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Tuesday, August 31, 2010

Good News! ;)

Hi everyone!

Great news! I have been able to SHOWER and put on CLOTHES - not a hospital gown! Although I still look like a model for medical equipment, I look much more like myself! And better still, I actually am starting to feel like myself again! Walking the halls tonight, every nurse on the floor stopped to congratulate me on how much better I look. My excellent nurse tonight, Deo, also took care of me one of my first nights up here - maybe Thursday or Friday? I can't recall. Anyways, he asked how my pain was and how I was doing... then said, "I didn't want to say this, but, BOY were you in horrible shape when I took care of you last! I am so glad to see you looking like this!"

Today was the FIRST day that I have not done much - every day since surgery has been an exhausting series of crises. Something would go bad, then we'd get it under control... only to have a new crisis arise. Finally today, I just hung out and rested! I did get my beautiful double lumen purple power PICC placed - the special IV that goes into my heart so I can get TPN. Deo got me all hooked up to my TPN, the IV nutrition! We're hoping that this will give me strength and energy so I can heal and not feel like I got hit by a truck (it's day 10 of no nutrition, minus 3 popsicles and a bowl of jello!). I can't stop fantasizing about food and what I'm going to eat first when I can eat again! But even a small sip of water makes me sick right now.

Dr. A is pleased with my progress, but commented that my "GI tract has always marched to its own beat," so it's really anyone's guess as to how long I'll need the TPN and how long before my stomach decides to rejoin the land of the living. We're hoping three days! There is some interesting stuff that remains to be seen... as Dr. A performed my surgery, there were NO signs of adhesions, which we thought were causing all my stomach pain and stuff. That is great news, but... there's no clear answer as to what was causing me to be sick in that way, and we cannot predict if it will return. I'm entrusting all this to the Lord. My steroid levels are back to what they were before surgery, and my body seems to be handling this quite well, praise God!

Since I'm hopefully out of the crisis stage (whew!), I'm able to welcome visitors now - just please call first to make sure that I'm awake and ready. Please pray that my family can take a deep breath and catch up from the last several days of excitement. I honestly can't remember much before Sunday, since I was so incredibly sick and hurting and out of it, which is probably quite a blessing... so last week was likely harder on them than it was on me! Pray that they can sleep and be able to get things done! I'm so thankful for their sacrificial love and care.

Hannah ;)

Monday, August 30, 2010

One Week Out

Hi, everyone!

Well, one week ago today, I was heading to the ICU! Wow, what a week it's been! Probably the toughest week of my life. I don't think we were really prepared for how tough this surgery would be on my body. I have been quite incapacitated and I'm still awfully weak. I am whole-heartedly glad that the first week out is OVER! So, how are y'all doing on the Romans 5 challenge? You should be starting on verse three now... confession: I'm not that good on verses 1 and 2. I will catch up by tomorrow, though, and I already have the next several verses memorized, so no slacking! ;) Keep up the good work!!

Today I was very, very sore. My belly is so swollen that it feels like it's gonna burst! I ate most of a popsicle today and was in so much pain for hours afterwards... my tummy is still not awake, so I'm holding off even on ice chips! Most people's stomachs "wake up" again after surgery in about three days. Mine "woke up" almost instantly after my first surgery, so this is pretty weird. I haven't had any nutrition since Saturday before surgery, so I'm very weak (and grouchy, haha). So tomorrow, they are going to put in a special IV line so they can feed me through a vein until my stomach decides it's ready to join us again. ;) I'll do the IV nutrition for at least three full days before trying liquids again. So yeah, I'll be here for a while. Please pray that I can get some more energy and strength so my body can heal!

I know I keep saying this, but please continue to pray for my mom! She has such a servant's heart and has been waiting on me hand and foot, staying every night. Please pray that I can get a little stronger so she can get to spend some time with the rest of the family and get the rest that she needs! Also, pray that I will be gracious... poor mom... today I was so tired and light-headed and uncomfortable... she was suggesting all these sweet, kind things to try and help and I just started crying... I felt like I was three! I was just so miserable that I didn't know what I wanted. She is so gracious. It's unbelievable. Christ shines through her in so many ways!

