Friday, March 14, 2014

When God Says Give a Kidney part 22: Running and World Kidney Day


Written yesterday on World Kidney Day ;-)


I'm just over 4 months post donation surgery.  I ran today. 1.5 miles. I'd given myself a few more weeks of rest and had to work through a mental block to start again.  I ran today after having a deep talk with myself and God and that today is KIDNEY day and I wanted to run for BLAKE! I didn't want to run...the last few times I just felt ick during and  the next days after and frankly was about to give up on this 5k/10k stuff.  BUT today, kidney day.  I ran. I felt GREAT!!!!!! I felt normal. I was surprised. This is the BEST I have felt running since the surgery.  I didn't expect it to go so well. I probably could of gone further but didn't want to press my luck.  So I walked another half a mile.


Our goal to 5k is on BLAKE!!!  Early May and I feel like I WILL do it! Even if I have to go slower than I did pre surgery, I will run that whole thing!  I will run for Blake, for our "shared" kidney for my remaining "Grace" kidney! I will run and within the year I will run 10k. That is my goal.  I will take it slow and remember my body is still healing...even  if up to a year post surgery. Some it just takes that long with energy and soreness. But I think I'm on a good roll now.  4-6 months to recoup after giving up an organ I'd say is really good!  And I'm super thankful I havn't had complications. I am anxious to see what my kidney numbers come to at my 6 mo appointment. I'm hoping Grace has stepped up her game and done a good job of taking over full control!


On World kidney day...I say drink lots of water, make sure you get your creatinine/bun/GFR tested and be an Organ donor on your DL.  Consider sharing your spare. I am so glad I did! 


Blake is still in hospital after his ureter repair surgery.  He is doing well despite some viruses that created some off WBC and high temp. He is peeing well!  I'm not sure on kidney numbers.  We have stayed away from the hospital this round since hubs was sick last week and we just don't want to chance spreading anything. I hate it.  If they are here, I want to be with them. I want to help with meals and support and hear the doctors and see that boy. I just want to see him doing ok. And I want to hug his mama. But most of all I want them home.  I have been praying so hard that this ureter issue is his last hump. That it was just what they needed to get things straightened out and Blake onto lasting healing.  I am so so so thankful that Praise Kidney keeps hanging in there and doing it's job.  It has been a warrior right along with Blake and his family.  Those parents and sibilings I tell you, they are amazing.  And on this World Kidney day I am thankful I got to know them and know this day even existed soley because God asked me to give my kidney.  All because God knew Blake needed mine. But maybe that I needed them.  <3 Love you kidney buddy!!!!



Monday, February 24, 2014

When God Says Give kidney:part 21: 3rd month mix post transplant/surgery

So so so much has gone on since I wrote the 2 month post update! It's almost  the 4th month!   I'm sure I'll miss some things... I know I should write more often but honestly at the time things happens sometimes I just don't know what to say.  Which is really odd since most of you know I am  completely a chatty Kathy!  So for sake of trying to keep this simple and not take too much time to reread and tweak and reread and tweak...yes I do that, I'm a horrible editor of my own work as I never ever ever feel it's perfect enough to hit the send button...So pardon any random errors, I'm just not going to spend time editing from now on!

Blake went home.  It was great!  And then he was back again with high white blood cells.  But only for an overnight! No cultures grew anything. We saw him around Valentine's day which is also National Organ Donor's Day and he gifted me with an adorable valentine!  Melt my heart.  It is now framed and in our living room next to the photo of Blake and I at our first time meeting. *Love*

Girls and I got to go to a Valentine's party with a group of new friends, which was very nice. It was great that we were able to make valentines boxes at the Children's museum the day before with recycled items.  We also made some really simple heart cut valentines to give out.  I love making holidays as least consumerism as I can...especially with so many little holidays thrown into a year!  Girls played in the snow and hubs brought us each a rose.  Smelled so good as I sooo want spring
NOW!  Hubs also brought us cupcakes for desert. 

Just this last Wed, on a whim, Jamie had asked if we wanted to meet for lunch before their clinic appointment.  I was thrilled!  We met at the mall and I got to see Blake first time OUT OF THE HOSPITAL since our 5k first race meeting before I even did the donor testing!!  Jamie had Blake and Bowen (the twins) and took Bowen potty. I instinctively asked if I could hold Blake for her or help Bowen so she didn't have to juggle it all (though she is a pro!) She asked Blake if I could hold him and he reached his arms out to me...in that moment I realized I'd NEVER held him! TEARS!!  I snuggled that boy and didn't let him go till after we got our food (funny it was I'm sure seeing me juggle a toddler on hip, my wallet and two kids and meals, I am NOT a pro!) Half way through us eating, he seemed he wanted down and I asked if he could...He hopped off my lap and WALKED over to mama.  WALKED!!! I was so shocked! I knew he had been, but I hadn't seen it and I was floored at how well he did! My heart just so needed to see him that way.  To snuggle him, to tear up when he laid his head on my chest. To see him playing with my girls and Bowen out of that hospital. They road the Carousal and that smile on that little Blake. Oh really people I can't put into words that day. I just can't! My heart could of BURST from it all. I was on a high for days after.

And then sadly Friday came...and some numbers started back up... surprisingly white blood cell was ok, it was the creatinine. But the worst was he stopped peeing. They ended up being admitted again and so Sat morning I brought Jamie food and hung out with just Jamie, Blake and I all morning. He looked so good and was smiley and happy...those darn numbers and that pee just wasn't working right. Originally they had thought it was from lowing the steroid dosage but after deciding to put in the nephrostomy tube to see if the kidney would drain, they found that his ureter was COMPLETLY blocked.  He has had a TON of urine come out that neph tube since surgery yesterday!!!  If they had not found this out, the kidney would of been damaged.  Praise the LORD that they figured that out!!!!  That ureter is still blocked so they will have to decide what to do with that. So prayers for those decisions!!!  BUT numbers are doing sooooo good now!!! Amazing how it's dropped in just a day and that pee...oh I can't wait to see it when we go visit. I never thought I'd LOVE pee so much!!

