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Thursday, May 31, 2012

Good News/Bad News

Sorry I haven't posted in awhile!

Here's the good news: on Monday, they replaced my PICC line. Since 2008, I've had 5 PICC lines, all placed in my right arm. They each leave a little round scar. I am getting close to having the Big Dipper constellation on the inner part of my right arm! So I was a little disappointed when the nurse went for the PICC in my left arm.  ;) It took the lady a couple tries to get the line in, and she didn't lidocaine me enough. She told me to tell her if I could feel it, and I said, "Yes. Ow," and she said, "Well, I'm almost done, just hold still." Not really sure why I was supposed to tell her if i could feel it... since she didn't intend to do anything about it! Anyways, I now have a PICC line in my left arm! I am very thankful for PICC lines. I don't have to get poked for labs - they can just draw blood out of one of the lumens. I don't have to worry about the IV blowing, and I can get my anti-nausea meds. Plus, mine is purple. I like purple.


My stomach has dramatically improved, and I am EATING again! It is still hard work and requires anti-nausea meds, but I am eating! I eat small amounts very slowly, then walk for 30 min to an hour after eating a meal. The pain in my pelvis/lower abdomen is improving, too, which is great! There was some discussion of restarting TPN in my new PICC line, but by Tuesday, I was able to eat enough food to satisfy the doctors. 

Yesterday late afternoon, Dr. Opposite freed me from my IV pole (except for when I'm receiving my IV antibiotics)! We are going to see how I do without IV fluids. This is the real challenge for me. I have to be able to drink quite a bit, which is hard when you have a shrunken, nauseated tummy. I can't fill up on liquids, though: I have to leave room for food, too. Finally, I also have to be able to absorb the liquids I drink. Please pray that I will be able to stay hydrated and nourished!


Here's the not-so-good news: Dr. Saturday is gone through FRIDAY of this week. So, in Dr. Opposite's words, "I have to get you out of here before he gets back." I think Dr. Saturday understands my body's idiosyncrasies better than Dr. Opposite does... and boy, does my body have some idiosyncrasies! My white count was trending down from Monday to Wednesday, but I was feeling crummy. Very tired and lethargic. I started running fevers again and getting night sweats. Dr. Opposite wasn't worried about it, since my WBCs were looking better. Yesterday, he mentioned, for the first time, the D-word... discharge! I am eating well, and could go home on oral antibiotics. I'd have to be monitored closely with labs and scans to keep an eye on the abscess, but I could go home.

Sadly, this all went out the window this morning. My white count is reflecting what I've been feeling for the past few days. They made a big jump back up, so I need to stay in the hospital. I asked how long I'd have to stay, and he told me he wished he knew. That doesn't sound too promising to me!

The past two nights have been fairly sleepless due to really bad muscle pain. It has been a rough couple of days with pain. Pain flares seem to be my body's way of signaling that I have an infection. Today we are going to try an anti-inflammatory medicine that's really helped my pain in the past. Hopefully we can get it back under control.

I really appreciate all your prayers and support and encouragement! I know it's wearying to keep praying for someone as their trial just drags on and on - but please, please, don't stop praying! I was reminded of the story Jesus told in Luke 18 about a widow who was being harassed by a wicked man. She pled before the corrupt judge of the city to take up her cause. Even though he didn't care about her, he got so tired of hearing her beg that he gave her legal protection. Jesus concludes that if even the unrighteous judge helped the widow he didn't care about, "Will not God bring about justice for His elect who cry to Him day and night, and will He delay long over them? I tell you that He will bring about justice for them quickly...." (Luke 18:7-8a)

Please be in prayer for me and my family! It's been 3.5 weeks since I got admitted, and it's just tough on the whole family. The novelty has worn off and it's so easy to lose perspective. I am so thankful for the body of Christ and for the ministry of so many people. You all keep me encouraged and strengthened in the power of Jesus Christ.

Hannah ;)


Sunday, May 27, 2012

Plot Twist

So... the CT scan showed a new abscess.

Yeah, a new abscess.

It's in the area where I had this last surgery, in my left lower pelvis. It's too deep to be able to drain with a big needle (like they did back in 2010 and like they were considering doing to the grapefruit-sized infection I just had removed).

