Tuesday, September 22, 2009
Summary of Summer 2009
CONFERENCE GROUNDS 2009
We have a yearly tradition of going to the conference grounds and staying in the cottages (we had 4 this year) with all the aunts, cousins, and kids.
We ended up having so much fun that we decided to stay another week in our camper. Highlights always include: the candy store, swimming pool, bibleschool and the playground. We also bought a kite this year and the kids had so much fun taking turns flying it.
We watched a meteor shower, and had fun having a fashion show with new clothes from Grandma N! We LOVE camping!!
BEEN AWHILE! (END OF SUMMER)
Monday, July 13, 2009
Great news, no doctors for 6 months!
My surgeon called me a few weeks ago after my 4th upper scope with more banding of my veins in my esophagus and he told me that everything looked great! My veins were going down, some of them were gone, and the best news: I don't have to do a thing for 6 months. I almost don't even know what to think or feel, its just so crazy to go through all I have in 2 months with so many appointments, procedures....to nothing! Its all I have been thinking about, dreaming about, every waking moment, I wonder whats next......
Sunday, June 21, 2009
Thursday, June 18, 2009
Camping in Grand Haven June 2009
Tuesday, June 9, 2009
KIDS SAY THE CUTEST THINGS!!!!
Karlie: We can do it just like Dad does, put it on our hitch. Oh thats right, bikes don't have hitches. (6/8/09,3 years old)
Mom: I wasn't at the memorial parade with you because I was sick.
Karlie: oh ya, thats right, you were getting new veins in your throat with rubber bands.
(after that statement we had a LONG discussion about Dr.'s and putting mommy to sleep with medicine so nothing hurt, and how did the Dr go down my throat? How did you get the Dr out?)
(6/8/09,3 years old)
Mom: Dad was with mommy in the hospital
Karlie: Was he getting fixed too?
Mom: No, he just stayed with mommy to hold my hand
Karlie: And to give you lots of kisses?
Mom: yes
Karlie: Awe, You should tell him Thank you! That was so nice. (she was so happy!)(3 years old)
to be continued.....
Mom: Great Grandma is going to go to heaven soon, we need to ask Jesus to take her
Karlie: Do we all get to go to the same one?
Mom: Yes
Karlie: Oh yeah, I am so excited to go there, I want grandma to be there, mommy.....I love you mommy, do you want a bear hug?
Mom: Karlie, your gonna be a cool dirtbiking chick! (she just got her new PW 50)
Karlie: Mom, chickens don't ride dirtbikes!!! She thought that was so funny that I would say that, and I thought she was so funny, but she didn't know why obviously. Super funny! (1-6-2010, Karlie 4 years old)
Mom: Karlie, I really don't want you to do my hair, I just did it and I don't want to do it again.
Karlie: But mom, its just alittle makeover and everyone likes those! (April 2010, 4 years old) I have no idea where they come up with such things!!!!!
So my son came up to me this morning with his PJ's unzipped. Thats wierd I thought, until he said "shot" and looked at me, in his hand was a fake srynge from a toy Dr's kit and he gave himself the "shot" in his stomach and smiled at me. It was so sweet! Just like he sees mom do it everyday! He is so smart! (April 9,2010, 2 years old)
Karlie (5): Mom luke just burped and something came out of his mouth!!!"
(I come and look, luke threw up all over the couch! Not going to bible study this morning!:)
Karlie: I looked at him mom and it almost made ME throw up!
Luke and I laying in bed (almost 4 years old) "I'm not afraid of the dark mom"
Me: "your not!!?"
Luke: "nope, Jesus keeps me safe"
A different night laying in bed (Luke was crabby and wouldn't go to sleep)
Me: "boy, you sure are crabby, who did you come from?"
Luke: "jesus"
Me: "your right, you DID come from Jesus"
Luke: "ya, b/c I don't want satan in my heart"
Me: "thats right buddy, you don't. And someday Jesus is going to come again and satan and him will have a fight and do you know who will win?"
Luke: "jesus"
Me: "yup!"
Luke: "YYYYYEEESSSS!!! and gets all excited flipping around"
Luke and I were driving to school to drop something off to Karlie and listening to WCSG, the announcer says, and that was Jeremy Camp
Luke: "MOM!!! Did you hear what he said?!!!!
Me: "Yes...???"
Luke: "HE said Jeremy camp!!!"
Me: "ya???" (not having a clue where this was going)
Luke: "That means we are going to go camping soon with Jeremy!!!" (alittle friend he met last summer at Holland state park while camping. :) TOoo cute!! He was soooo excited!!!