Praise kidney and Blakers are hanging in there...as are Jamie, Aaron, and the rest of the Burdorf clan... Let's keep praying for healing and praying them home. Together as a family has shown the best place for Blakers to really heal. His numbers dropped, his weight did too and he gained strength to walk at home. Thank God that hospital and docs are there when they need them, but we all know what home does for the spirit <3

As for me...it is almost 4 months post donation surgery.  I feel like things are evening out more! I had some more random pains this last month and really bad menstrual cycles.  I am hoping I am over that hump. I started running again! YAY! I am running 1 mile, walking 1 mile but able to up my running speed some more than I was pre-donation! I have been able to do at least every other day running. so I am now officially back at training for a 5k!!  I was going to do c25k again, but honestly it's too hard mentally as I already was at that 5k mark...I know I can do it, and just want to RUN! So I'm going to create my own increase on miles and just see how it goes.  Early May is the 5k I'm signing up for! I'll post more info about it later. I also don't feel as tired as I used to and am sleeping better some.  For some reason I havn't slept great since donation...I do know part is when Blake is in hospital I think at night, a lot...I LOVE when they are home! I ride this with them...and no matter what am so so so ridiculously  thankful my kidney is in that little boy! AND STILL GOING STRONG!!!!!!


God is soo good! 

(I have more pics but they won't upload today, darn. So be on lookout for a photo dump post soon!)
 
***READ the entire donor journey by clicking on the "Kidney Donor Story "tab above the blog post***







 
 

Tuesday, January 21, 2014

When God Says Give a Kidney: Part 20: 2 month donor-versary and Blake was HOME!

I just want to say thanks for following along with all my kidney donor/recipient updates here,  on Facebook, and in text!! It has been a HUGE part of my life and I'm just so thankful for all the prayers and comments and asking for updates we have received for both Blake and I. Each one is held dear in my heart. <3


Blakers went HOME! (well that was the case when I originally wrote this, I altered this to update it more)! After 39 days in the hospital and that doesn't even count the 21 days post transplant. Whoa, this boy and his parents have been through ALOT to say the least.   It was quite a whirlwind last few weeks. Blake was doing better, getting off all tubes and such kidney numbers good ect...and then last week just a few days before they were to be sent home, his kidney numbers went up and he wasn't peeing much at all. They thought possible rejection. Jamie called me at 4am that they were headed to  PICU, my spirit felt it'd be ok, my heart hurt.  They finally realized it wasn't rejection but an issue with some meds/levels and got that straightend out. Praise kidney did well through it all and started making pee again!! Thank GOD there was no kidney rejection. I was holding my heart through all that!


 Kidney numbers are better but still need prayers for continued lowering.  And that BP to remain stable.  BUT he was home!   Most tubes and such are gone. He has continueous IV nutrition and a port for his meds and blood draws and I believe only one drain (not the kidney one, which was removed YAY!) He has his feeding tube (that he's had since a baby) and now a permanent catheter (which he is only hooked up to drain). To me his incisions looked like they were healing well! That boy has quite the scar for remembering what he OVERCAME!!!  I might be missing something in there...but that's what I see from the donor perspective ;-)  He is back in the hospital now due to off WBC numbers...they are stabilizing out but still no answers.


We got to play with him last week  and last night and oh how nice that was!  He was sitting up and giggling and talking.  Our girls playing with him just melted my heart! 


Speaking of, I wanted to say how AMAZING my family has been through all this!  This kidney donation was a family effort. The girls sacrificed too. They spent a lot more time at the hospital than I think they'd like but they were such troopers!  I'm so proud of how much they care about Blake and his family and all the prayers they say on their own for him and asking details daily.  I truly believe this has and will impact them, their compassion and giving and thankful grateful hearts for being healthy and being together. A blessing.


And my husband...how he gives just is so inspiring.  He was all in in this from the day we decided we would.  His heart has been through the roller coaster with me. I mean when your wife is all consumed in something so big it has impact on you.  He not only did those household duties, worked and helped me through the healing (physically and emotionally) but he also visited Blake every chance he could when at hospital for work and brought Jamie coffee (he knows her fav by heart now) and whatever else he could do.  He was understanding when all I could talk or think about was Blake's healing.  He was so supportive when I'd want to drop everything and just go see them at the hospital. And  understanding that helping costs money; food, gifts, gas, time off during surgery weeks, parking, ornament supplies... it didn't matter!   Even offered to drive them 2hours home if they needed it once Blake was discharged and made all those #keepfightingblake ornaments by hand. Something he had never done before!  I just am in awe of how much he loves. I am truly truly blessed.


And I cannot thank our Church family enough! When your whole church prays fervently and unexpectedly during service for a little boy they don't even know, but is so dear to your heart...and when the worship leader speaks of his daughter who has been praying fervently for Blake and that her tiny pebble makes a huge ripple...you know you've found the spirit of God alive and strong in His people.