Also, my white count had been creeping up over the last few days, culminating in a very high count on Friday. And I started having night sweats and running low grade fevers. And my muscle pain has flared up.

I can't believe that I have another abscess. I just don't even have any idea what to think. My mind is kind of blown. This was a plot twist I didn't anticipate.

Dr. Opposite said it's possible that it's just fluid collecting from the surgery... but with the spike in my overall pain, the elevated white count, and the low-grade fever, it feels like "same song, 5th verse," since this is always how I present with an abscess.

Just to be on the safe side, they pulled out my PICC line, as it can be a source of infection. Apparently that's why they stopped the TPN - it can't be given through a small peripheral IV. Also, the main medication that keeps my nausea under control can't be given through an IV as small as the one I have now - the medication is extremely damaging to tissue, and they don't want me to lose an arm! The med is available in a pill form, but it takes over an hour to kick in (and I personally think that whoever invented nausea medicine in pill form has never been nauseated). So, I can't get IV nutrition, but I am not getting as good nausea control either. That's been a struggle, but I've been working very hard at eating a little bit more every day. Thankfully, my stomach is definitely absorbing now!

They had turned down my IV fluids a lot since Friday, and my POTS definitely noticed that - my heart rates jumped up and I've been shaky. The nausea makes it hard to hydrate myself.

Anyways, my veins are sooo shot, so it was a challenge to get the new little IV in, and it lasted all of 12 hours before it blew. I woke up in the middle of the night with my left arm looking like Popeye's!



A super-star IV starting nurse came up from another floor at 3 am and dug around for awhile before landing a new spot in the other arm. It's been tenuous at best, but has done its duty for the most part. Tomorrow morning, I'm getting another PICC, which will be great.
Dr. Opposite said I need a minimum of 10 days of antibiotics, but he said that all 10 days do not necessarily have to be in the hospital or even IV. 

I am not sure how much longer I'll be in the hospital... at this point, I think I am very close to being okay at home. I just need to be eating and drinking a little better, and the infection needs to be on its way out. I am concerned about this new abscess dragging on forever like the other ones. Living for months with this low level infection brewing and feeling crummy until finally I can't stand it anymore and I have another surgery. Please pray that God will make it very clear how we should treat this abscess. I would love nothing more than to have this "fixed" once and for all and be able to "move on" a little bit... but not my will, but God's be done.

Even though this is a plot twist to me, this was not at all unexpected to God. He knew this would happen, and He allowed it to happen, so I know that this abscess is His best for me and that He will use it to bring glory to Himself somewhere... glory from a pocket of infection. ;P What a cool God who can turn something gross into His glory.

Hannah ;)

Friday, May 25, 2012

Testing

Yesterday and today, the doctors have been running all sorts of tests due to the elevated white count. They've drawn so many tubes of blood that I'm surprised I'm not anemic! ;)

Dr. Saturday decided that he really needed to see a CT scan. I have held out long and hard on this one, since I've had so many that it's a radiation risk, the oral contrast makes me sick, and the IV contrast sends me into anaphylaxis! But he said he just had to have it, so yesterday and this morning, I was premeditated with lots of steroids and benadryl. I love the steroids... I feel so much less pain when I'm on them! Wheee!

The actual CT was okay. I was very nervous about having another reaction. I made my mom come down to radiology with me in case something happened. The radiologists monitored me very closely the whole time. I did get an itchy tongue and throat at the end, and was pretty nauseated. They gave me an extra shot of benadryl, which took care of the itchiness! Praise God for no anaphylactic reaction!! Most relieved.

Dr. Saturday is going out of town for the long weekend... leaving his partner in charge of me. His name is Dr. Opposite. Whatever I say, he hears the opposite. He comes in and asks how I'm doing. I'll say, "I'm feeling really crummy today," and he'll reply, "That's great! You're looking fantastic!" Every. Single. Time. I don't really know where the communication breakdown is occurring... it's really funny. Anyways, this morning, they talked about how I needed to stay on TPN (IV nutrition) for a few more days, until I start eating better. So I was very surprised when my nurse came and took down my TPN! Apparently, they changed their minds after talking to me... I guess I'm off TPN now. So frustrating to hear one thing and then have the complete opposite thing happen.

I'm pretty nervous about having Dr. Opposite taking care of me this weekend, since he does NOT listen to me... God is in control, though! I think I am making some progress... still really struggling with nausea and intermittent stomach pain, but my stomach is absorbing, which is good. Baby steps...