My whole family is so loving and caring and does so much to make sure I stay encouraged and lifted up! Also, thanks so much to all who are bringing meals (the boys LOVE you!!!) and praying and emailing, etc.

I am trying to focus on the little victories each day... today, I got some drains and wires off! Yay! It's getting a little easier to get out of bed. Praise God, the infection in my incision is almost completely gone! They messed with it some on Sunday, and by this evening, it looked so much better! I am still completely unable to sit due to the incision where they took out Twitchy. Ouch. But overall, my pain is under good control and I'm moving around every day! I just have to be patient and slow as I wait for my body to "wake up." Pray that the addition of nutrition (haha) will help me get stronger!

Today, in the midst of hurting a lot and feeling yucky, I was thinking about having "peace with God" through Jesus Christ. I was not having the best attitude and was feeling grumpy. But having peace with God truly transcends all circumstances and situations of life, including this one! Praise God for peace.

Hannah ;)

Saturday, August 28, 2010

Saturday Update

Dear Friends and Family,

My dad just forwarded me several emails from people... I've also been receiving so many emails and encouraging words. Thank you so much. The Lord is faithfully sustaining my family beyond what is humanly possible, so please keep them up... He is doing an incredible work and giving us all such joy in the midst of a lot of misery. And your ministry to us is simply an indescribable encouragement!

There are so many things that are making me feel quite terrible right now, and this surgery has really taken it out of me. It's time to really push through the pain and walk, walk, walk. I've been trying very hard to take several walks today. It's not a pretty sight at all... but with my sweet mom helping me every step of the way, we make it... I'm re-learning a lot of basic care activities that are new and different and much harder than before surgery.

I have a specific prayer request/praise: Here's how neat God is, that our biggest prayer request is also our biggest praise... early this morning, we had to change Squirt's bag due to a leak. Later this afternoon, it leaked again (or so we thought). Once we got the bag off, we were able to see that there had been no leak... but in removing the bag, an infection in my biggest insicion was discovered. We might not have found it for several days if God hadn't shown us the "leak." We are starting hard-core antibiotics tonight and doing some not-fun things tomorrow to get on top of this infection. Please pray for a speedy recovery!

My intestines are still "asleep" from the anesthesia, which means I've eaten practically nothing since last weekend before surgery! The lack of movement is quite painful, and I am getting weaker and weaker... please pray for a wake-up! ;)

Due to all my tubes and drains and messes, we would request some privacy still... hopefully soon I will be a little bit more socially acceptable so I can thank you all in person!

"We also rejoice in our sufferings..."

Hannah ;)

Friday, August 27, 2010

"Strength for Today, and Bright Hope for Tomorrow"

Hi, everybody!
Last night was very, very tough. Probably the worst day on record. A lot of pain and nausea and no real relief. Thankfully, things have been doing better early this afternoon! God allowed Sarah and my dad and mom to be there with me, and they were a great comfort! Please continue to pray for clear communication between the doctors. There are so many different specialties overseeing my care that it's very easy for them to assume that some other doctor is dealing with one issue or another.

Please pray for rest and peace for every member of the family! I am very weary and uncomfortable, and so is my mom, dad, sister, brothers, grandparents... Pray that we will be a bright light to all we meet. My parents had the opportunity to share the gospel and pray with a lady today at the hospital. Her mom is very ill with cancer and not expected to live much longer. Praise God for the hope only He can bring, and pray that He'll work in the hearts of these people...

Praying for a "better" tomorrow... great is His faithfulness!

Hannah ;)

Thursday, August 26, 2010

Back to the 70's

Hannah's Mom, here again.
.
Let me say, at the start, that the nurses in ICU are incredible. They took such good care of Hannah, almost knowing what she needed before she would ask. The addition of 4 bags of blood brought color back to Hannah's face, and some medical stuff she could tell you but I measured by the smaller numbers on the monitors. The numbers indicating her pulse went from the 180's as she entered ICU back to the 70's. We like the 70's.