Last week was our 2 month kidney/donor- versary.  With all the commotion at hospital we just plum forgot it!  I am healing well. The transplant coordinator called me at 6 weeks to just checkup.  I am doing well by their standards too. I finished up the weekly phone calls from the donor study and will fill out my 6 month survey.  I am glad to be apart of something that will help other donors!  The gentleman who called me every week had said that the "tired" part is usually done with by 6 months.  he has done so many studies and that is usually the symptom that lasts the longest.  I'd say I don't really have pain anymore.  On a rare occasion I feel a sharp pain out of the blue.  But it really is rare now, few weeks back that was more frequent.  I'm really not so achy anymore either, occasional on my right side.  I do feel better if I walk on the treadmill for at least 30 min...but I don't always do that, honestly I just want to run again, and did run my first mile, which went well.  The bouncing last time I had tried really affected inside underneath my incisions and I was achy for few weeks after that first trial run. I've been meaning to add that I am still numb below my belly button down to just below my scar.  I sort of feel like it's going away very slowly.  I do know this could be something that is permanent.  Nerve damage is quite common.  It doesn't bother me, just feels different. My incisions look AMAZING!  So happy with them.  All but one are a thin line.  The one small one just above my belly button is more like a small tall rectangle, but healed well! I feel like everything inside has evened out.  I am drinking almost 3 liters of water a day and keeping my protein and salt levels down and no NSAIDs.  Urine output and bowels are good.  I don't go to be tested till 6 months. I do wish they did one sooner, I'd like to know what my creatinine, GFR, protein levels are, might just head to my general doctor and test those. OVERALL I am so so so very HAPPY and THANKFUL and PRAISING GOD for the physical part of being a donor. I would donate a kidney all over again if I could!!


Now onto emotions...such a spiritual high I was on during the process and surgery and recovery.  I just can't even explain how much closer to God I felt. I turned more to Him than anything else during all this time and I just am so thankful for the blessings I have received in my heart through it.


Roller Coaster emotions with Blake's healing have been tough.  I'm not going to lie.


*My disclaimer here is what I go through is NOTHING like the parents and family do...but I still, as the donor so deeply connected, feel this right along with them, not the same, yet still emotionally hard. Not all donor/recipients feel as Jamie and I do about donation, and that's ok for them.  To us, that "Praise" kidney is shared between Blake and I.  It's still my kidney and his. I don't just let it go because it's no longer in my body.  I don't just walk away from this because my job is done. I don't detach.   It is ongoing, our connection is forever. And even though the moments of traveling this with them have been hard on me and my family too (they feel the emotions of the mom) I wouldn't trade it.  I wouldn't separate myself from it.  I am all in and I am so thankful that is how Jamie sees it too. God meant for me to give my kidney to Blake and He is growing us all through it. For me, I cannot imagine missing the blessings that lay underneath it all.


There were moments I just was so dang mad at why he had to go through all this and why if it was just going to end like it was when things were really scary twice...almost loosing his life, and then thinking kidney was in rejection.  I'd like to say I remained peaceful and hopeful through every moment of it. But wow, some moments I just lost it. I cried, I prayed, I yelled at God, I was so stinkin sad and couldn't think of anything else.  I felt heavy hearted and just plain blah...sometimes numb. Underneath it all though, I had faith. It was always there.  I held that Jesus was in control and I did believe this kidney donation was for a reason...no matter what.  Underneath it all I still felt that sliver of peace that the kidney would make it and Blake would heal, that is what would snap me out of those heavy moments.  I'd like to say I continued on with normal life through it,  and while I did do daily things I needed, I was consumed in all things Blake. I was always in that hospital room with them even though physically all but my left kidney were home.  I pray so so much for that little boy. I take time to write FB, Blog and text messages with updates and for prayer.  I was in my bible more than ever before. I visited them as much as I could... bonus I am no longer nervous finding my way in that hospital, nor driving downtown. And then sometimes I just sat there with my head in my hands and wondered what more I could do for them now. But I couldn't. I just had to let God. I was never concerned about the kidney and my place in it though, I did so many tests and they made sure we were a good match and so far that kidney has done it's hardest to stay working through it all! I also know that I'm not tied to how that kidney functions in Blake, I can't control that nor do I feel I need to, that is God's hands. I am tied to Blake and his whole family. That just happened naturally and I'm thankful for it.  I just want that little boy home and healing!


BUT he was home and will be again.   He still has a lot going on medically. I believe Jamie said they are up to 17 meds! WOW!  And that IV  went home with them as I said. And some numbers are still off some days.   He still needs all those prayers.  BUT he will be home again and the real, good, long standing healing can begin...


For those who wonder about our "normal" family life... We have been homeschooling daily, crafting and keeping up on housework. We have been home alot, rarely a playdate  and you know I'm accepting it (some days).  We will get more involved in a few homeschool groups closer to us once Spring hits. I am trying to be motivated to walk daily, but I just want to run more, yeah call me crazy!  Girls love their new drawing/paint kits and Kay her embroidery they were gifted for Christmas. And I'm working on a new fun knitting project. We have been watching some fun movies, Anne of Green Gables, Little Women, Black Beauty (original) and our usual favs Sound of Music and My Fair Lady. I love that they love the movies I do!  Girls started dance class this week. Kay is trying a new one (same teacher as Samiha's last fall) in the city closer to us and we hope it's a good fit! Hubs is busy busy at work and we finally made a decision to get a new car since mine was just needing too much work for it's age!  It's nice to have that decision done!  Cats and chickens survived the cold! I'm still ready for spring ;-)

Tuesday, December 31, 2013

When God Says Give a Kidney: Part 19: BEST Roller Coaster Ride of 2013

2013 took me on an emotional roller coaster ride...but that kidney donation journey was the BEST one I've EVER been on. THANK YOU GOD for using me and my family, whom I couldn't of done this without (so deeply in love my hubs and our 2 girlies!) .
 
And Oh Lord so very thankful Blake is HERE and that kidney is working for him and that I met that AMAZING Burdorf family. I almost don't want to let 2013 ...go except that it was a tough end of the year for Blakers. Yes full of miracles and blessings (Thank you JESUS!) but I pray that his 2014 is blown away with amazing blessings of normal boring everyday moments at home with his family!!
 
And I pray that I learn to really truly love living out here on these 3 country acres. I still miss old town. This last year being crazy exciting for me, to say the least, helped that missing. So knowing how God just threw this kidney donation in my path without my single thought of it the years before, I can't even imagine what he has in store for the next years to come!
 