Please pray that the CT will be a good test and that the doctors will get the results as quickly as possible!

Hannah ;)

Wednesday, May 23, 2012

Update

Last night and today have been kind of rough. I'm having more muscle pain and my tummy is hurting, too. I think I'm more uncomfortable this week than I was directly after surgery! No fun. I think I need to just push through the belly pain as everything is trying to remember how to work properly.

Dr. Saturday wants me to stay on IV anti-nausea medicine - one every 4 hours, the other ever 6 - to try to keep the nausea under control so I can eat. So far, I have eaten animal crackers, Jello, pretzels and mashed potatoes. Thankfully, my stomach started absorbing and digesting things yesterday evening! Yay! So thankful for that! I'm making baby steps of progress in the right direction. Because of the powerful antibiotics I was on, I have thrush (an infection in my mouth and throat), which makes food taste weird and makes eating rather painful.

Dr. Saturday was also concerned because my white count has been creeping back up. It's not alarmingly high, but it's not normal. I have been fever-free for the last several days, which is great. Just to be on the safe side, Dr. Saturday restarted me on another powerful IV antibiotic. He told me that they excised the infection in surgery... but they were not able to definitively identify the source of the infection. They have absolutely no clue where or what it is, since they couldn't tell with all the tests they ran prior to surgery or while I was in surgery. That kind of freaked me out a little bit... it's possible that the source of this infection is still lurking somewhere inside my body. ;( Hopefully this isn't the case!

I know that the Lord has brought me through much worse, and I'm so thankful for that! With that being said, I am ready to be at home. Please pray for my attitude - that it would be one of patience, joy, and endurance!

Hannah ;)

Tuesday, May 22, 2012

Hospital Limbo

There's a truism among hospital patients that you have about 5 days after surgery to get out of the hospital. If you don't... more and more problems start popping up and your stay gets longer and longer and longer.  

I kind of feel like I've hit this point! ;) Stuck in hospital limbo!

This weekend was pretty miserable with lots of nausea and belly pain. It was probably the worst I've felt since coming to the hospital! Things are more manageable now with two different round the clock nausea medicines. I did have a bad bout yesterday evening with really intense nausea and pain, but thankfully, we were able to get on top of it quickly and I felt fine a few hours later. I am really blessed with incredible nurses and doctors - they make SUCH a huge difference. I have received amazing care above and beyond what I could imagine!

The good news in all of this is that I am on a lot of IV fluids to make up for the fact that: 1. I'm not drinking and 2. I am losing over a liter of fluid per day from Squirt, even if I don't eat or drink anything! The IV fluids have essentially cured my POTS symptoms! I have NO racing heart, shakiness, dizziness... my stamina is so much better than usual, and I can stand up for long periods of time without seeing black spots everywhere. My body just seems SO much calmer and happier because of the IV fluids. It's made me realize just how awful the POTS makes me feel, since I feel like a different person when I'm on them. Now I'm nervous about giving up my IV fluids - wondering if my POTS be worse after I'm off of them, since my body will be used to the extra fluid volume. But I don't have to face that battle today!

Dr. Saturday decided to start TPN (feeding through a vein) yesterday to give me some nutrition. I didn't really eat for the first week when I was in the hospital, because I was hurting a lot and felt so sick. Since the surgery, I haven't eaten much, either... so it's been a couple weeks since I've really eaten! He also told me to start picking at meals - trying to eat a few bites here and there. I am nauseated, but super hungry - such a weird feeling! I dream about food and eating! Don't take it for granted, folks!!

Dr. Professor came by today informally, just to say hi. He said that he kept hoping I'd get better and go home over the weekend... but my tummy had other plans! He is such a nice doctor.

Please keep my family in your prayers... having me be in the hospital is rough on them. I'm also dealing with a lot of disappointment... I had to postpone starting my Physician Assistant program for a year. God knows what He's doing, and I'll get there in His timing if that's where He wants me to be. And if it's not His will, then He'll lead me in a different direction!

But in the meantime, I'm in limbo.

Hannah ;)


Sunday, May 20, 2012

Take Steps!

