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Thursday, April 28, 2011

A Difficult Patient

Yesterday I went to see Dr. Saturday. It was good news - my labs from the ER on Monday night showed a decrease in my white blood cell count. He was concerned about the abscesses coming back or something, but since the labs are improved, he thinks my stomach is on the right track. We both think that the increase last week could be due to increased inflammation from my current joint/muscle pain flare up. There is still a possibility that I will need surgery at some point to remove the last bit of J pouch. This could be in a month, could be in 5 years - but he thinks it's pretty possible that another infection or abscess could develop because of the tissue that's still there, necessitating another surgery. I told him that if this happens, I'm hoping for BEFORE my insurance runs out in July! ;) I'd really just like to move on with my life and not walk around feeling like a ticking time bomb is in my belly! ;)

He was very concerned about my increased pain. He mentioned something about me being a difficult patient... not that I'm obnoxious (well, okay, maybe a little bit), but my body is... not normal. Since Friday, my stomach has been okay! That's great! But my joint and muscle pain has been RIDICULOUSLY bad. Just unbearable. He wanted me to get in with a new rheumatologist, but of course it would be weeks and weeks before I could see them! I have an appointment with my current Rheumatologist in less than a month, so I'll just keep that appointment. I feel (and Dr. Saturday agrees) that Rheumy has been less than helpful so far - when I have problems, she just says that I'm already on "optimal medical therapy" and asks if I'm depressed and if I've talked to a psychologist. If the psychologist could reduce my joint inflammation, I'd be happy to talk to them! ;) Not. Helpful.

I've been on a medicine for over a year now that's supposed to reduce inflammation and autoimmune activity. It takes 4-6 months to kick in, so all summer when I was hurting, we hoped I needed to just wait longer for it to work. It definitely should have kicked in by now... and I'm still having flare ups and lots of pain. At my last appointment, I asked her if I could come off it, since I don't think it's working. She told me, "I'm sure it's helping more than you think, and it's not giving you side effects, so you might as well stay on it." I don't know if I should just stay on a med that isn't helping just because it is safe... I know I am a difficult patient. Due to my other problems, allergies, previous therapies, and elevated white count, she is very limited as far as treatment options. I don't know what I expect her to do, but I wish she could do something besides suggest that I'm just depressed.

My pain has still been really, really bad. Today has been better... I pulled out a leftover pain patch, which I'm probably not supposed to do, but it is helping tremendously and I haven't needed any pain pills at all on top of the patch. Plus, God allowed me to SLEEP last night. Please pray that God will give me relief from the pain! And thank Him that my white count has come DOWN! Woo hoo! That is such good news! I also got a massage today! It felt goooood. If I were rich and famous, I'd get one every week!

At the hospital, I got to see my friend Patt, who is one week out from yet another surgery for her Crohn's disease. Her recovery is going very, very slowly, and she fell on Tuesday, so she is very sore. She has been in the hospital for weeks and weeks at this point, and that is TOUGH! Please pray for encouragement for Patt's soul and for healing of her body!

Hannah ;)

Tuesday, April 26, 2011

"I'm in an ambulance/ I took, I took the worst of the blow/ send me a redeemer..."

My pain has continued to get worse. I just haven't been able to get any relief, despite stretching, heating pad, and all my medications. Since Thursday night, I hadn't been able to sleep for more than 3 consecutive hours due to the pain. By last night, I hit a wall and totally lost it. I was in so much pain.

I ended up taking an ambulance to the hospital... the decision was made to go to the hospital where I had my surgery, which is sort of far away, and I could not imagine bumping around in the car for that long. Hence, the ambulance. In retrospect, it would have been much better to just go to the hospital locally, but oh well. I can now check "ambulance ride" of my "sick person bingo" card. ;)

Anyways, they juiced me up with pain meds for a while and sent me home. It was kind of sad: while the meds helped, they did not take away the pain. Both my parents were fantastic advocates for me last night, and I am tremendously thankful for them.

I called Dr. Pain this morning, because I figured we should probably talk, and his wonderful nurse said that he would see me this afternoon. His other nurse confided in me that he's told the office that if I ever call, he will see me that day, no matter what. Have I mentioned that they are awesome?

His nurse gave me a shot of Toradol, my favorite medicine ever. Dr. Pain didn't really want to make any changes to my meds right now. Kind of frustrating, but if the IV meds didn't really help, it's not like upping my pills will do a lot of good. He continues to hope that this pain is just my body basically detoxing from the abscesses - all those inflammatory chemicals and yucky stuff from the infection. All that junk was walled off by my body for months. Since surgery, it's opened up and my body is healing, so while my tummy is getting all cleaned out, I'll have more pain as all those toxins circulate and get broken down.

Thankfully, the Toradol helped quite a bit (and he had me wait around for almost an hour to make sure I was feeling better). He told me that I can come in every Tuesday and Thursday for a week or two and just get a shot if it helps. I may take him up on that offer... that stuff is magical for me!

