MumMums

Headed home

By the time I saw nurse in ER, my fever had broke and pain was managed with meds. I got a bag of saline in me at warp speed and will follow up with VM Docs on Monday. Blood looked fine...pancreatic enzymes were normal yeah! I was definitely dehydrated. I am already taking an antibiotic so I just need to continue with that...and stay ahead of pain...thank you for the prayers!!

Back at ER

This week I have been getting used to the drain...localized pain, but the drain not having much output. This morning I woke up in extreme pain and then this afternoon I had a fever...so we went back to ER...hopefully bloodwork will show something easy and we can go home tonight...praying I don't have a medstar flight tonight...