Two days, two hospitals...

My days of pain started Sunday night at the hotel at Virginia Mason...I felt pain in my lower right flank that we thought were muscle spasms...I couldn't lay flat or even get comfortable at any angle other than full sitting position...needless to say, I did not get much sleep.  We got up ans got down to the Ct scan and then we were sent to the other building for tube check. It is a long walk and I was tired when we got there...only to hear my proceedure would be done at the Buck Pavilion...exactly where we came from ...so we headed back over there...waited forever and then found out there was equipment that broke down and I would be heading back to Jones pavilion...this time they brought a wheelchair and a parking voucher for the inconvenience.  They were really behind and my 9am proceedure didn't get underway until almost 12:30...they switched where the two drains were positioned inside and sent me on my way...the whole day plagued by these spasms or whatever they are. I was in so much pain by the time we got home that I went straight to bed...it was another restless night with more pain and trouble breathing that I called the Doc and got right in this morning...after he poked around and listened to my lungs, he sent me for a Chest CT at ER...3.5 HRS later, I am still here...waiting...watching as cell battery dies. I will post again when I know something...

...and then there was 2

We were "fit" in this morning for a tube check and now we are on our way home.  We had gone to Seattle without an appt but I called as soon as I could and left a message that we had an urgent need to be seen today. They I'd get a call within two hours so we waited in our room...which is attached to hospital...I called the nurse at 8:15 to ask a few questions about clear liquids I could drink that morning.  She said she would talk to scheduler and they'd get back to me...got a call from nurse that they had opening and to head over. Within five minutes I get a call seeing if I wax going to check in today so I asked what time I had been scheduled...and she said 8:00...would have been nice for a callback since we were up and ready...waiting for the phone to ring.

We pack our stuff down and check into the correct area...no CT scan...just a thorough tube check.  After that the doc left for a bit to put together his plan...taking out front drain and reducing the size of the back two drains...may still have to deal with leakage since the new drains are smaller...a price to pay to be closer to having them out but not fun nonetheless. Now they will be easier to flush and we flush less each time and twice a day.  We will see how tomorrow goes...hopefully a step forward and not a lazy or painful day... 

Praise the Lord that Aunt Mickey and Uncle Jerry are flying home.  Please pray for safe travels and continued healing in his hip. Also pray that Aunt Mickey who is taking care of uncle Jer..may she rest on the plane and when they get home!!

Find Blessings this week...if you look enough, you will find them all around you!  Also, to the "moms" in my life...you are priceless and I can't put into words what you mean in Jacob, Aaron, and my lives!!! Happy Mother's day week!!!

Feeling good, but...

It has been a week and a half since the last drain check and feeling ok. I have been mobile a lot this week cleaning the shop...well for the most part I am sitting in the computer chair while Jacob does the dirty work...and thanks so much to the friends and family who helped with operation shop clean out!!

The doc switched the dose on my pain patch with the hopes that I can get off the oxycodone...don't know if that is what has been giving me more energy or if it has been the fresh air and a project?? I am beat at the end of the day but such a productive week.

Last night (Sat) one of the sutures holding one of the back drains pulled loose and now there is only tape holding it in place...I was worried and called the doc on call and we agreed I should come in (to VM in Seattle) to get it fixed.  She wasn't worried that any damage had been done yet...that is good, but waiting a week for my next appt scared me...what if I moved wrong or Aaron grabbed and pulled...I'd rather make an urgent trip rather than emergency. Another reason we thought it was good to go sooner rather than later was that this was the drain that has leaked through two dressings a day since we got home from getting it put in...it is hard to flush because of the extension piece needed to make it work...it has caused me the most pain (the suture was really tender...shooting pain when Jacob would change the dressing)...and it isn't draining a super amount of fluid...basically our problem child right now...

We are headed to Seattle even though we don't have an appt...the Doc knows we are coming and said they will "fit us in" Monday. She is the one that differentiated urgent from emergency...I am hoping for morning since I have to fast before procedure...but peace of mind is the main goal. Last time I had a problem, we called for an appt Monday first thing and didn't get in until Tuesday afternoon because of the pass being closed and involving a third party to make the appt...the scheduler in my gastro Drs office and I played phone tag all day. This time we will be at the hospital ready and waiting for an opening and will call the IR dept directly.

I will post again tomorrow after the procedure. Thank you for your thoughts and prayers!

Another good appt!

We had another decent visit at VM today. I would say great or one of best, but I did still have to be put out...IV took two pokes... and I still have drains protruding out if my body...and rely on pain meds... We were excited to hear that one of the areas has shrunk to one-third or one-quarter its last size!!! They still switched out the drain because they hope to pull more sludge in the actual process. I still came home with three drains, but none of the drains had clogged or stop working. Actually the last drain still comes out of me at the same place but is reaching a new fluid collection on the inside... Hoping that I feel good tomorrow and continue to improve my nutrition, energy, and strength!!
It is not a good thing that everyone knows me on a first name basis...the CT scan gal, the IR nurse and techs, etc...and they ask what Aaron is doing this week...

Our little Superman is eating more varieties and textures, pulls himself up on everything and most recently started singing the "dadadadadada" song. Jacob is waiting for Aaron to look at him and just say, "Dada".

Happy Easter! He Is Risen!!

Happy Easter from the Worthingtons

 

 

 Aaron enjoying some relaxing time at Church!

 

 

Better day, in perspective...

Found this draft blog post from a few days back...sorry for delay.  Today I have felt much better! Last week was a really bad week...and hopefully the rest of this week is as good as today or better...actually looking forward to dinner tonight...appetite better than last week.
BTW...I am home...my Tues appts finished and we were sent home same day!!

Up, Up, let's get the show on the road..

We had a good talk with multiple doctors today and we are going to try a few different things.  First with the drains, we went bigger...going smaller last week didn't move us in the right direction...treading water... They seem ok but let's see how I do sleeping and how tomorrow goes when meds are back to normal. I had another iron infusion with another planned next week...antibiotics may get switched up a bit too.  Feeling ok as I head to bed. Thanks for your thoughts and prayers!!!