The last two evenings have been quite painful for Hannah. She is such a good patient, so she has gotten up a couple times the last two days, just as the doctor suggested. She even started putting in some mileage ("Mom, let's just go 10 steps down the hall and 10 steps back") But, for some reason, around dinner time, some very painful pain has been plaguing her for two nights in a row.

Did I mention that it is painful pain?

Please pray that these bouts of pain would decrease in quantity and intensity and then completely stop. Pray for continued healing. Please pray for Dad and Mom and Sister and Brothers who are sad to see Hannah in such an uncomfortable state. It would be nice for Hannah and I to get to sleep some, also.

I understand that, not only did Hannah's pulse break into the 70's, but so did the August temperatures in Texas. We are so happy to be back to the 70's.

Thanks for your concern and prayers.
Cathy - Hannah's Mom


Tuesday, August 24, 2010

Firsts

Well, last night was a long night! My heart rate soared to over 180 beats per minute, my pain was out of control, and I apparently was saying all kinds of things that didn't make sense. All the staff from the floor were in my room trying to figure out what to do.

So... in my journey, I had never had to go to ICU... but that's where I found myself last night. Thankfully, the pain got under control! My hemoglobin took quite a big hit. This morning, it dropped two MORE points, so I'm about to get a couple units of blood.. another first...

Please pray for the doctors to find out and fix the source of the bleeding and that the transfusions go well. Pray for some rest for my family! And pray that I will be a light to my doctors and nurses. I've already had a chance to share what God's done in my life with one of my nurses. I've also been reminded to be so thankful for the support I have from my family and friends... love you all!

Hannah ;)

Monday, August 23, 2010

Tonight

Into surgery at 11:00 am
Out of surgery and into Recovery by 4:15 pm
Finally awake and to a room by 9:15 pm
Getting to see Dad and Mom: Priceless.

The Doctor's report:
Before the surgery, he said he was sorry to have to remove the J pouch.
He said Hannah did well through the surgery.
The J pouch is GONE
and, indeed, was full of pouchitis - so it was good to have taken it out.
Hannah was in recovery a long time for two reasons: low blood pressure, high pain.

Tonight Hannah is in pain, and these next few days may be very uncomfortable. Please pray for wisdom for the doctors with pain control, and for these measures to be effective.

It may be a long night.

King David wrote, in Psalm 139, in part:
Where can I go from your Spirit?
Where can I flee from your presence?....
If I say, "Surely the darkness will hide me,
the light become night around me,"
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.....
For you created my inmost being...
All the days ordained for me were written in your book
before one of them came to be.
(from verses 7, 11-13, 16)

It may be a long night.

Hannah's Mom

Sunday, August 22, 2010

The Lasts

Well, it's the last night...

before Squirt gets a plastic surgery makeover

that my belly will NOT have a huge scar down the middle of it

that I will have a functional bottom ;)

that I have to deal with Twitchy


Please pray for my surgeon to have wisdom and skill tomorrow.

Please pray that all the appropriate doctors (Endocrine, Anesthesia, etc) are able to make sure all the right things happen!

Please pray for continued peace for me and my family!

I'm so thankful to be God's child and to know that He is in control of this surgery! I pray He will use this circumstance for His glory. I will try to get my mom to post an update tomorrow after surgery sometime!

Hannah ;)

Friday, August 20, 2010

Semi Colon Challenge!!

Today you get a two-for-one... this is my second post today! ;)

I have a challenge/favor to ask of all you Semi Colon readers... a passage from the Bible that has been super close to my heart through all my health struggles is Romans 5:1-11. While I'm recovering, I'm going to memorize it. It's a very familiar passage, so it shouldn't be too hard. I would ask each of you to consider committing Romans 5:1-11 (click to see the verses) to memory with me over the next several weeks (trying to be done by the end of September). That's six weeks, so if you just memorize two verses a week, you'd be done in 5.5 weeks. Please pass this challenge along to your friends and family and anyone you think might be interested. Maybe practice saying the verses to someone at work or a friend or a family member. Meditate on it. Study it. And then, email/facebook/call/write/comment and let me know how God's using it in your life! This would be a HUGE encouragement to me!