I do know that I learned giving is WAY WAY better than receiving and I don't want a comfortable life anymore, I want a crazy wild bumpy ride doing what God asks our family to do no matter how crazy it seems, because that is where your heart becomes SO full of the Holy Spirit that you really think it's going to BURST. Jesus you are sufficient in all things. ALL THINGS!
 
  Happy New Year!

" For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

" And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God." Hebrews12:1-2
 

Thursday, December 26, 2013

When God Says Give a Kidney: Part 18: Details of Surgery day, Hospital Stay & Recovery at Home.

A lot of detail in this one...seemed best just to write it all out at once. I wrote a lot of details for my memory and for future donors. I'm just so thankful for this story God gave me!

Sunday (2 days before surgery day):  We went to church that morning and oh how wonderful it was that they had our whole family up on the alter and people came up and laid hands on us and prayed. The prayer photo of Blake and I were on the screen and I have never felt so loved. I really do love our church family!  And then the story of the man who gave us the exact amount of cash we were going to take out of the bank to give to our girls caregivers...yeah I had to say that one again. God is so amazing! So we grabbed lunch and headed out to old town to take our girls there for a WHOLE week!!! I have never been away from the girls and that was a tough decision. But it was one of the BEST ones we made.  They went to my best friend's home, who also has kids who are our girls best friends. They also homeschool their children and I knew they would pray with the girls too.  Girls didn't cry...I was for sure Samiha (4) would have a hard time. NOPE she was so excited to be with her friends they miss so much since we moved.  Same with Kay.  They gave quick hugs and kisses and were off playing. I know that was good it went that way but I saved my tears for the car ride home.  I wanted to tell them so much (you just never know what can happen) but I let it go.  God had them and I knew they were in such good hands. On our way home hubs and I stopped for a dinner date in the city, I ate well as I'd be fasting that evening starting at 8pm.

Morning before surgery day: I started only water fasting before at 8pm night before, then I had a few moments between tests to quickly eat (I loaded up on protein with protien bar, sunflowerseed mix, and hardboiled egg) before I started the clear liquid fasting that lasted until midnight which then turned to nothing by mouth (not even water) till after surgery.

 I arrived at hospital around 9am. Checked in, waited maybe 10 minutes before being called back. I asked if they needed urine, she wasn't sure as that wasn't normally done, but due to my "non uti" issue. After trying to call someone and find out, she finally told me to go ahead and do a sample just incase they want it. Much to my relief! She took not as many viles of blood as I thought they would. Also took sample to blood match incase I needed a transfusion during surgery, just precaution.  Did Blood pressure, temp, normal vitals ect. Asked questions about my recent health and any vitamins medications I was on and when I stopped them (which I stopped all vitamins 10 days before surgery just to be safe, and was off antibiotics for the “non uti” 3 days prior to surgery). 

Donor Coordinator came in and was concerned about the urine culture, as (sorry for the TMI, but I want other donors to know what can come up) I had my menstrual, yup great timing, so a regular sample wouldn't work as it would show blood in the urine which would flag it as possible bacterial issue. She said they may have to do catheter to get a clear sample.  I was so frustrated...as I DID NOT have a UTI the whole time!  I know they are cautious, but it just seemed so unnecessary and I was freaking out as Blake was being admitted into the hospital and getting his labs done right at that moment. I took a breath and remembered last time, just chose to ignore it and wait for surgeons input...God had pulled us this far I really didn't think it'd stop now. My surgeon and the other surgeon were both in surgery so could not make the call if I needed to have urine checked.  FINALLY the head nephrologist said it was not needed and we were officially CLEARED for surgery.  DONE DEAL nothing else was getting in the way! SATAN was done...God's plan prevailed!!! I was so so so so so relieved, I cannot even tell you.

 We were able to go see Blake and his parents for a bit after my appointments.  Then hubs and I went to his office so he could wrap some things up and I did FB and wrote this blog post: Day Before Surgery.  It was so very odd being out and about without my girls.  I just don't ever do that.  We ended up late afternoon back at the hospital to visit with Blake and his parents some more and then to the chiropractor as I was so sore from the stress of the morning. My chiropractor stayed late after hours to adjust me, do some energy work and just talk me through all the junk of that morning and did so for free! I am so blessed to know someone who uses their God given gifts to help others! And that she gifted me with something that cannot be measured the day before the surgery. I left there so at peace and relaxed. AND I did pretty well without eating all day, although some jello (yup I was allowed that so long as it wasn't red!) and chicken broth helped. I forced hubs to eat a quick supper, I mean I wasn't going to starve the poor guy just because I couldn't eat! We went home, packed and snuggled up to a movie before I took my shower with the special wash they gave me to prep for surgery...that stuff was gross and felt all chemically and I'd rather not use it ever again.

Morning of Surgery: I did actually sleep that night which was a blessing!  I woke early and took another gross shower with the chemical stuff that's supposed to prevent infections and bacteria in the OR...couldn't use any products on my hair, so blew dry it flat, which felt odd.  And no perfume, makeup or deodorant. Though thankfully I could brush my teeth.  I was packed the night before so not much to get ready thankfully. We left and I felt really good. Excited and happy. No nerves, which I thought was so odd as I get so nervous about things like running the powerpoint at church, or speaking in front of people, or the all day testing day...this I was so at peace about. It was God alone. We drove in 20 minutes to hospital and checked in at the surgery department. They gave us a beeper and we waited for maybe 10 minutes.  I was looking for Blake and his family till I realized that duh, they were admitted so would leave for surgery straight from pediatric room. My mom and step dad were on their way.