Faithful blog readers, I admit to you that I have kept you in the dark concerning a major part of this hospital stay. My dear friend Nadia came and visited and brought me an amazing gift: a little misfit she crocheted, complete with a stoma of his own. I christened him Bahlor, and he has been nothing but trouble since then! I will upload the pictures of all the messes he's gotten himself into very soon!

From Friday through Sunday, I was extremely nauseated and had quite a bit of tummy pain. I spent Friday night dry heaving (which I would NOT recommend after open abdominal surgery). Despite not really eating or drinking, the nausea continued, and I was losing over a liter of fluids daily from my ostomy. Not. Good. Sadly, I was not able to go to Take Steps on Saturday... so Bahlor went in my stead.

Here's Bahlor with Nadia and Dennis, the captains of Team UCVlog:

Here's the whole team!


This one is so cool. I love the symbolism here... Bahlor being supported by this big team of people.



More pictures of Bahlor getting into trouble at Take Steps.

I can't thank you all enough for all of your support! So many people gave so generously! So many people came out to the Walk! I felt so honored and blessed and encouraged! Team UCVlog reached our goal and raised over $3,500!! This money will go towards research and support for people living with IBD, and to fund Camp Oasis, a camp for kids with IBD. You are making a difference in the lives of those who suffer from Crohn's and Colitis... and maybe one day soon, we will have a CURE!

Hannah ;)

Friday, May 18, 2012

Setbacks

So... unfortunately, I've been extremely nauseated since my last post. It's been pretty intense, and this is probably the worst I've felt since being in the hospital! Bummer! Dr. Saturday made me NPO yesterday morning after he found me leaning over my little pink bucket during rounds. This is a huge setback... first I have to be NPO for a day, then I can have liquids for a day or two, then I have to be able to eat for a day or two...

The good news is that my incisional pain is pretty much gone! I've been able to move around really well from the first day after this surgery, which is pretty amazing to everyone, including me! No one can believe that I just had open abdominal surgery. It really only hurts when I cough or something. This is a HUGE blessing... just remembering where I was back in 2010 after my J pouch removal surgery - even after a week, getting out of bed was a MAJOR ordeal and excruciatingly painful. So this is great. Trying to focus on the positives here. ;)

Sadly, even being NPO yesterday did not calm down my tummy. I am dumping really, really bad. This morning, I broached the topic of getting a pass from the hospital to go to the Take Steps Walk on Saturday. He was not very excited about that. He said that with the amount of output I'm having that I am simply not stable. Even a few hours off my IV could result in such bad dehydration that it could damage my kidneys.

There are no words for how disappointed I am!

I am so tremendously thankful for all the support I've received during this hospital stay and all the time from so many friends. I've been blown away with your generosity in helping me meet (and now exceed) my personal fundraising goal. And I looked forward to thanking some of you personally at the Walk on Saturday. It's still not entirely out of the question... he said we could discuss it more tonight... so we'll see.

Like I said, thanks to your help, I've EXCEEDED my fundraising goal! But my team is still about $100 short of our team goal! Please, if you're able, go online and donate $5 or $10 to help us reach our goal! We're raising funds for people like me - people who suffer from Crohn's and Colitis, who spend weeks on end in the hospital, live in pain, are not able to eat by mouth, take harsh medications many times a day, and constantly be monitored by their doctors. We need better treatments. We need more research. We need more support. Please help us reach our goal!

Hannah ;)

Wednesday, May 16, 2012

Slow and Steady Wins the Race

My tummy is still having some issues getting straightened out... after you have surgery, you have to wait for your stomach to "wake up" from the anesthesia/trauma of surgery before you can eat or drink. We knew that my stomach was definitely awake, since on Sunday, I had a TON of output, although I was still NPO (nil per os, nothing by mouth). So on Monday, I started on a clear liquid diet.

Unfortunately, I got very distended and my belly hurt a fair amount. Perhaps my tummy wasn't very awake after all? Then, in the night, I suddenly had tons of output - enough that I nearly blew out Squirt's bag and my labs and other signs indicated that I was very dehydrated! We spent yesterday trying to catch up with my fluids and electrolytes - in addition to doubling my IV fluids, I had to get several bags of potassium.

Yesterday, Dr. Saturday allowed me to eat food, too - figured adding in some carbs would help my tummy to absorb some of those fluids. Things went better by the evening, thankfully. Today I got another tube out, but have been struggling with nausea more. I'm trying to ease into eating and drinking slowly. Feels like I still have a ways to go, but I am doing so very well, all things considered!