Luke and I were taking a bath (dec. 2011, almost 4)
Luke: Why does your stomach look like that mom?
Me: oh, b/c mommy had a big surgery and from my shots everyday (its black and blue)
Luke: thats gross!
Same day, I went shopping for Karlie (6)
Me: I bought you some new underwear b/c yours is getting too small
Karlie: There NOT as big as yours are they!!!!???
Me: I just don't want time to go fast and I wish we could stay right where we are forever!!! I want you to stay my little buddy!!
Luke: "Do you want me to stop eating?" (June 3, 2012, 4 years)
Luke, Karlie and I were camping at the conference grounds this week and Luke came running up to me and said "Are you not sooo happy that I found this new friend mom?" He was so proud to make a new friend at the playground. It was so cute!
Karlie continues to say "come on Bro, come to big sissy" (aug. 2012) oh my
Monday, June 8, 2009
Trying to move on with Life
I don't know if I am done with "stuff"....I wish I was. I feel pain in my chest every now and then and start to worry, wondering if its normal. Sometimes I lay in bed wondering if I am going to die. Will I live to see my 40th? 50th? My kids get married? Only the good Lord knows. Sometimes I struggle with the thought of death and I am afraid of it, I will admit that I am weak when it comes to the idea of leaving this earth behind, my family. Even though I KNOW I am going to such a better place! I know that no one knows when our time on this earth is done, but it gives me fear....I don't want to die. I tell you what, I sure think about the saying a whole lot more "live each day as if it were your last!" I have changed and I am glad. This has all made me such a better person. I can't even begin to describe it but I have so many feelings and so many thoughts running around, things I want to do, people to see, just living and enjoying LIFE!
I have another banding procedure in a week, I cancelled it and pushed it off a few days b/c I just don't want to go! I don't want to do anything else.....But I know I have to. Maybe he will be happy with what he sees. Maybe I won't have to have these "veins" wrapped anymore. That would be so nice!
My kids are awesome. Sometimes Steve comes home and asks me why I go everywhere and do so much with them? Why not? I want them to experience life, I want to explore, see the world through their eyes, be together, and enjoy every moment I have with my kids! I don't care if we are home or away, I just can't get enough of them. God made me a mom and for that I feel so blessed!
Monday, June 1, 2009
Letter of Thanks to so many!!!
I cannot tell you enough how grateful and blessed I am because of you all! What I have been through over the past 2 weeks has been unexplainable in so many ways, and has changed my life forever. I am home, I have returned to being a wife and mother, and tonight I am soooo tired! :) I am trying to take it slow but I think most of you know that is impossible for me, plus, I have 2 little ones that run more than I do!
It feels great to be home and I feel so blessed to have my army of warriors out there praying for me! It worked and God does answer prayers b/c I am proof of it! The Dr.'s were all amazed at the last CT scan and are amazed at how great things looked. The surgeon told me when we were leaving that I am lucky. I think I have a better word for that and it is all b/c of you! I couldn't have made it without all of you praying for me, for holding me up when I was at my lowest, and honestly, I didn't know if I would be seeing anyone again.
Am I "fixed"? No. Do I have something wrong with me? Yes. Am I on my blood pressure meds, blood thinner injections, and more? Yes. But the big hurdle is out of the way and hopefully over time, my body will return to normal. I have a year of tests and lots of blood work, but hopefully with close monitoring, I won't have to have any more surgeries.
Words cannot explain how much I felt your arms around me and the love of the Lord through all of you. It is something that I have never felt so strongly before. Last thursday night something just happened, it was like a light switch inside of me, and all of a sudden my pain went away. After that, the Dr's came with the great news that I could go home, that we didn't have to do surgery again. I cried and cried tears of joy, tears of gratefulness, tears of thanks to the good Lord above. I am crying right now just thinking about it! God is soooooo good!
Thank you, thank you for all you have done. For all of your thoughts and prayers. I could have never made it without you.
Please, share this with anyone you know that has lifted my name in prayer and tell them Thankyou!
I love you all!
Lisa (Steve, Karlie, and Luke) Jongsma
Saturday, May 30, 2009
Home, Alive and Free!
Friday, May 29, 2009
I praise you Lord for I am fearfully and wonderfully made!