Please pray for relief from pain and for sleep! And please pray that I keep my perspective in the proper place. The last several days have been so awful and my soul is definitely getting dragged down.

Hannah ;)

Friday, April 22, 2011

Bad into Good

Yesterday I went to see Dr. Pain. I was scheduled to see him next week, but I was having so much pain and popping so many pills without relief that I was getting concerned. So he squeezed me in yesterday, because he and his office are awesome like that. ;)

The majority of my pain right now is in my muscles. Yes, my joints are flaring, and yes, I still have pain from the inflammation in my tummy, but it is nowhere near as bad as the muscle pain. To put it in perspective... when I was in the recovery unit for several hours after surgery, they kept offering me pain meds, but the pain from the surgery was nothing compared to how bad my muscles were hurting. So I kept saying no to the pain meds, because the surgical pain was not that bad. Finally, I started almost crying because I was hurting so much. In my anesthetized state, I asked the nurse if I was cheating if I took the meds for other pain. She looked at me like I was nuts (or under the influence of the anesthesia), and said, "poor baby, we've hardly given you anything. Here's the good stuff," and started pushing the meds in my line. ;) Anyways, all that to say that my muscles have been hurting pretty badly.

So Dr. Pain wanted to give me... Valium. "It's the best muscle relaxant known to man," he said. I said no thank you. I'm already on narcotics, don't really want to add benzodiazepines to the list of addictions. ;) He tried to talk me into it, but I was not swayed. So he gave me some other muscle relaxant to try. He also told me to experiment with some different combinations of the meds I have to see if I can get more relief. And he told me that I'm not taking too many of the meds (which is always my concern).

He also said that he would almost expect me to have more pain right now. The abscess is finally drained, so all the infection and toxins and inflammatory molecules and stuff are getting cleaned out of my system. So they are going to circulate around and cause more pain and inflammation until everything is totally healed. In a way, the pain might be a good thing! That was encouraging! We both feel like I'm on the right track, just have to get the pain under control so I can function.

I took the muscle relaxant yesterday evening before dinner, and I dissolved into a puddle of goo within half an hour. Yeah, this one goes on the list of meds to take RIGHT before you get in bed. But I am happy to report that it definitely helped the pain! Although last night I was too melted to really feel much of anything. Which was okay - I'd rather feel like that than deal with the amount of pain I've been having!

This morning, my phone rang, and my heart sort of sank when I saw it was Dr. Saturday calling. My labs came back, and my white count has jumped back up again. It's not super high, but it is definitely elevated. He was concerned. So I have to come back to see him on Wednesday to do more labs and have him check me out. I dunno if it is mental or what, but my stomach is feeling worse now... I'm trying to not worry, but I just have this feeling that we are going to start this whole mess again - more labs, scans, antibiotics, procedures, surgery... The positive thing in all this, my dad pointed out, is the prompt and excellent care. My labs came back this morning, and within an hour, the doctor personally called me to let me know, check on me, and set up a new appointment. That is remarkable, and quite a contrast to many of the other doctors I've had. So I'm thankful!

On Easter, we remember how God turned a terrible thing - the unjust, horrific death of His perfect Son - into the greatest good imaginable - salvation for all who repent and believe. In my own life, I celebrate how, on a smaller scale, God turns "bad" things into good - that my increased pain may mean healing, that my labs are bad, but my doctor is on top of things and I'm not falling through the cracks.

Please keep my friend, Hollye and Patt, who are recovering from surgery, in your prayers!

Hannah ;)

Wednesday, April 20, 2011

Post Op Visit

Today I went back to see Dr. Saturday. Today we were to "discuss" my infamous drainage tube, which resides in a surgically created orifice in my backside. To set the tone, I wore my chocolate bunnies shirt. Dr. Saturday thought it was hilarious and laughed for quite a while.

So far, he is pleased that I have had no fevers, less nausea, and have continued with the lower dose of steroids. I'm pleased, too! ;) He told me I looked "somewhat better" than I did at the hospital. Thanks? ;)

I've been having some issues with Squirt for several weeks - he's sticking out more than he should, so it causes some problems. It sticks out enough that it's uncomfortable and harder to conceal. And Squirt catches on the edge of the flange on the bag, so the intestine gets raw and bloody. It's not nearly as extreme as my problems with the "old Squirt" - before surgery #2, he used to prolapse really badly - like 5 or 6 inches of intestine would stick out of my belly and I'd have to go lay down to push it back in. And as soon as I stood up, my guts would start falling out of my belly again. It was very, very uncomfortable and psychologically disturbing to have to literally push your guts back inside! All that to say that this is mild, comparatively. But if Squirt is here forever, it might as well be comfortable! Dr. Saturday told me that it could be fixed with a small procedure. He said we could possibly do it even in the office. I would like to get that done at some point soon (like before I lose my health insurance in July!).