Dr. Professor said that the pathology on the cyst came back. It showed lots of infection, inflammation, and scar tissue. There was a hemorrhagic ovarian cyst, but the main large cyst was apparently an infection that came from the fallopian tube, and had destroyed the fallopian tube and ovary on the left side. He thinks that the infection came from that old abscess spot where I've had so many infections in the past. He said that he thinks I'll feel much better in my belly now that I have the softball-to-grapefruit-sized mass of infection outta there! Unbelievable!

I was up most of the night with bad muscle pain... boo. It's making a comeback. Today wasn't as good of a day as yesterday, with more pain and nausea and just feeling kind of blah. Hopefully this is just another little bump in the road. I sincerely hope to be out of the hospital by Saturday for Take Steps!! If not, I will try to get a day pass so I can still be present at the Walk! I am so thankful to y'all for your support in this - Team UCVlog.com is at 87% of our fundraising goal! Please help us out today so that YOU can make a difference in the lives of people like me who suffer from IBD!

Hannah ;)

Monday, May 14, 2012

Update!

Sorry to be so late updating! Surgery went well, as my mom so aptly reported!

Dr. Saturday and Dr. Professor both told me that they don't know what that large cyst really WAS or WHY it was there... but they both emphasized that it was larger than a softball (!!) and very entangled with my left ovary, fallopian tube, and "stuck" in my pelvis along the area where my abscesses were. They hope that what they removed will fix the drainage, intermittent pain, elevated white count and fevers. They are hopeful that the pathology will give them more information about the cyst!

I am just SO thankful. God has brought me through yet another big surgery. My biggest fear was the terrible uncontrolled pain that I experienced after my first and second surgeries. My anesthesiologists and surgeons and nurses have been so fantastic in working to make sure that my pain stays under control. And  it has not even been an issue. For the first two days, I was sore and a little swollen, but not really in much pain, which is AMAZING if you consider that I just had major abdominal surgery with a big incision! God is so good!

Another big issue for me after surgery is terrible nausea and dry heaving that can last for hours and come back for days. Thankfully, that has not been an issue this time, either! Wow!

I've been a good patient - taking lots of walks and getting in and out of bed. I can't believe how mobile I've been able to be from the get-go with this surgery. Again, God is good.

The third day is traditionally the hardest for me after surgeries, and sure enough, today was a bit tougher. I go back to my "normal" dose of steroids (I take stress doses when I have a surgery), which makes me tired for a few days. I also hit a peak of swelling... My "outie" belly button is now an "innie." I got to start drinking today, but I think it was too much too soon, so I have to slow down tomorrow.

Dr. Saturday came by tonight and decided that, instead of progressing, we should make no changes in anything tomorrow. A little frustrating, since I just want to get tubes out and go home... but I know in my heart that he's right. Let's just do this recovery stuff once, and get it right the first time, even if it feels like it's taking forever. ;) He knows that my body does things its own way, and I'm thankful that he prefers to listen to my body instead of pushing it!

I remain incredibly thankful for how amazingly well God allowed the surgery to go - that they removed what they think was the problem, didn't have to take out too much other important stuff, that my pain has been so well-controlled, that my body has responded well to the surgery, for the incredible staff here, for my family's continuous support, the encouragement of dear friends... I am such a blessed girl!

With that being said... there's one other thing you can do for me! On Saturday, I'm supposed to walk at the Take Steps walk for the CCFA (Crohn's and Colitis Foundation of America) to raise money supporting research and support for patients who, like me, suffer from Inflammatory Bowel Disease.  Although I doubt I'll be able to walk a 5K by Saturday, I plan to be at the Walk... even if I have to go on a 3 hour pass from the hospital with a PICC line sticking out of my arm! Why? Because this cause is that important! Something needs to be done so that the kids born today don't have to suffer like me - so that they don't have to go through innumerable treatments and abdominal surgeries for a chronic, incurable autoimmune disease... Show your support by coming out to walk, or by donating! Just a $5 or $10 donation makes a difference!

Hannah ;)

Saturday, May 12, 2012

It Went Well

If you had to have surgery, the experience should be this good every time.