 We were taken to pre op where I gowned up and wore the lovely footies and hat and thankfully they let me keep on their lovely panties and my menstrual pad for comfort. I wondered how that would work in surgery, she just said no biggie the nurses will take care of it. I decided not to worry about it though I felt uncomfortable. I came out of surgery with no panties on and a big tux type pad under me as I had the catheter put in during surgery too (for those women donors who like to know these things before surgery). Hubs and I waited in that room for a while I don’t even remember the time frame.  We watched some tv and chatted. My mom and step dad came in and chatted a bit. They both had their Team KIDney shirts on! As did  my hubs and that’s what I wore in too. There is a photo of hubs and I in our shirts somewhere I need to find that!  Mom and Mark gave their hugs and left when the doctors started coming in to mark me and explain the surgery a bit.  It was pretty brief and honestly I didn’t care. It was one of the first times in my life I was just going to trust the surgeons knew what they were doing. I couldn’t change anything and I couldn’t research anything anymore, actually I stopped researching a while ago, I just had to trust that God would take care of it all and those surgeons knew what they were doing.  THAT is not the norm for me, I don’t generally trust medical field and am usually on guard.  This was all God’s peace in me. It’s the only way I can explain how at ease I felt.

They put in an IV, had to try twice and I thought of Teddy and Blake who had so many pokes when they couldn’t get IVs in. Though I tell you the anesthesiologist is a lot gentler than nurses, it really didn’t hurt too bad. Once in she started a drowsy med so I would feel at ease heading into the OR.  AND boy did I!  I didn’t have a care in the world. I gave hubs a kiss and we parted ways.  It was so crazy as right when 8am hit beds were flying out of their rooms and headed to the OR rooms. I was in a line of maybe 10 other beds once we hit the OR section and then was wheeled into OR. It was such a strange room. So sterile looking and yet looked like someone moved in and didn’t unpack. So many things stacked up all over and on tables. And so many nurses moving around doing stuff, I think I might of counted 8 and that didn’t even count the surgeon and all the fellows (being it’s a teaching hospital) that would be in the surgery. I chatted with a nurse some, I think somehow we mentioned homeschooling and she thought that was so great…and then I remember nothing.  It’s so weird as I thought they’d count me down, or tell me what was going on or something…but I was just asleep!

Pre-op

Post surgery: I woke up 8 hours later in the recovery room. It surly didn’t seem that long! The actual surgery was 6 hours.  I was so drowsy and nauseous. I remember asking for my husband and they said no. I thought I’d be mad if they did, but I wasn’t. I was too out of it to be mad. I told them about my nausea and they must of done something cause it helped some. I heard the nurse next to me on the phone telling orders about me coming up. I couldn’t believe after only a few mintues in recovery I was going up to my room…few minutes HA! To me, in reality hubs said it was 2 hours. So I have no idea if I was partial awake during those 2 hours or if I was asleep until I when I actually remember being awake. It really is such an odd feeling that you have 8 hours that you can’t remember. 8 hours where stuff happened to you and you don’t know any details of it.  8 hours where people talked around you and about you and you didn’t hear a thing.  And that you really don’t get to know.  But God took care of me through it and that’s all that matters.

I remember being wheeled out of recovery, and up to my room. I was thankful to have been so drowsy not to really feel the bumps through it all. Once in my room I really only remember them telling me I would have to get into the bed, but no worries they would do the work for me.  And they did, fast and easy. All I had to do was be rolled to the right side and they slid me into bed.  I had oxygen in my nose, an IV in each hand, only one was hooked up to IV pole with fluids, catheter in, bandage on my lower incision, warm blankets and heat packs on my back and my sides (I used heat packs like crazy the whole stay),  morphine pump and also I believe the blood pressure cuff.

I thought my husband was in the room right when they brought me in, however he said he asked them and they said they needed time to get me settled.  He insisted again, and they said no.  He told me he thought I would be so ticked off because I had told him I wanted him in recovery right away if possible and I really wanted him in my room immediately no matter what. I think he said it was 15 minutes before he came in. And well I had no idea, so no reason to be ticked. Although really if it’s the patients pre wish for that they should let the spouse in. There really is no excuse good enough for me not to. It’s my care, I am in charge…I wouldn’t ask him to be in surgery of course, and yes I kind of understand recovery as there is no privacy…but in the room. Just no excuse. Ok remembering I was oblivious and not upset at the moment, so off my soapbox.

Hubs gave me a kiss and I asked about Blake, he said he’d heard the kidney was in and working. We both cried. It was an awesome moment. My mom and Mark came in for what felt like just a few minutes and gave hugs and left. Mom snapped a photo that I had no idea she took.  I don’t remember much else that night. Some moaning, some pain, pushing the pain button a few times here and there but not as often as I could of, needing hot packs on my lower back, getting the oxygen taken off, and being really nauseated. They gave me alcohol swabs to smell to help with nausea and I was apparently sniffin 'em like glue!  I switched to my peppermint essential oil I had in my purse once I was with it to ask hubs to get it. 


moms snapped photo of me just out of recovery

Blake still in Surgery:  And then I remember what could have been an anxiety moment for me but wasn’t due to being so doped up on meds, but was a scary moment for Blake. Two of Blake’s family’s friends came in to tell us the news.  The kidney apparently had an artery damaged and when the pediatric surgeon got the kidney it started working right away but then stopped and blood clotted. It started acting like a deceased donor kidney after they repaired the artery and hooked it back up.  It just wasn’t kicking in like it did the first round when they said all was good. This made Blake’s surgery go from a 10 hour surgery to a 14 hour surgery.  His parents were not really aware of all that was going on and was going to come visit us when Blake was out but sent their friends instead as they had no idea when he would be out. I cannot imagine all that. The surgeons were able to see the kidney making pee while they worked on the bladder (which also took longer than they expected) so that was good sign, but they wouldn’t know if all was well till an ultrasound after the surgery apparently.  (DISCLAIMER! I might be getting some of this off as this was obviously all told to me by a variety of people)

I’m not sure when I finally heard Blake was out of surgery and recovery and the kidney was working well but it was!! Honestly I’m glad I wasn’t really aware of what was happening. I would of panicked. I saw the tears and heart break of the two gals who told us the issues. Yet I still just felt all would be ok. I just didn’t get upset or have concerns. I just slept through all that. Another of God’s blessings.