Then, he said, "Let's get that tube out." More wonderful words I've never heard. The removal wasn't much trouble, except for the fact that his nurse was sort of ditzy and had NO idea what she was doing. She asked me what she was supposed to do and where the tube was stitched in. Um, I can't see that any more than I can lick my elbow! After she hemmed and hawed for a few minutes (while poking around with a pair of scissors and a tweezer), I asked her to go ask the doctor. She just kept asking ME what she was supposed to do, and I didn't feel comfortable with her messing around and pulling on stuff if she didn't know what she was doing! Dr. Saturday came back in and removed the tube. It had a huge bulb on the end of it, so I guess my fears of accidentally pulling it out were groundless! It definitely wasn't going anywhere. But it's out now and my happiness level increased.

Dr. Saturday wanted me to get labs done today to monitor my white count, mainly. He said he'd keep a close eye on me. If I develop further problems, I'll need more surgery to remove (ick... here come my least favorite two words) anal canal/bottom of J pouch. He thinks that the situation will declare itself in the next couple months. If I do well, then I'm home free - no more surgery! The lab was another adventure, involving multiple phlebotomists and sticks and much digging around to find veins. Phlebotomists of the world: if I tell you what kind of needle works and which vein works and you ignore my advice, you likely WILL NOT be able to get blood. Third time was the charm after finally getting the kind of needle that works on my tired veins. I left a grouchy patient, unimpressed with the level of competency the nurse and the lab people exhibited.

Next, we went to visit my friends who are still inpatient - please be in prayer for them. Hollye has been in for 3 weeks. A J poucher, she had a lot of pain and ended up having surgery - a HUGE HUGE incision - and Dr. Saturday was able to fix her scrunched up guts so that they will work better! She's also getting meds for the infection in her guts. She is working towards HOME and her 6 year old son in the next few days. I mentioned Patt before. She has been in the hospital for weeks and weeks - she had surgery in mid March, and yesterday she had to have ANOTHER big surgery. She has Crohn's disease, and we have a lot in common. She is very uncomfortable from surgery and fighting discouragement with all the setbacks she's encountered over the last several weeks. Please pray for encouragement and hope for Patt and Hollye!

I am still pretty miserable with pain, and my joints are flaring. I'm seeing Dr. Pain tomorrow, so hopefully he can figure something out so I can get some relief and be functional again.

Hannah ;)

Saturday, April 16, 2011

Recovery

I'm still home, which is great! I am definitely having to take this recovery slowly... I've just been pretty wiped out! I am being a good patient for once and laying around and taking it easy.

I've been doing pretty fantastic with eating - best in MONTHS! In the hospital, I got weighed at admission and I was at my lowest weight everrrr. Not good! I weighed myself again when I left... I gained 10 pounds! Probably half of that was water, since it's dropped off since I got home, but I know that some of it was real. I can definitely tell a difference - I can't see my ribs anymore, haha! ;) And my face looks different. Still working hard at eating so my body can heal! I'm still nauseated off and on, but it's getting better. Food actually is tasting good for the first time in months! It's so amazing... praise God!

I'm starting to have issues with my bladder again for whatever reason... what a pain... not sure what's up with that. Since yesterday evening, I've been having some pretty significant pain issues. So frustrating. My tummy is hurting where the abscesses are, and my muscles are hurting so bad... like they were last spring when I ended up going to the ER for pain control. I am taking my meds, but nothing is really touching the pain. I feel silly because it's not really surgical pain or anything, but it is making me so miserable.

Please pray for pain control and for faith and trust!

Hannah ;)

Thursday, April 14, 2011

Home!

Sorry for no update... I am HOME!

Wednesday morning, I felt rather better, so I got to go home for real! Dr. Saturday still doesn't think that whatever happened on Tuesday was steroid related, and wants me to continue on the lower dosage. My labs all looked fine, and I was doing better overall. I'm supposed to call him if I have more episodes of feeling super dizzy and stuff.

He told me that I still have a whole lot of inflammation in my abdomen, so although I haven't had much surgical pain (thank the Lord!!), the pain in my pelvis and lower abdomen is expected to continue for quite some time. Eventually, once my body completely beats the abscesses and the inflammation dies down, I'll have less pain. That was actually encouraging to me, since my tummy pain came back a few days after surgery. I was worried that this meant surgery didn't really work or that something else was going on, so it's good to know that this is expected, and should get better in the long run.

They left in the drain, which is a huge tube thing draining my pelvic cavity where the abscesses were... stitched into my backside. It's about as comfortable as it sounds. ;) When do I get it out? Dr. Saturday said we could discuss that at my follow up in a week. Again with the infamous vague answers... but really, I want to get all better. The last time I had a drain, I had it for 6 weeks, and it was pulled out too soon. Don't really want that to happen this time, so I will try to be patient. I would say I will "sit tight," but that's not really comfortable right now. ;)

I am free to go back to work and everything as soon as I feel up to it, but he told me to give myself a few days at home to see how I feel before deciding on that stuff. So far, I've been totally exhausted at home, whether from hospital sleep deprivation catching up with me, steroid tapering, or post surgical stuff. I don't really feel like I'm bouncing back yet, but it's only a week after surgery! I've been in the hospital so long after my other two surgeries that I've never actually recovered at home, so this is a new one for me. ;) So no plans to do much of anything for a while! I don't have to go back to work until May, so there is no rush. I'm just listening to my body and taking it very easy (yes, this really is Hannah writing).