Hannah ;)

Pre-Op Fun and Excitement

Yesterday was my pre-op testing at the hospital. You know, the stuff where you go in, tell all your information to a lady at a computer, who sends you to another floor, where they have you fill out forms of all the same information, then you talk to a nurse, who asks you all the same questions you just answered on the form. ;) The ironic part was that after all that, the sheet they printed off to put in my chart had some of the wrong meds on it!

I had a lovely pre-op nurse. She was complementing me on my low blood pressure and being "healthy," then read my list of meds and said, "Oh." I guess my long list of meds puts me in the "unhealthy" category. ;) She was super sweet and wished me the very best and hopes that surgery helps me feel better!

There have been a few glitches along the way. Dr. A's office sent me directions that involved me drinking a laxative prep on Sunday, which would probably kill this Semi Colon! ;) A few phone calls confirmed that they sent the wrong instruction sheet and I do NOT need to do that, which is excellent news. ;) Also, I am still waiting to hear what the exact plan is for the steroids on the day of surgery. I got a little freaked out yesterday that no one knew about that. Dr. A is supposed to call me today to let me know what they plan on doing. It will help my peace of mind to know that someone knows what is happening. ;) Please pray that all these little details get worked out!

Please also be in prayer for my family, as me having surgery and being in the hospital is stressful and adds to their already crazy busy lives...

Hannah ;)

Monday, August 16, 2010

We Have a Date!!

My surgery will be Monday, August 23 at 11 am!
A week from today.
I'm not nervous. Just excited.
Praying He will be glorified!

Hannah ;)

Friday, August 13, 2010

Surgery: The Plan

Well, my tummy finally settled down... Thank you so much for your prayers! I am still not feeling great, but certainly doing much better than yesterday. I've been drinking and even eating a little, which is great! I talked to GI Dr., who isn't sure what's going on. It could be so many things. I think it is probably just a bug, especially since my poor little brother got sick today - please pray for him! Anyways, the danger for me is mainly dehydration. The biggest bummer is that when I'm sick, I have trouble taking/keeping down my meds, so I hurt a lot more, and not being able to take my steroids is just bad news. Thankfully, I was able keep my steroids down later yesterday and suffered no ill effects from taking them late, which is simply amazing!

Thank you for all the prayers for the steroids - this week, I've tapered down, and I'm doing okay with it - none of my bad symptoms or weird episodes! Yay! I have felt so much more stable lately, and I really believe that my body's steroids are starting to "wake up" and get back in gear! We weren't sure if that would happen, so this is just so exciting and I praise God for the healing that's taking place in my body!

Twitchy is doing poorly again... I stopped the antibiotics on Sunday since I was feeling so sick, and since I've still been feeling sick, I haven't restarted the milder one. I probably should, as Twitchy is twitching and bleeding more, but if I can barely keep fluids down, I am not overly excited to pound down medicine I know will make me more nauseated.

I found out today that I will get my surgery date by Wednesday of next week. It's a slow process, but I am moving forward with having this surgery. To recap our Tuesday meeting with Dr. A: Dr. A walked in, sat down, stared into my eyes, and asked, "Hannah, what if this surgery does not make you feel better?"

Not the way I wanted to start our conversation.

I appreciate his honesty, though. He wanted me to understand that there's a chance that we do this big surgery, I go through a long and painful recovery, and the inflammation could return somewhere else in my GI system and surgery does not do a thing for my joint and muscle pain. Then, there's the surgery itself, which involves risks of significant bleeding, as the J pouch has grown into my pelvis and surrounding major blood vessels. There's a chance of getting a hernia, wound infections, bowel obstruction from scar tissue, blah blah blah, all the usual surgery risks. The bottom line, however, is that I, my parents, my GI doctor, and Dr. A all agree that the J pouch is not salvageable and that taking it out is the best choice at this point. We are not so much choosing a "curative" surgery as choosing a surgery that prevents things from getting worse and gives me the best chance at getting better.

With that understood, he detailed the surgery for me:

He will cut me open from below my belly button to my pelvis, remove as much scar tissue as possible, and put in Seprafilm, a mesh that reduces the chance of more scar tissue forming. This part of the surgery will at least temporarily relieve the pain I have from obstructions. There is always a chance that the scar tissue will grow back, but at this point, my symptoms are bad enough that I'm willing to take that risk. Plus, the mesh significantly decreases the risks of that happening.