This is Hannah's Mom.  I wanted to let you know how things went for Hannah in surgery today.

It went well.

The nurse anesthetist was the first member of the surgical team Hannah met.  He had graduated from her alma mater: apparent by the color of his cap - and the logo, (Go frogs!)  and, of course, indicated a high caliber of skill and knowledge.  The Anesthesiologist was the head of the department - the best they have.  And that whole team was thorough, had a great plan for pre-op, for during the operation, and for pain control afterwards. They assured Hannah that she would receive her dose of steroids.  In fact they let her watch them give the steroids just before they went to surgery.

Doctor Professor came next and met Daddy. He said he goes into surgery with much prayer. What peace that comment and stance brought to Hannah, her Dad and me!!

Dad and I left the Pre-op area as they began to ready her to move to the operating room.  An hour later we got a call indicating they were just starting the surgery.

After an hour and a half Dr. Saturday came to report.  There were very few adhesions and those that were there were slight and easy to detach.  He gave Squirt a face lift - making Squirt shorter and with less circumference. He also noted that they found no fluid collection or abscess that would explain the drainage and infection Hannah has been experiencing.  But he said there was a large cyst on her ovary.  As he said "large" he held up his fist the indicate its size. He also said he was done in surgery. The details about the cyst would better be explained by Dr. Professor who specializes in that area of the body.

Half an hour later Dr. Professor came to speak to us.  He said that the cyst was the suspicious character in the story.  The cyst had wound itself around one ovary and fallopian tube.  He said the cyst was large, and needed to be removed, along with the ovary and tube. He thinks that the cyst was connected to the tube, most likely causing the drainage problem.  He took samples from a number of areas, looking for infection.  Everything has been sent for pathology reports with results expected by Tuesday.

Recovery went very smoothly - enough pain meds and good control of nausea.  At Hannah's request they let one parent stay with her during the time in recovery.

Hannah was in surgery for 2 hours.
God provided a great Anesthesia team.
God provided two doctors who took great care with her.
God moved on the heart of the recovery charge nurse so her Mom and Dad could be with her.
Squirt got a face-lift.
And it looks like the doctors found a suspect for the drainage problem.

If you had to have surgery, the experience should be this good every time.
Reporting for Hannah,
Cathy


Friday, May 11, 2012

Psalm 16!

Fixing to go down for surgery!

Dr. Saturday just poked his head in my room and asked, "Are you going to play nice in the OR for me?"

I told him I would if he would!

It's on.

The test yesterday was helpful to the doctor... it's still a bit of an unknown what they will find when they open me up, but guess what? God does know what's in there!

Dr. Professor told me that he approaches a surgery like this with much prayer. I'm thankful for that! My prayer:

"Preserve me, O God, for I take refuge in You.
I have said to the Lord, "You are my Lord; I have no good besides You."
The Lord is the portion of my inheritance and my cup; you support my lot.
The lines have fallen to me in pleasant places.
I have set the Lord continually before me; Because He is at my right hand, I will not be shaken. Therefore, my heart is glad and my glory rejoices; My flesh also will dwell securely.
For You will not abandon my soul to Sheol; Nor will You allow you Holy One to undergo decay.
You will make known to me the path of life; in Your presence is fullness of joy; in Your right hand there are pleasures forever."
From Psalm 16.

See y'all on the other side!

Hannah ;)

Wednesday, May 9, 2012

Date Change

So... surgery just got moved to FRIDAY afternoon.

I'm reminded that being in the hospital means that everything changes! Your schedule is not your own!

Tomorrow, I'm doing a test that involves dye... the kind of dye that gives me an anaphylactic reaction - throwing up, hives, itching, burning, wheezing, being put on oxygen. I had never seen medical personnel move so quickly in all my life, and I hope to never witness that ever again.

To prevent this reaction, I am being premeditated with lots of steroids tonight (wheee!! I'll probably be up all night!!), and more steroids plus benadryl tomorrow before the test. I did NOT feel very comfortable about having this dye again, but I've been assured by the radiologists and Dr. Professor that they wouldn't do this test if it wasn't safe, and that they feel it is absolutely necessary to do this test and know the results before going into surgery. They also told me that the dye shouldn't be going in my bloodstream, so the chance of a reaction would be very minimal even without the pre medications.