I'm doing well at home... just trying to eat a lot and catch up on sleep! If I walk around too much, my inflamed tummy really hurts, so I'm just laying around a lot! Nausea has been better, thankfully, if I just take my Zofran. Tummy still just hasn't found its groove since surgery - either works backwards or forwards too fast! Hopefully it will straighten itself out and settle down. I'm still having really bad muscle pain, which is my biggest issue. I'm so happy that I'm able to be on the lower steroid dosage, but I'm sure that is contributing to my fatigue. But this is the first time since AUGUST that I've been able to go down, so it's awesome and exciting!

Thank you all so much for all your prayers and support and love and encouragement! It means so much to me and my family. I am so thankful and blessed!

Hannah ;)

Tuesday, April 12, 2011

God is STILL in Control

Well, this morning, I got my PICC line out, got all ready to go.... and suddenly started feeling awful. I got really dizzy and felt out of it and my stomach started hurting. Going home got placed on the back burner.

I just hung out in the fetal position. I was super nauseated and sick all afternoon. Dr. Saturday came in and sat on my bed... I am so frustrated with this... I was doing so well, now I'm crashing. I think it's the steroids, but Dr. Saturday says no way. Hopefully my system will straighten itself out. In the meantime, they restarted an IV, and put me back on fluids and IV meds and stuff.

So I'm not home. But God is still good and still in control and I trust Him!

Please pray that we can figure out what's going on and I can feel better and go home...

Hannah ;)

Monday, April 11, 2011

GOD is in Control

Today was much better! I was so worried about talking to Dr. Saturday again this morning after yesterday's less-than-fun exchange. He asked for my endocrine Dr's name, and I told him...then I told him I'd meet him in the middle with the steroid tapering, and his grin broke through like the sun through the clouds. He told me that was fine, to not worry, and to not taper any more than what I did yesterday. So we're all good... PRAISE THE LORD! Also, my body has done okay so far with the two days of tapering - I can tell I'm taking less, but it's okay - I'm not crashing!! I am having a lot more muscle and joint pain, which could be from the steroids or from the weather, so that's no fun, but it's manageable.

In other fantastic news, Dr. Star Trek and Dr. Saturday are in agreement that I can go home WITHOUT my PICC line! I will just do 10 days of oral antibiotics - that's it! Sounds better than 3 weeks of IV antibiotics and TPN, right?

I ate so well today... it was awesome! Still dealing with quite a bit of nausea, but I was able to still eat, which is great! My bladder is doing so much better adn I'm off the medicine for it... I probably need a small procedure to help widen the scar tissue that caused the bladder to shut down after surgery, but hopefully everything will just be fine now!

God is so amazing... so many things beyond what I could ask or even think have happened... the only small bummer is the fact that I still likely require more surgery when I'm healthier to remove that last bit of J pouch. But I do not have to face that today! ;)

Anna Anderson, a faithful prayer warrior, made me a sign with verses on it. The sign says:

GOD is in control.

This sign has stayed on my window ever since I got it, and it serves as a constant reminder. Why did I worry about talking to Dr. Saturday today? Why do I worry about anything? As Anna so wisely wrote for me, GOD is in control. I am so thankful for her reminder and I'm incredibly blessed by her faithfulness to pray. May He help my unbelief...

Home tomorrow!

Hannah ;)

Sunday, April 10, 2011

Roid Rage... (and this time it's not ME raging)

Today I got some much-needed rest! I took quite a long nap, which was awesome! In the hospital, they wake you up so often for stuff that you only sleep in hour chunks!

My CT scan looked okay; there's a fluid collection in my pelvis, but they think that it's not a problem. That weird tummy pain has improved, but it's been a rough day with the muscle/joint pain. And get this.... my white count it NORMAL!!! That is so fantastic! Dr. Saturday was so happy about this and said it might not even be necessary to do IV antibiotics at home - maybe just oral! The final decision about antibiotics rests with Dr. Star Trek, however.

I'm doing the infamous "calorie count" again to see if I'm eating enough to go home without TPN. I'm not a huge fan of the food they bring me and I'm really struggling with nausea, so this is a challenge and a source of frustration for me.

Dr. Saturday and I butted heads this morning about the steroids... culminating with him raising his voice, saying I was destroying my body and he wouldn't negotiate on this at all, and stalking out of my room. He just wouldn't listen to anything I had to say... and, to be fair, I wasn't really willing to listen to him, either. He wants to take me off steroids very rapidly, which I think is a horrible idea.