Next, he will take out my J pouch. This is the most difficult and delicate part of the surgery, as the J pouch has (as it was supposed to do) grown into my pelvis and surrounding organs and blood vessels. Finally, he will determine what portion of my intestine leading from Squirt down to Twitchy is salvageable and what needs to go. He wants to preserve as much as possible, but does not want to leave in any intestine that could be inflamed and sick. I told him I'd prefer for him to err on the side of taking too much out... I want ALL the sick guts out of my body once and for all! ;)

**This next part made me giggle a lot and may be TMI for some of you, so feel free to skip the next two paragraphs**
The other thing we decided he will do is remove my anus. Leaving it in gives me a chance to try for another J pouch. But for several reasons, I told him to take it out. One, another J pouch would probably be plagued with pouchitis like Twitchy is. Two, that tissue down there is probably inflamed and is not worth saving. Since the goal of this surgery is to remove everything that's sick and inflamed, he agrees that this gives me the best shot at getting rid of the systemic inflammation that plagues my whole body. So, I will no longer have an anus - I will just have a scar. This is an condition referred to as "Barbie Butt" (and no, I did NOT make that up...). You know, she has a rear end, but it's non-functional. Anyways, due to my immaturity, I could not keep a straight face at all the whole time he discussed this part of surgery.

Finally, Squirt will get a facelift/tummy tuck as Dr. A will make my permanent ileostomy. Since I will most likely be living with Squirt for the rest of my life, I was not shy about giving Dr. A very specific parameters for how I expect the made-over Squirt to look/function. He should be round (he's kinda infinity-sign shaped right now), protrude about an inch, but no more, the hole should be exactly in the middle, and most of all, he should NOT prolapse. These specifications will make it much easier to care for Squirt and the skin around him. Dr. A assured me that he would do his best. There is still a chance that I will be plagued with prolapsing, but hopefully not...

After surgery, I will be in the hospital for about a week, give or take a few days. He said it's possible I may have a tough time initially and need to stay inpatient a little longer because of my steroid dependence, but with Endocrinology on board, I hope and pray that everything will go smoothly. After that, he told me that I will have four weeks of "convalescence." I asked him what that looked like, and rather wished I hadn't. He painted a rather bleak picture. It involves me going up and down stairs a maximum of twice daily, with my activities being limited to watching movies, surfing the internet, and reading. Dearest Semi Colon readers... I will need enlist everyone's help to come up with ideas to keep me entertained... I'm already bored and antsy just thinking about doing that for four weeks!!! He also told me to not enroll in classes this fall, but to focus on recovery instead. This makes me quite sad.

This will be a long recovery (and I've heard that the bottom-hole-ectomy is quite exquisitely painful for a few months afterwards) and I am, quite honestly, not looking forward to it. BUT, I hope and believe that this surgery will get rid of the inflammation that is setting off the pain throughout my body. I believe that this is the step I need to take so that I can get healthy and get back to life! I'm excited to see what the Twitchy-ectomy will do for me. ;) Most importantly, however, regardless the outcome, I know that God will be glorified through this surgery, just as He was with my first surgery. Please pray that I will keep my eyes fixed on Him!

Hannah ;)

Thursday, August 12, 2010

More Prayers, Please...

Tuesday I saw a Dove Promise chocolate wrapper that encouraged me to "Try something new today," which I took to mean, "Discuss major, complicated, life-altering surgery with your Colorectal Surgeon." I'll post more about that another day, as we're still lacking some key information (like, a surgery date).

Right now, however, I have a prayer request... I am have been throwing up all day and can't stop. The antibiotics should be long-gone from my system, so no clue why I'm so sick. But it's rather bad news for a colon-less wonder to puke a lot, as we have no water reserves due to the lack of colon. It's also bad because the way I'm feeling is quite reminiscent of my pancreatitis experience exactly two years ago. Anyways, please pray that this is nothing bad and that things will settle down so I can avoid the hospital.