Hopefully, they can visualize the fistula better so that they go into surgery with a little bit more information.

I got a PICC line today... #5! Each one leaves a small, round white scar. I am excited to see what the scar pattern on my arm will be after I get this one out. Maybe I can play "Connect the Dots" on my arm!

Dr. Saturday also agreed to consider a makeover for Squirt... YAY! He has always been a bit more "protuberant" than the "ideal" stoma, but he prolapsed a bit more several weeks ago. He's now hanging a good 2-3 inches off my belly, and I can't get him to go back in. He rubs against the plastic part of the flange, which occasionally causes bleeding and is very mildly uncomfortable. He is also getting to be a little bit more of a challenge to conceal. It's not terrible by any stretch of the imagination, but if I'm having surgery ANYWAYS... I might as well get it fixed! Next up... tummy tuck and lipo! ;) Just kidding...

Thank you to everyone for your prayers and support! I know I sound like a broken record, but it means so much! God is good!

Hannah ;)

Tuesday, May 8, 2012

Hospital Update

So... I'm back in the hospital... back on the floor where I spent a few weeks last spring and a few weeks last summer. Dr. Saturday decided to admit me yesterday for pain control and to get the ball rolling for surgery. I met a new doctor, a gynecologist, who will be doing the surgery with Dr. Saturday. This doctor actually called me personally to let me know that Dr. Saturday had related a bit of my story to him, and that he would be seeing me later on in the day. This is a very personal and unusual touch for a doctor. I liked it. I met him yesterday, and he struck me as a very kindly sort who could have easily passed for a college professor - probably of history or literature or some humanity, I think. Dr. Professor took a very detailed history, and said he needed to "mull things over" last night.

We met again today. We were all hoping that either the MRI, ultrasound, or exams would yield definitive answers about where the abscess is, where the fistula is, and what organs are involved. Alas, there isn't a clear answer to any of these, but it seems quite clear to everyone involved that it is imperative to move forward with surgery.

Surgery will take place on Thursday afternoon. They will open me up, find the infection, excise it, repair the damage left in its wake. It will be a very major and challenging surgery. The difficulty is that the infection also involves the organs of my reproductive system - it's unclear to what extent. They hope to preserve as much of my reproductive system as they can, but also made me aware that this might prove impossible, depending on what they find. This was hard to hear.

I feel very confident that everyone here wants to do what's best for my health. I am comfortable with Dr. Saturday. Dr. Professor's obvious concern for me, caution, and humility have impressed me. After he examined me today, Dr. Professor left the room for a moment. The nurse who was assisting told me, "I want you to know that I've worked here for 12 years, and Dr. Professor is one of the best. He has the respect of every person that he's ever worked with. He is a strong Christian and everyone knows it. He is so dedicated to his patients." This was very encouraging to hear.

I am supposed to start school in less than 2 weeks... not really sure what is going to happen. This is very hard to think about.

Last night, I read the end of Job. It's so very interesting to me how God deals with Job. Job had done absolutely nothing wrong, but Satan asked God for permission to inflict Job with many trials. God allowed this in order to bring glory to Himself. Job asks God what he's done to deserve this treatment, and God eventually answers. God has very hard words for Job. He talks about His power as seen in creation and nature and wisdom. And He asks Job who he is to question God.

It would have been very easy for God to give Job an explanation, to quickly say, "Well, you see, Job, Satan asked me if he could do this to you, so I did... you didn't do anything wrong. This is about ME and My glory, not really about you."

But He didn't.

No matter what God does, I don't get to ask why. I don't get to feel wronged or hurt or angry with His plan. He knows what He is doing, and it's not really about me. It's about Him and His glory. I pray that I can remember this attitude and keep looking at Him.

I'm really blessed by everyone's support and prayers and have even had several visitors! Thank you all SO much! I really appreciate your prayers for me and my family.

Hannah ;)

Saturday, May 5, 2012

Hospital Run

Yesterday I talked with Dr. Saturday. My MRI showed a fluid collection in the left side of my pelvis, and they could see lots of pus and stuff in my vagina and some pretty significantly abnormal stuff like that. They still can't tell if the fluid collection is connecting with my vagina and if that's where the drainage is coming from, or if there's another infection inside my reproductive tract or what. They just don't know. So... the best option is to open me up.