After some thought and prayer, I've decided to see if he will meet me in the middle and decrease more than I'm comfortable with, but less than what he wants. I did this today, so we'll see how tomorrow goes. No doctor I have understands my steroid issues, because, frankly, my story does not make "textbook" sense, and I don't understand it, either! But I know my body and what works and what doesn't. Every new doctor is convinced that they can fix the steroid issues.

Dr. Saturday is right; I do have to keep trying to get off steroids. I have to be more willing to try. I just want to do it a whole lot slower than he wants. Please pray for this conversation to go well tomorrow morning... this morning was simply AWFUL. ;( Also pray because I did start tapering today and it may hit me tomorrow. Dr. Saturday theorizes that tapering will be much easier now that the infection is going away... I pray he is right! Maybe this is the answer and I'll be able to get off the silly steroids forever! That would be so wonderful.

Today was tough emotionally... I feel like I've been here for a long time, although it hasn't really been that long, compared to other hospital stays. Having your doctor get mad at you and walk out in the middle of a sentence is pretty disconcerting, too. I know I'm getting better, but it's just hard sometimes.

Last night, I was reading Psalm 90 and 91... both truly great Psalms. In Psalm 90, Moses talks about our guilt before God and how our days are full of trouble and sorrow. So we are to number our days. We are to be satisfied with God's lovingkindness. I love verse 15, which says, "Make us glad according to the days you have afflicted us."

Psalm 91 talks about God's deliverance, how He answers in times of trouble, rescues us... why does He allow times of trouble and disaster? Why does He even let us be in situations where we need to be rescued? It's so that He can show us Himself. So that He can deliver us, so that He can reveal His great salvation. It's not about us, it's not about our circumstances. It's about Him, and His character, His great love and justice and mercy. And that puts things into perspective for me.

Hannah ;)

Saturday, April 9, 2011

Hiccup

Well... last night was a rough bump in the road for me... I had really, really bad tummy pain all night long. Thankfully, I had a fantastic nurse and on call doctor who acted fast to get me more comfortable! What a huge blessing! That did so much for my peace of mind!

We aren't really sure what is going on. Today I just laid low. Pain and nausea have thankfully been under good control with meds! I had a CT scan to see what's up. The pain feels sort of like pancreatitis, so we did labs. They all look good, so that's good! I have been running a bit of a fever, too... I'm sure everything is fine, just my body doin' its thing. I'm a little frustrated... I was doing so good. There's no reason for me to be having pain, so that frustrates me and makes me think I must be making this a bigger deal than it really is... Anyways...

My mom reminded me today of all the opportunities I've had to minister to people here and all the amazing things that have happened... there is definitely a reason why I'm here in the hospital, and if I have to be here a little longer or if I have little setbacks, then it's because God has something bigger planned! I'm just trying to rest in His plan and know that it is best!

Hannah ;)

Friday, April 8, 2011

Progress...

Today has been much better! I have been eating - small amounts, but eating nonetheless! No setbacks, just progress! Lost one tube and one monitor today - good riddance and no looking back! I'm a bit sore from the surgery, but that's it! I am having pretty bad muscle and joint pain - it hurts way worse than anything else at this point. But I can still get really good meds here, so it's all good. ;) That's the perk of being in the hospital.

Dr. Saturday told me that my white count is the lowest it's been since I've been here, which is great! Die, infection, die! The ID doctor here, Dr. Star Trek, is awesome... super funny and dry. He told me that "Whenever we inherit someone else's mess from St. Elsewhere, we take things real slowly and carefully." My protein levels are low, so they have decided I'll need to do some TPN at home in addition to 3 weeks of IV antibiotics. And I'll be here inpatient until at least Tuesday. That's kind of a bummer to me, but I've decided... we're going to just give my body the absolute best chance possible to heal. That means extra nutrition, strong antibiotics, time off work... And hopefully, God will use all that and my body will be able to beat the infection and heal itself!

The setting up of the home infusion stuff has proved to be quite a tale... remember the saga of Mr. Clean? Kinda like that. Except this is not as bad, because I'm not at home trying to figure things out; other people are trying to figure things out for me. But it seems like everyone's on the same page now, and hopefully things are getting worked out! ;)

The doctors want to try to taper me down on steroids a bit while I'm here, starting tomorrow (I said no today). PLEASE PRAY! I am exceedingly nervous about this, since I have crashed every single time I've tried to taper... hopefully, here, supported with IV fluids, infection-free... maybe it will be a different story. Please pray for the doctors to listen to me and be willing to work with me on tapering slowly... and pray that I will have a reasonably willing attitude. ;)

Hannah ;)

Thursday, April 7, 2011

Post Op Roller Coaster

Day one post op was pretty good... I felt awesome in the morning and walked a million laps. I'm a little sore from the surgery, but the only thing that really hurts is my poor bladder. After all that walking, my tummy started rebelling, bladder started spasming, and I was a bit miserable. Dr. Saturday told me to slow it down. So I did.