Thanks!

Hannah ;)

Monday, August 9, 2010

Prayers for Tomorrow!

Tomorrow I have my appointment with Dr. A... the final frontier... ;) My parents and I have a million bazillion questions for him. Hopefully he can hold his own against our onslaught. ;) Please pray for wisdom and clear guidance from God...

Today I talked with the Endocrine Dr. She worked out my steroid plan for during and after surgery. Most peoples' bodies make extra steroids when they get sick or have surgery or are stressed. My body still doesn't make its own steroids, so I only get as much steroids as I take in pill form. To allow my body to NOT go into shock from the stress of surgery, I will need extra IV steroids just before and for a few days after surgery on top of my normal dose, so she is working out the details for that. In the meantime, we've decided to try dropping again a little on my daily dose. Please pray that my body is able to tolerate the drop! Typically dropping makes me feel terrible for a week or so, but I feel ready for this and I'm hoping this time will be different! There have been some changes in my labs that indicate my body is ready for less steroids, which is absolutely AMAZING and exciting! I drop down tomorrow. While I still have many many moons of tapering, this will be the lowest dosage I've been at since early February. Celebrate the small victories, right? ;)

I've also been having a really tough time with being nauseated and sick. I think it's from one of the antibiotics I'm taking for Twitchy. Twitchy is starting to get worse again anyways, so after tossing my cookies yesterday, I made the executive decision that it was doing more harm than good and called it quits on the Flagyl. I messaged GI Dr about it, so hopefully he's okay with that. Unfortunately, it's not out of my system yet, so I still feel very crummy.

Thankfully - and this is HUGE - I have been sleeping since I got home from the hospital! It's about ALL I've been doing, which is a little frustrating, but it's much better than NOT sleeping. I guess I'm just making up for all the sleep I missed. The patch plus pills cocktail is doing a pretty good job of keeping my pain under control, which is an amazing, indescribable relief. If I could get still a little less pain, a little more energy, and a little less nausea, I might start feeling like myself again! Watch out, world!

Thanks for your prayers and support! Hopefully tomorrow we'll have a more firm plan and date and be able to move ahead with surgery.

Hannah ;)

Saturday, August 7, 2010

Believe

I believe that the Twitchy-ectomy will put me on the road to health.

I believe that one day, I won't need to have alarms going off three times a day to remind me to take medicine to replace what my body doesn't make.
I believe that one day, I won't need all this medicine for pain.

I believe that I will finish my college degree.
I believe that I will get a job and go to work.

I believe that I will never forget what I've been through and will remain thankful and remember what I've learned,
but I also believe that I will be able to move on.

I believe that God will use surgery and whatever outcome for His glory.

And I don't say things like this unless I truly believe it. God is giving me confidence and peace, and I'm very thankful. And excited.

Hannah ;)

Tuesday, August 3, 2010

The Best Birthday Present

Sorry for the lack of updates. My mom always used to say, "If you don't have anything nice to say, don't say anything." Hence... no updates. The last several days have been incredibly painful and, for the most part, sleepless. I was, at times, pretty irrational and incoherent because I'm hurting so much and can't sleep. There was talk of discharging me yesterday, but I actually ASKED to stay longer, because my pain was so out of control. I'm usually begging them to get me outta there, so you can imagine how bad I was feeling to ask to stay another night.

But, praise God, the extra night allowed us to hit on a combo of meds that allowed me to sleep last night and is keeping the pain at a more reasonable level, so I'm HOME!! Today was my birthday, and it was the best present ever to be feeling well enough to get to go home.

Please pray for wisdom as we continue to ponder choices. Also for all the logistics and provision for my upcoming surgery to fall into place... there're a lot of details involving red tape and insurance and politics, which is frustrating. But I know that God is in control of all of this - it's just hard to know if/when to express my concerns and push to try and get things moving, and when to just sit back and wait. I'm so thankful for all the nurses I had... each one was truly excellent and went above and beyond the call of duty to make sure I was taken care of. Also, I'm thankful for my wise tech Philip, who gave me sage advice on how to talk to surgeons.

Hannah ;)