Hubs said our surgeon came in the night of surgery and said everything went good for me. I remember seeing him wearing his coat as he was headed out but I don’t remember a thing he said or if I even talked to him.

First night post surgery: I woke up at maybe 3am and was so dang nauseous. Hubs called the nurse and I was so afraid to throw up.  But I did. And it did suck. A LOT. It was so painful. However, the nausea went away and that helped a lot. Hubs and I think at this point I walked for first time, since I was already sitting up on the edge of the bed. (Yes no sleep for the spouse, means foggy memory too!)  I walked out to the first nurses station and back. I hated it with the catheter and it was really really hard, and painful, I did not plan to do it again anytime soon! I must have been off the morphine pump then as I don’t think they let you walk with that. They changed my meds and added anti nausea meds a few times to get my nausea under control. To be honest I didn’t care what they gave me, I did ask a few times just to be sure it wasn’t NSAID as I can never have those again. But I really just trusted them, again a first for me.  It was so much easier for me than birth, as I didn’t feel the need to protect and know every detail and be on guard. I wasn’t breastfeeding, or had a baby in my body…it was JUST me so I took what I needed and moved on.  It was nice.

 And we had such great nurses, not a single one the whole stay was bad. That really has helped me let go of the awful nurse I had at Samiha’s birth. I’m thankful for that!

Next time, surgery wise (no worries I will keep the other kidney!) , I will do the anti nausea patches before surgery and I will have ginger chews onhand ALL the time, those were lifesaver for me pregnancy and I wished I'd of thought of it!  Hubs did buy me some a few days later at home and I used them in the morning before I even got up to curb that nausea as well as a few crackers.

Day 1 Post surgery (wed): Cathetor came out that morning. I remember bracing myself as I'd never had that done before and it came out just fine, I didn't even feel it.  I was hesitant going to the bathroom first time but it also went well. (donors: I didn't have a bowl movment till maybe day 6/8 post surgery even with the stool softener taken daily.  I ended up taking aloe vera juice, prune juice and magniusm that helped a lot). We walked off and on and that was so nice without the catheter but still very painful. We didn't leave the wing we were on. I pretty sure I changed into regular comfy/loose jammie pants and top this day too. I did just a wipe down with the towletts and my norwex fact cloth this day as I wasn't ready for a shower even though I could of (no baths for 6weeks).  I believe Blake's parents visited this day, and all was well with Blake. I received beautiful flowers from our Worship Team at church...I cried! I didn't feel like doing much of anything so dozed off and on while chatting with hubs, my sister in law who visited, also our pastor and wife, and worship leader's family from church, ate some pudding (my food of choice in hospital) and did try a meal at some point that day but wasn't really interested.

worship team flowers

 


Blake's daddy sent this to me in text. I cried of course. My heart needed to see him!!
Day 2 Post Surgery (thurs): I wrote this post about the surgery: It is Finished!! Again more walking this time off our wing more, sleeping, chatting, watching movies on Ipad with hubs. I got updates many times about Blake. I did carry a small pillow over my abdomen walking, and my water and chapstick.  Thought maybe I'd go home this day, but had a very low grade fever (typical after surgery) and a urine test said possible bacteria. I  expected to get an actual UTI with the catheter or yeast from the antibiotics. BUT we found out next day it was actually due to contamination (and I never did get UTI nor Yeast! Praise God!).  I was ok staying one more night, I felt like I needed it.  I actually slept in the recliner chair most of the time in the hospital as it just felt more comfortable than the bed.  I switched back and forth and of course chose 3am to go walking...poor hubs!  I remember at one point I had the computer, was done and woke hubs to move it.  His response "Just toss it on the floor". I laughed and said I don't think so. His response "Oh it'll be ok." He did remove it for me safely. Hubs stayed with me the whole time, I couldn't of done it any other way...he was my rock, emotionally and physically. I'd never ever want to stay in hospital without that.

Day 3 Post Surgery Discharge Day! (Fri): I ate more this day. And it felt good. Nausea was all gone. I was ready to go home and be more comfortable.  We gathered our things together around lunch time and went up to see Blake the first time.  Was quite a walk but I was feeling pretty good. Pillow with me still. I was so glad to see him doing so well. His mama sat him up for first time and we got a picture. It was such a relief to see things were working as they should. Of course I cried.  We stayed maybe 20 min and then gathered our things and headed the 20 min  home. Car ride was ok, I kept that pillow between me and the seat.  I couldn't sleep but just closed my eyes some. I took a shower once home.  Kept my incisions away from the pounding water and was just so nice to feel clean and have the heat of the water on my back. Hubs helped me in and out of shower and getting dressed for probably first 6 days post surgery, till I didn't need it anymore. Love him!!!

walkin walkin

Day 4 First day home (Sat):   Friday night wasn't bad, I was glad to be home, but could NOT get comfortable at all. I tried bed, sofa, so many pillows tucked everywhere. Hubs decided to go out Sat morning and buy a recliner.  We had talked about getting one for years, hubs really wanted one but as an interior design student I couldn't see getting one unless fancy leather with nail heads!  I changed my tune and was all for it as I'd slept so well in hospital recliner.  Hubs went to the small town near us and did great and even randomly got an electric one so I could put it up and down myself with ease! I have to admit I love the thing and slept so much better!! We found out later Blakers got a lil cameo recliner for his post transplant gift.  Apparently give or receive a kidney and you get a recliner!!! ;-) 
Love this thing! Hubs did good!!


my mom gifted me slippers and a love mood ring. I love mood rings!
Sat we hung out, watched some movies, slept, it was really nice just to be.  We had some good food brought to us by church family and I was able to eat just small amounts. We had debated on when to bring our girls home and were glad we waited till Sunday, even though it was hard, I just wasn't ready.  And good thing as Saturday  night was not good. I woke up with major nausea and pain from  the nausea. I did the much dreaded throwing up and dry heaves. It was awful and I was actually scared not being in the hospital. We debated going to the emergency room, but instead I cried myself to sleep in hubs arms and 4 hours later we woke to morning and called the transplant team.