- had a liver biopsy
- upper endoscopy
- colonoscopy
- 2 more upper endoscopies involving rubber banding of the large veins in my esophagus with more to come in the next months
- swallowed a camera pill
- had 4 CT's
- had 2 Ultrasounds
- 3 MRI's
- spent 41/2 hours in a cathlab suite with laproscopic canulization (rotor ruder)of my portal vein and embolization of my varices
- been sedated for hours and a total of 7 times
- spent 9 nights and 11 days in a hospital
- literally slept away days of my life without ever getting out of bed
The Doctors are all speechless at how busy and active I have been before this without knowing that all this "stuff" was going on inside my body, my body was in panic mode inside without me even knowing it and created a whole new defensive system to keep me alive. Isn't that amazing!
It seems like a terrible dream to me. Something that hopefully will be in my past now, something that will fade away into a distant memory. I can move on with my life, my children ( I cannot wait to come home to you and be your mom agian!!!) I cannot wait to be Lisa, (wife,mother,sister,daughter,friend). I am on a mission everyone. Look out, Lisa is ALIVE, I am well, and I am going to live like no other! I love who I am, the Lord has made me perfectly in His eyes and therefore I rejoice!!!!!! Thank you Lord, I am on my knees with thankfulness and praise for making me and holding my hand through this all!!!!!
Thursday, May 28, 2009
Lets not rock the boat anymore!
The clot in my "main portal vein" is almost completely gone thanks to my radiologist that cleaned it out last week, the flow is all open in there. Hopefully after time my spleen will start decreasing in size now that the flow is all open and they don't want to do anything at this time to my splenic veinous system. Like he said "we don't want to rock the boat anymore!". They could keep having a hay-day with me and keep doing more and more procedures to keep fixing me, but for the time, I am doing great, my labs and liver functioning is going back in the right direction, and we need to give my body time to heal and see what happens before we decide to ever do anything else. Maybe nothing will ever have to be done again, if my spleen goes down!
They believe I became jaundice from the procedure done last week, the CT shows my liver bruised, slightly bleeding, and swollen where they entered that portal vein. Also, the collaterals/"new veins" that did create in there compressed my common bile ducts restricting the flow to my Gallbladder but they think that over time this will also heal. Some of the Doctors want to do an ERCP on me now, but my surgeons think we need to wait. I agree.
Why did this happen? I now have a whole team of hematologists working on my case. I have fired my hematologist at home, fired everyone at home, and I am sticking with everyone at U of M! They are running tons of blood work, looking for anything that could have caused this all. We may never know. Some think Lukester, some think my colon surgery 8+ years ago, we don't know. Thats what makes it so hard for everyone to understand and that much harder to fix the problems. Is it going to come back? I will stay on Blood thinners for minimum 6 months and then we will consider going off them if all blood work looks good. Scary b/c we don't know if that will open the gates for it to come back....
I am staying for another 24 hours, one more night and hopefully I can come home!!!! I was so happy last night I cried! I just held my blankie from my kids and cried tears of joy. Give thanks to the Lord for He is good, His love endures forever! I praise the Lord for all He has done, for bringing me here to U of M, for all of my Doctors here: Woodside (floor Doctor who is here everyday for a month! Sonnenday, Engelsbee, (liver surgeons)
York and Lewis (liver Specialist), Dasika (the interventional radiologist), Lisa Glass (Hematologist).
I thank the Lord for my parents, Steves parents for taking awesome care of my children while I have been gone, my sisters for being with me, my wonderful husband for holding my hand throughout this entire journey (he has been awesome and knows so much about me and the medical field now! hopefully this is it he says! :) Thank you friends and family for your thoughts and prayers, I love you all!
I can't wait to come home!!!!!!
Wednesday, May 27, 2009
Update! We're at U of M again
We arrived here at U of M last night at 1-2am, and things are beginning to be hopeful again. The Doctors, nurses, EVERYONE has been so Awesome to me, so loving, so understanding with our frustration, and they have soooo many Dr's trying to solve the mystery. They do care here, they are doing all they can, I had an Ultrasound this morning, x-rays, lab work, different fluids to treat my jaundice, I have to have another CT, and I will be staying for sure yet tonight. The Doctors are all meeting around 5pm and we hope to have some more answers.
Please keep us in your prayers! I miss my kids so bad, I even have a"blankie"of Lukes to make me smile and comfort me, resembling both of them b/c my kids LOVE their blankies! This has definitely changed my life forever.