My tummy was working backwards, so I didn't really feel up to food, but the dietitian asked me if there was anything at all that sounded good... I asked her for a strawberry smoothie! She came in grinning an hour later... holding a giant smoothie! They don't actually make smoothies in the hospital... but Starbucks does, so they bought a smoothie especially for me! See how spoiled I am?? Plus, it was delicious!

I felt good again in the evening, and actually felt hungry! I ate some chicken and chocolate! Unfortunately, I had a very rough night... very sick to my stomach, Squirt was dumping, bladder was spasming... I was super miserable. But I have the most wonderful night nurse in the whole world, Martin, who took excellent care of me. This morning, was still feeling the same, plus, I started getting lightheaded and had a high heart rate. Dr. Saturday told me to lay low... no walking today. I was basically totally miserable and out of it until this afternoon, but I'm starting to perk up now!

One thing I was super worried about was pain control... as you know, I have had very serious pain issues with my other surgeries. Thankfully, it has been SO MUCH BETTER this time around. I'm pretty uncomfortable, but nowhere NEAR the extreme pain I experienced with my other surgeries. What a blessing and an answer to prayer.

So right now, the plan is to work towards getting home by Sunday! I will be taking my PICC line home as a souvenir of my stay! Actually, it will stay in and I will have to do antibiotics at home through the line for 2-3 weeks. That's kind of a bummer, but it's what the doctors think needs to happen to give me the best chance possible to beat these abscesses and heal up. It's also better than staying in the hospital for antibiotics! I tried to pin Dr. Saturday down on if I get my drain out before I go home and exactly how long the PICC stays in... I got a bunch of "maybes" and "oh, coupla weeks." Then he grinned and told me that doctors have to take a whole class on vague answers. Funny, but unhelpful. ;)

Please pray that I will make progress in the right direction... pray for patience and that I won't overdo it... pray that my body will heal and beat these abscesses.

God has brought some of my favorite verses to mind again and again over the past few days, from Psalm 63.

"Because your lovingkindess is better than life, my lips will praise you.
So I will bless you as long as I live; I will lift up my hands in your name.
My soul is satisfied as with marrow and fatness, and my mouth offers praises with joyful lips.
When I remember you on my bed, I meditate on you in the night watches,
For you have been my help, and in the shadow of your wings, I sing for joy.
My soul clings to you; your right hand upholds me."

It seems as though God wrote these words just especially for me, for this situation. I'm not eating much, but my soul is filled with Him. I can't sleep much, but my mind is full of His praises. He is my help, my rest, my joy, my God who holds me up as I cling to Him.

Hannah ;)

Tuesday, April 5, 2011

Surgery #3!

This is Hannah, on the other side of surgery #3! There is a lot to tell, but I'm not up for telling it all right now! And this is a total TMI post, so read at your own risk!! I got called down to surgery around 1:30 pm, several hours early (thanks to Teresa and Nicole for staying with me til my mom could come!! Y'all were awesome!). Dr. Saturday looked around, and then went after the abscesses! It was a pretty quick procedure! He was able to get to all of them, he thinks, and he put in a drain. In my bottom.

I was in recovery for HOURS, in true Hannah form. I was shaking all over uncontrollably, heart rate was insanely high, having all kinds of problems... it was a mess. They pumped me full of fluids, then I couldn't "go." After more than 5 tries... a specialist was finally able to drain almost a liter of fluid from my bladder. I had a lot of pain afterwards, not so much from the surgical area, but from my joints and muscles and bladder spasms. They were drawing blood cultures to make sure I wasn't septic. I finally made it back to my room just before 9 pm. I'm getting comfortable again, although I'm doing my typical post anesthesia dry heaving.

Thank you all so much for your prayers for today! I am so thankful for them! Thanks to my family for their love... Surgery went well, although the post op stuff has been exciting! Please pray that I am able to sleep tonight! Please pray for my fever to stay away. And pray for my poor mom, who has to "sleep" in a hospital chair... no fun!

I am so thankful for Jesus, who continues to hold me in the palm of His hand during tough times when no one else can help... He is truly all I need.

Hannah ;)

Monday, April 4, 2011

Twas the Night Before Surgery...

Today has been a more challenging day... it began at 2:00 am. I woke up in a lot of pain from my muscles and joints. I couldn't go back to sleep despite pain medicine, so I just sat up and stretched and prayed. After a while, I opened my blinds - I have an awesome view from my windows. There was a ton of lightening and thunder! I watched the storm roll in! It also sort of explains why I was hurting so bad with the sudden pressure change! I wasn't able to go back to sleep at all, but I just kept praying for people and thinking on God's Word and singing songs to myself while watching the lightening!

Dr. Saturday came in and told me that my white count has gone back up again. I started spiking a fever this morning, and that has stayed with me for most of the day. The doctors are a little concerned that I'm having a high temperature while I'm ON powerful antibiotics.