I have had so many surgeries, and each surgery creates scar tissue and adhesions. Also, all the abscesses and infections cause scarring, as well. So, they will attempt to do the surgery laparoscopically, but Dr. Saturday warned me that they will most likely end up converting to an open surgery with a big incision. He said it probably won't be safe to do it laparoscopically.

Dr. Saturday said that he needs to coordinate with a gynecologist, and they will do the surgery together. Dr Saturday is a colorectal surgeon - and I don't have a colon OR a rectum - but he knows my anatomy and quirks of my body quite well, and I would feel much more comfortable with him in the OR.

Last night found me with escalating pain levels that no amount of meds touched. After hours of total misery, I called Dr. Saturday, who advised going to the ER to get checked out and get some pain relief.

In the ER, I was greatly gladdened to see a familiar face - a nurse I've had a couple times. He has been absolutely amazing every time I've seen him -- and yesterday was no exception!! He is now a Nurse Practitioner, and he took such excellent care of me last night. He knew I would be a hard stick, and sent in the resident IV starting expert (who successfully got in a vein on the first try!). Thankfully, we got my pain under control. I got some fluids, a dose of IV antibiotics, and a prescription for some more oral antibiotics. My white count is elevated, unsurprisingly, but it's not scary high, and thankfully, my other lab work looked pretty good, so they sent me home.

I talked to Dr. Saturday today... the abscess is "flaring" or acting up again, causing this crazy inflammatory reaction leading to intense pain in my whole body - abdomen, joints, and muscles. You can feel the heat radiating off my joints. ;( He will see me on Monday, and admit me to the hospital. They will expedite the surgery, since it needs to happen pretty urgently. If my pain gets too crazy bad again, I'm supposed to call Dr. Saturday, and he will admit me sooner.

So... to the hospital on Monday for yet another surgery.

I'm choosing to see the goodness of God. He has provided great people to care for me - the nurse who started my IV, the NP in the ER, and Dr. Saturday. While the pain is really awful, God is using it to expedite the surgery process, making it more likely that I'll be able to start school as planned. My family has been so wonderful to take care of me. I have the support and prayers of many friends and brothers and sisters in Christ. I am God's child. Things are going GREAT spiritually. God is good.

Hannah ;)

Thursday, May 3, 2012

Location, Location, Location

I finished my last post by saying something about not allowing my emotions get involved as doctors toss around a wide array of possibilities for how to help me. This ended up being good, because, once again, the plan has changed! I was supposed to get the abscess taken care of through a CT guided drain placement yesterday or today. BUT on Monday, the Urogyn reviewed my MRI with a Radiologist, and what they found raised some questions.

I'm not sure I totally understand what they said, but I *think* that there is some doubt about the location of the abscess. It is either in my pelvis or inside one of my fallopian tubes. The treatments for a pelvic abscess is totally different than that of an infection inside a fallopian tube. If the abscess is indeed in the tube, they would want to remove the tube. And they probably would have to do an open surgery, not laparoscopic. They think that I will have too much scar tissue and adhesions due to all my surgeries and infections. This would be a lengthy hospital stay and recovery. And I am supposed to start school in 2.5 weeks.

Anyways, today I had another MRI done. Please pray that this MRI gives them the information that they need about the location of the infection, and that they send the report to Dr. Saturday tomorrow. I pray that Dr. Saturday calls me tomorrow and that we can get moving on a plan before the weekend hits. But honestly... I hope that the MRI shows that there is no more fluid or abscess or anything and I'm totally fine and don't need any more surgeries. ;) That would be really amazing! And God can do that if He wants!

As my doctors try to determine the location of the infection, I'm trying to determine what MY location should be - starting school or not. No matter what the outcome is, I pray that God will be glorified in my life. If He wants me in school, then I'll be in school. If He has different plans, then I won't be in school. More than any career or degree, I want my location to be where He wants me to be.

I've been listening to a song that's really helped me keep my focus on God. Right now, I can't think about tomorrow, because I'm not supposed to and it does no good and just makes me crazy. there are a lot of "what ifs," and I simply can't allow my mind to go there.

"My hope is in You, Lord, all the day long,
I won't be shaken by drought or storm,
The peace that passes understanding is my song,
And I say, "My hope is in You, Lord!""

I think that living with my hope in God is the best location I could be in.

Hannah ;)