Day 5 Girls home (Sun): Transplant doc changed my meds to less stronger one that would not cause nausea.  We had dear friends pickup the prescription for me and bring us some non funny movies as we had to shut one off the day before because laughing hurt too much. I told my comedic hubs he had to tone it down too as good for the soul laughing is! 

Girls came home that afternoon and I was so so emotional. I cried everytime they came close to me.  So blessed my best friend brought the girls home so hubs didn't have to drive 4hrs that day, he was exhausted too! I was amazed she stopped at the mall and had lunch with 5 kids ranging age 2 to 8 on her own! They stayed a bit, and then headed back home. I was so glad to have those girls home, but so thankful for the amazing care they got...so much love and prayer and comfort and fun!!


Girls brought me flowers when our friend brought them home, yup, tears.


Early mornings in the new recliner and Colossians.

Snugglin with girlies in my new recliner (covered as new furniture fumes made me nauseous).

Photo Blake's mom texted of a smiley Blake, as I didn't make it up to see him for a while once I was home.


Second week of Recovery: Girls were so helpful and careful. It was nice to feel some normalcy. Though I did feel odd not seeing Blake. I waited a week I think before going back up to hospital.  We received hot meals daily from our church family. It was so great to not have to worry about that.! I can never say enough how our church helped us. So blessed! Hubs stayed home for another full week which was sooo needed! He worked from home as much as he could.  I honestly was so tired and sore, even though girls are 8 and 4 I still couldn't of done it without him.  I needed more time. The day hubs went back to work, a local best friend came down and brought so many freezer meals from my mommy group!  I was so so humbled and thankful! With some other meals from my ballet moms group too... we didn't have to cook for the whole 6 week recovery!!! Hubs was very thankful for that too, as he was working, doing all household chores, outdoor chores and taking care of us all.  I am so so blessed to have married him...that'll be another post...it deserves it's own!  \

This brings us up to date to that 10 Days Post Surgery post. And in that post it tells how Blakers had his first set of complications.  It broke my heart, but that little boy showed us his amazing fighting abilities and that kidney stayed strong through it all!!! There is that kidney working strong in Blake!

Ultrasound of Praise the kidney working strong in Blake

And stayed strong through the second set of complications here...he fought for his life this time but is now on his way to almost home, he is doing so well!! Praise GOD!!  And my 6 week post surgery update here.

 While I wished Id had written these in order and as it happened...life happens. I didn't feel like it at the time and then I just didn't want to take the time to write it all out the few weeks later.  My suggestion to your donors, is at very least write a daily journal paragraph somewhere, pen and paper just fine. Even if you don't feel like it.   Keep some sort of record so you can go back and recall how and when things happened easier.  It is such an amazing journey, you'll want to remember it and share it! 


When God Says Give a Kidney:
(2yo recipient Blake's family blog: Here)
Part 1: The Beginning
Part 2: A Crossmatch to 2yo Blake
Part 3: Meeting Blake's Parents and My Running Story
Part 4: An Emotional 5k and the Wait to Test Day
Part 5: Testing Day
Part 6: Donor Accepted!!!
Part 7: In Limbo of Surgery/Transplant Dates
Part 8: Transplant DATE, Recovery Info & Shirts!
Part 9: Prayers for Blake please!
Part 10: One Week to Transplant!
Part 11: Day Before Surgery & God's Reassurance
Part 12: It is Finished!!
Part 13: Photo Journey & 10 days post OP
Part 14: Praises Blake Goes Home!!!
Part 15: Pre Surgery Bumps in the Road

Part 16: Blake's Scariest Day Ever
Part 17: Blake GREAT news! My 6 week donor update!
Part 18: Details of Surgery day, Hospital Stay and Recovery at home

Tuesday, December 17, 2013

When God Says Give a Kidney: Part 17: Blake GREAT news! My 6 week donor update!



Doing the happy tears praising JESUS dance over here!!!!!!! I cannot wait to see Blakers today!!!! He opens his eyes now!!! I can't wait to see them! Blake I'm so so so proud of you!!!!! "Praise" the kidney your pretty darn amazing too!!!! (That's Praise up there in that ultrasound photo in Blakers-AMAZING!)

   UPDATE: Jamie (Blake's mom)  "BIG BLAKE CHANGES: Breathing tube out yesterday! Dialysis catheter out today! Arterial line also coming out today! Go Blakers Go!! I'm not excited about this progress at all. Haha." #keepfightingblake #builtblaketough


We are busy  making the #keepfightingblake fundraiser ornaments at our home.  Contact me at hebrews12two@hotmail.com if you want to order one: $10.  My husband is cutting them out of wood (he is amazing!!) and we are assembling the rest.  We have a good system down now and are selling these things like hotcakes!  All the  money goes to the Burdorf family to help with expenses that come with having a child in the hospital hours from your home.

How about a donor update? I know I've lacked in that. I do have my hospital stay all written out so will be publishing those in the next few days for you future donors!

I am 6 weeks post transplant and am doing well healing!  My scars look AMAZING I am so very happy with them.  I still get aches and soreness in my right side mostly but it isn't pain. Sometimes it is out of the blue, sometimes when I'm doing stuff.  I rarely take Tylenol anymore which is great!  I'm sure it's all just getting used to the new normal in there, you know with Praise the kidney doing it's work for Blakers now!  Grace the kidney has been stepping it up! She seems to handle it all well. I actually feel really great with how my body is working on one kidney. It almost seems like it's doing better on one than with two! Only by God's grace!!! 