So... the plan for tomorrow afternoon/evening is to do the "exam under anesthesia" - a small, exploratory surgery. That way, Dr. Saturday can see what needs to happen in my pelvis, and he can get cultures from the abscesses. Then, they can target my antibiotics better. It's a win-win situation... if I end up NOT needing more surgery after tomorrow, they can give me better antibiotics. If I DO end up needing more surgery, they can hopefully decrease the inflammation in my pelvis with better antibiotics before surgery. So tomorrow will help determine the next step: more surgery, different antibiotics....

Please pray for relief from pain... I've been off and on pretty uncomfortable today. Also pray for Dr. Saturday to sleep well tonight and to do a good job tomorrow! And pray for peace for my family! Primarily... pray that God will be honored through this situation! I have complete peace about tomorrow and I'm not at all anxious or worried, which I know is from Him! I will try to get my mom to update after surgery tomorrow night!

I've been thinking on I Peter 1 today... God has called us to be born again according to a living hope! Jesus is raised from the dead! I have an inheritance that will not fade away! Because of this, I can rejoice in my trials. I know that as I trust in God, my faith will bring Him glory and honor! And all that is news worthy of abusing exclamation points to express!!!

Hannah ;)

Sunday, April 3, 2011

Sunday

Today, Dr. Saturday came in and told me the plan (for now)...

On Tuesday, they will just do an exploratory surgery - not to fix anything, just to look and assess what is going on as best they can. This will be sort of similar to the procedure/scope thing I had a few weeks ago, but in the operating room with operative instruments. After that, we can make a decision about what next - more TPN and antibiotics, more surgery, all of the above, or none of the above! He is pleased with my progress and encouraged that my white count has gone down a bit, but he definitely thinks that I need to stay here for a while. I'm still having a rough time with belly pain and no appetite.

I told him I was a little concerned about not doing the surgery. I have typically felt better when I'm on the antibiotics. Then, when I go off them, I feel bad again. I would hate to go through all of this just to relapse a few weeks after I stop antibiotics. Then I'd be back in the same position I'm in now. He told me not to worry; he wouldn't let that happen. He has been more or less appalled that I'm in the state I'm in now; apparently I'm pretty far gone, haha! ;) Every doctor who comes in asks, "Are YOU the patient?" because when they read my chart, they are expecting someone who acts waaaaay sicker.

This afternoon, I felt the worst I've felt since coming to the hospital, but I still look and feel better than I have for several weeks. Hopefully feeling bad is just a fluke! Please pray for my body to adjust to the TPN... my blood sugars are still rather erratic (high, requiring insulin sometimes, sometimes being a little low), which I think may contribute to how I'm feeling.

Thanks again for all your encouragement, support, visits, calls, etc. They really help so tremendously! God has given me numerous opportunities to share the hope that is found in knowing Christ with others here at the hospital!

Hannah ;)

Saturday, April 2, 2011

Progress

Today was a good day! I started TPN last night. Honestly, today I have had the most energy I've had in MONTHS. I walked around and visited with several wonderful guests (thanks so much to everyone who came!) and I didn't need to nap or anything. It was amazing. Dr. Saturday tells me it's incredible what getting nourishment for the first time in months will do! Basically, my body has been trying to use all its energy to keep the abscesses at bay. Now it's getting stronger antibiotics plus tons of nutrition to help!

On the downside, I have had quite a bit of belly pain and nausea today and consequently didn't do so well with eating food by mouth. But that's okay; that's why I have the TPN. And hopefully my tummy will start hurting less soon.

The scan showed that big cyst on my ovary again, so they had a OB/GYN doctor talk to me today. He was a strong Christian man and was pretty much the sweetest guy I've ever met. Basically, it's not big deal since it's not bothering me. He thinks it is somehow related to scar tissue and adhesions from my previous surgeries. It will probably rupture at some point, which will hurt, but clearly, I have other, bigger pain and inflammation issues in my tummy besides that, and nothing really needs to be done about this.

He did say something that really reassured me... he said, "Whenever God allows you to get married, you should really get pregnant. It would do wonders for your body. Your arthritis and autoimmune stuff would go in remission, and the baby would stretch out the scar tissue in your abdomen, so you'd have less pain." I thought that was awesome! But I've been told that the likelihood of being able to conceive would be pretty slim. He told me that, number one, God can do anything He wants to and nothing is impossible with Him, and two, I would be a great candidate for IVF. Then he told me that somewhere out there is the perfect guy, praying for me... ;) It was really cute. No idea what the Lord holds for my future, but it was nice to hear that I have options!

Please pray that God would make clear what path we should take - proceeding with surgery, or holding off! Let's beat these abscesses and get rid of the inflammation, pain, and high white count! Also pray that my body will tolerate the TPN well - I'm had some issues with blood sugar today, requiring insulin a couple times. Tonight they are upping the amount of TPN I receive, which will raise my sugars even more. Hopefully my body will adjust and my pancreas will kick in high gear to help me metabolize all this extra nutrition!