Love Steve and Lisa
Saturday, May 23, 2009
I am home
After 4 1/2 hours spent in a cardiac interventional cath lab suite things looked much worse than had anticipated. The first 2 options were not even possible nor even attempted, so I didn't get poked there as well. He started off doing a veinogram, injecting xray dye into my veins to give him a better look. This is when it was discovered that my clot had progressively gotton worse, and that there were now more clots further up the river in all the smaller veins leading into my liver. He had only one option to make a few incisions directly above my clot on my abdomen and he did get into that portal vein and cleaned out the clot as best as he could. He also discovered more varices that we even beginning to seep blood from them, so he embolized and killed as many of them in there as he could. He could NOT place a stent b/c of the length of damage to my portal vein, it was longer than he thought and by placing a stent it would close off the now necessary other veins feeding my liver (the other onese are blocked with clots now so we cant close off more). The internal intestinal flow has become a huge river and he is happy about that BUT the flow is all going towards my spleen. My spleen is getting bigger and bigger and something must be done about it or all that he has done will not help.
He didn't do anything while in there, but my surgeon and this radiologist will now AGAIN meet with the board of U of M physicians on tuesday, and will AGAIN get the opinion of 20+ surgeons. I like that U of M does this and it assures me that the right thing will be done for me, not just one Doctor thinking that he is the only answer. What does this radiologist think?
He told us that the blood supply going to my spleen has to be cut off, not all of it, just some of it to get that spleen to shrink down! If you cut some of the veins going to it, it won't be getting sooooo much blood supply and hopefully it will shrink to normal. My spleen is functioning fine so taking it out is not the answer he believes.... He also thinks that the "BIG ONE" might have to be done.
He wants to see how my body adapts to all the changes going on inside of it right now, I need to heal, and he did alot more than he thought he would and therefore I am in major pain. We left the hospital as late as we could to see how I would tollerate home pain meds alone and last night I was VERY close to telling steve to take me to the hospital. As long as I can knock myself out I am fine.
I have alot of questions, alot of things don't seem clear to me, I cannot even begin to explain how I feel about having more things done, I have been sedated 7 times in the past 60 days and have been living life out of body......I just get really down sometimes, and when I am in pain, it makes it that much worse. I miss my kids and can't wait to hug them again!
Tuesday, May 19, 2009
The week has finally arrived! Steve and I will be taking off in the morning for Ann Arbor for an enjoyable day, doing some business ( I love watching my husband work!), taking some clients to lunch and then off to do a round of golf (hope they all have patience for me! ) We will be getting a hotel in Ann Arbor for the night b/c we need to be at the hospital at 7am on Thursday. My procedure starts at 8:30. At this time I don't have alot of information as to "What" they will be doing but what I do know is this:
It is an interventional Radiology procedure, not a full blown surgery. If this works, then hopefully we never have to do the "big one". The radiologist has a plan but we don't know what path it will be until we get in my body and try. 1st attempt: through my subclavian in my neck and femoral vein in my leg to get to the Portal Vein near my liver. He wants to get a shunt into that vein and basically "rotorudder" that clot out of there and get my flow going! If this doesn't work then 2nd attempt: going from my side through my liver, again trying to get into this portal vein. If this doesn't work then 3rd attempt, making an incision in my front abdomen directly at the Portal vein.
Why don't we know which? B/c of the extent of the new collaterals, the new veins that my body has created to by-pass this clot in my portal vein is like a major highway now. The veins could cause problems b/c we can't get into that portal vein b/c of all the others in the way.
I have a room reserved for a night. They are currently at 100% capacity, so reservations have been made for one night. Will I need it? If the first attempt works, probably not. If it doesn't, then I will.
What if all don't work? Then we have another meeting with my Gastroenterologist here in GR, the Liver Surgeon at U of M, the Radiologist who did it, and we have no choice but to do a major surgery. Down the road I might have to have the big one even if we do get this done. We don't know and don't want to do the "big one" until I bleed internally from the veins that have been created in my esophagus that I am currently getting "banded" or from one of my intestinal veins that are also getting bigger and bigger.
If this does work, my internal blood flow will go down, the veins internally will shrink in size and may even disappear, my spleen will return to normal, I won't have intestinal pain, and everything that has happened inside b/c of this clot will go away! We will follow up with a year of CT's and Ultrasounds and if all is well, I can quit my Lovenox injections, quit my beta blockers, and hopefully never see a Doctor as a patient agian!!
Please keep me, and my family in your prayers. I just can't stop thinking about my precious babies sleeping upstairs and wish I could be with them, but hopefully someday they will realize mom has to do what she needs to do right now to take care of herself and that they will in the end get their mom back, healthy and we can be together for the rest of my life however long that may be!
Love you all!
Lisa