Physically, I will be able to lift over 5 lbs now if I feel my body can.   I will still be tired for quite a while as some tend to feel this even 6mo to a year...but I don't need naps anymore, just rest breaks here and there through the day. I'm really happy with that progress too! Getting in and out of bed with ease is great, though still a pang of ache if I do so too fast in the middle of the night with a yelling child! I can also sleep on my tummy with my body pillow and that makes for a GREAT night sleep for me!! I am able to start running now.  JOY!!! I will be starting the C25k running program over again. Taking it slow as my body tells me. I hope to be able to get back up to 5k in 8 weeks and eventually to 10k!! I run for #keepfightingblake and #teamKIDneywarriors so gotta keep that going! Plus my body is a lot happier when I run.

Emotionally I am so good! I didn't obviously expect all this infection for my recipient and almost loosing Blake to happen, holy cow!! I had thought how would I handle if the kidney rejected and I figured I"d be really sad for a while.  BUT I never expected to know how to keep joy and peace through tragic times. I was blessed to have learned through Blake's parents, Jamie and Aaron. All along in this whole thing I had this peace God would keep Blake here, that kidney would still work. I also though, had moments of "what the heck God?" but they were brief because of how God worked through Jamie and Aaron. I just chose to be positive, keep praying (ALOT!) and trust God would make everything ok.  If it didn't end up joyful news as it is today...I would deal with it then. There was no room for 'doom and gloom' in this journey. It isn't good for anyone. And hope is an amazing thing! God can do anything at any moment!!

So life went on while I prayed, texted with them multiple times everyday, got over a brief cold (thank God), took care of my girls with their colds, and created the fundraiser. It was much different than how I've handled situations like this in the past...I also havn't been this close to it...to a child going through so much...to my kidney being part of it all...a piece of me.  I'm just sooo thankful that God brought this family into my life to teach me far more than I ever imagined. In addition to the unexplainable blessings I've had just by giving my kidney,  keeping joy and peace regardless of life circumstances will help me in life more than they will ever ever know.

Yes there is a time for mourning and sadness, but leave it till it's real and not "what if" and let it be brief , let the Lord fill you with HIS joy and peace no matter what...make the CHOICE to live in Christ a positive life...it is YOUR choice and with HIS help you can do it!!! His joy comes in the morning. Always.

Prayers for lil SuperCooper today please...the final Team KIDney Warriors trio is getting his kidney from his uncle!!  Teddy just came out of tonsillectomy surgery and is with his mama. Prayers for healing there too.  AND for a non team kidney kiddo...a friend's 3yo, Sarah, having hip surgery and full casting at the same hospital where our 3 Team KIDney Warriors are today. AND don't let go of those keep peeing and healing prayers for Blakers!!! The journey is still going.... God is Good all the time!!

When God Says Give a Kidney:
(2yo recipient Blake's family blog: Here)
Part 1: The Beginning
Part 2: A Crossmatch to 2yo Blake
Part 3: Meeting Blake's Parents and My Running Story
Part 4: An Emotional 5k and the Wait to Test Day
Part 5: Testing Day
Part 6: Donor Accepted!!!
Part 7: In Limbo of Surgery/Transplant Dates
Part 8: Transplant DATE, Recovery Info & Shirts!
Part 9: Prayers for Blake please!
Part 10: One Week to Transplant!
Part 11: Day Before Surgery & God's Reassurance
Part 12: It is Finished!!
Part 13: Photo Journey & 10 days post OP
Part 14: Praises Blake Goes Home!!!
Part 15: Pre Surgery Bumps in the Road

Part 16: Blake's Scariest Day Ever
Part 17: Blake GREAT news! My 6 week donor update!


Thursday, December 12, 2013

When God Says Give a Kidney: Part 16: Blake's scariest day ever

For those who don't know. We are 5 weeks post transplant and my 2yo recipient Blakers was doing so well till he had a bloodstream infection that turned septic really fast on Saturday. He is in picu, stable now, still fully sedated but improving slowly. Here is his mom's blog post on what happened.
Praise the kidney is hanging in there and not a big concern. Blake's life is way more important.  Dialysis was started to help it along from the trauma of Saturday. But they have no concerns it won't fully take over and work normally.
On my way to the hospital Saturday, things turned a good corner and he was still with us, warm bodied and color back. Was still very hard seeing him like that. They said he looked so much better than he did that morning. I held it together in the room but let it go to their family friend in the waiting room.  She was so comforting! After the transplant it'd been 3 days before I saw him, he was awake and this was much much different circumstances.
I don't think I have ever prayed so much in my life! But all along I just had this peace he would be fine. That we both didn't go through this transplant and connection for it all to be done.
After hearing from his mom things were very bad that morning, they might loose him.  I had texted her before I left home saying "Nope, it is not gonna happen, it's just not, keep faith." And even though I cried for few minutes while getting ready to leave for hospital and while praying for him with my girls, I just knew he would make it. Thanks only to God for that peace because normally I freak out in frantic overwhelming tears. God has plans for this little Blake. He has overcome so much and will continue!!
I have been up to hospital some and we are doing a fundraiser for their family. Please contact me if you want to order a #keepfightingblake Christmas/holiday ornament. Hubs and I are making them and with the help of many we will have a great amount to give them for hotel, gas, food, whatever on this long road to recovery.
Remember prayers are most needed. Pray for Blake's full healing. He is a fighter!! We believe in the power of prayer!!! Jesus is sufficient in all things!!!
Follow frequent updates on "When God Says Give a Kidney" fb page. Even if your not on fb you can view that public page.
Update on Blakes moms blog. Mostly progress. Join us Praying for pee again!!
 
Part 18: Details of Surgery day, Hospital Stay and Recovery at home