Thank you all for all your prayers and support for me and my family. I have been tremendously encouraged by you all. You help me keep my eyes fixed on Jesus! Please keep my family in your prayers as well.

Hannah ;)

Friday, April 1, 2011

Holidays at the Hospital

Being in the hospital is tough.

You go from looking like this:




To feeling like this:



People stab your arm (Oops! Twice! And without giving the lidocaine time to work!) and thread lines from your arm into your heart:




And then people come and make April Fool's Day at the hospital (see my "visitor" staring out the window? Totally fooled nurses and techs!).
And people come and play games and sit and talk.
And people bring wonderful, brightly colored Bible verses to decorate your room.
And people bring pansies picked from their yard.


Although they haven't hung my TPN yet, I am well-nourished.

Hannah ;)

Answered Prayers

So I'm all tucked away in the hospital... I came in yesterday afternoon. It was a little lesson in patience, as the reason that I came in was to get a line placed and start TPN. That didn't actually happen yesterday. But at least we got an IV in after only TWO tries and started some very powerful antibiotics and IV fluids. Plus, I decorated my room (thanks, Araenae!), read an entire novel, watched a few episodes of a TV show, and had a lovely visit from Emily! It was so good to see a familiar face! She works here in nutrition, so she gave me the inside scoop on how to get yummy food! Thanks, Emily! ;)

I did get that PICC line placed this morning! My whole arm was numb from for an hour or so afterwards, which felt so funny! It's like after you go to the dentist, but it's my arm instead of my cheek. Trying to put my hair in a ponytail was awesome! My arm kept flopping! ;) The lady did tell me that she used the last spot in my right arm. If I have to get a PICC line again, they will have to start on the other arm. But really, this should be my last PICC line ever, right?

Dr. Saturday wanted to get another CT scan today... I've been trying to avoid these, but figured they would need one more before they cut me open. They did it WITHOUT contrast (remember, I had a bad allergic reaction to the contrast in October), so the only risk to me is cancer from the cumulative radiation from having 8-9 CT scans in the last year or so. ;) I did have to drink some yucky stuff first, though. I was super nervous/minorly freaking out about drinking it. The last time I drank it, I had some of the worst belly pain I've ever had. And for me, that's saying something. I texted several people asking for prayer because I was not excited about going through that again! And... God answered! Thank you all so much!! ;) I drank it real slow and only got about 3/4 of it down... but it did NOT make me sick or hurt me! They gave me nausea and pain meds after I drank half of the stuff to help prevent any bad reaction. God is so good in those little things! ;)

The report on the CT is actually... IMPROVED! Praise God! This will make surgery much simpler and more likely to succeed! In fact, there is a small chance that I may not even need surgery or I could just have a more minor surgery! This could be possible if I show tremendous improvement on antibiotics alone after several days. I would need to have my white count go back to normal and my belly pain go away. This is just a very small chance, but God can do it! Honestly, though, they are keeping me on the schedule for surgery on Tuesday. But all in all, this scan was such good news. It showed very large amounts of inflammation throughout my pelvis, explaining the pain I'm having, but the abscesses are a bit smaller than they were in October, at any rate! This makes the situation much more straightforward - things aren't as "messy" as they were.

Dr. Saturday teased me about having to twist my arm to get me here... everyone who has seen me says I look perkier... I really do feel more energetic! Whether it's the fluids or antibiotics or both, I have more energy than I have in a few weeks. The doctor hopes to see even more improvement once my nutritional status is improved. My stomach is hurting worse and worse, though, which stinks, but really, I've been through much worse. And he told me that I'm not crazy; there is a very legitimate reason why my stomach hurts so much and why I have trouble eating, so he told me to not sweat it. This is silly, but those words were good to hear... sometimes I start thinking I'm being dramatic or something.

So today, I'm just hanging out! Hopefully starting TPN. I met a lovely lady, Pat, on my floor today... she has Crohn's disease and, although we are 50 years apart in age, we have basically led parallel lives with surgeries, ostomies, TPN, pain, treatments, abscesses... we also share a love for Jesus! My verses and comics on my door (thanks again, Araenae!) caught her eye, and we started chatting. She told me to hang in there and never give up! Between hospitalizations and surgeries, she is a competitive skiier and tennis player! She lives in Colorado, but comes all the way down here when she needs surgery so she can have Dr. Saturday operate on her.

I had some lovely, lovely guests today... bearing games and April Fool's jokes and wonderful brightly colored verses!! I'm thankful for the company and encouragement! I'm thankful for all the prayers God has answered today: getting that contrast down, improvement on the scans, encouragement from visitors, opportunities to share the hope I have in Christ!

Please pray that God will make it very clear the path we should take, and that my stomach will start feeling better!

Hannah ;)