Saturday, March 31, 2007

3/30 Still OK

After a couple really great days it had to come back to reality sometime. Today wasn’t quite as good, but still pretty good. She threw up three times today and was a little off. Her attitude was pretty punchy too…not a lot of time or patience for anyone, especially big sis.

AngryMom caught a little angry moment in the tub this morning…perfectly tells the story about part of this day.

Her food was turned up to full strength yesterday and maybe that’s the cause of the less-than-perfect day, but then again, maybe not too. The home health people stopped by today to change some dressings (by rule they need to do it) and to deliver some more outrageously priced supplies (how ‘bout $16 for a syringe with 5ccs of saline – for those keeping track at home, that’s about 10 cents worth of product…including the packaging). But, and a big but, they’re incredibly nice people and they take good care of us and Josie…and they’re bandits with pricing…and I think I seriously need to get into that business – any takers? Talk about a money machine…but I digress.

Good news on the liver front. Josie’s bilirubin is way down to 1.2 and that’s just super. The whites of her eyes are just hinting at a tinge of yellow. Her ALT and AST liver enzymes are still high…about three plus times the high end of normal. Most of her other labs looked real good.

Thursday, March 29, 2007

3/29 Another Pretty Good Day

Just a couple of times were we up in the night for Josie. She’s only thrown up once in the last two days! This is great news and it’s made for such a wonderful couple days.

Today was the first time Josie’s seen any of the doctors since she left the hospital last week…and she sure did not disappoint. She was in a great mood and was chatty and happy for all the visits. She pulled Dr. Vehe (again that’s Vay and NOT Vay-Hee)’s tie, and made Dr. Acton (surgeon) laugh, and made one of the GI docs do a double-take…she couldn’t believe how well Josie was looking and doing.

The GI folk ordered to up the feeds to full strength (as we expected) to see what’ll happen. It has to go better since she’s not getting enough calories as it is. Fingers crossed on this major hurdle to recovery. Not sure what’ll happen if she can’t take in enough calories to sustain, but we’re not too worried about that yet.

Dr. Vehe was fairly impressed with Josie’s dermatomyositis progress…so much so that he wants to cut her medications again, just a little, as we inch toward getting her off most medications. Time and patience, which we now have an abundance of both…and I sure couldn’t say that six months ago. Funny how the mind works.

One little mishap today was that Josie wiped out on her little trike as she was Deb were heading toward the park. They were just boogeyin’ right along and somehow the wheel of Josie’s tricycle turned and her weight shifted, and all of a sudden she was on the deck crying…no screaming, her little head off. That didn’t last too long and the net result was that she was far more frightened than actually hurt…a little scary though, but Josie’s tough.

3/28 Much Better!

What a difference today was…there’s been only one vomit episode over the last 24 hours! Overnight there was no puking and only up twice for a pooper. All day long Josie was in a good mood with little pain. Just a remarkable change from only a couple days ago. And her raging diaper rash has really calmed down too. Josie has been asking to sit on the toidy and is now insisting on wearing underpants knowing full well she has to make it to the John when it’s time.

Deb and Josie traveled to physical therapy this afternoon and Josie did great. She was a trooper and participated like a Champ. They really want her to work hard on her contracted calves and ankles. Those must have more flex for Josie to be able to walk better with less discomfort. We’ve got our work cut out for us on that whole thing because Josie sometimes can be a real peach when it comes to doing stuff she doesn’t want to, and I can see this being one of those things…and I’m banking on her proving me wrong.

Tonight she was full of energy and having fun with the kids and really seeming quite normal and lively for a change. She was eating more than a mouse-sized portion of food too. Her appetite is slowly showing signs of life. It’s so nice to have a genuinely enjoyable time without all the business going on. Of course we’re prepared for the nine steps backward now, but we’ve all enjoyed these last two days.

Tomorrow Josie and Deb are off for a visit with the surgeons, Dr. Vehe, and the GI Team. They’ll likely want her feeds to be turned up again to full strength and then more of it to get her to 100% caloric requirements, and hopefully that won’t trigger more of the same from a few days ago.

Stay tuned.

Tuesday, March 27, 2007

3/27 Much Better Today

One of the changes made yesterday has had a great impact on Josie’s badness. She hasn't puked or retched once today and the number of poops has dropped to half of yesterday’s ridiculous number. Clearly the decrease in feeds has had an impact, but she also stopped the misoprostol and had IVIG and had a steroid bolus. So any or all of those could be the reason. Of course we’d like to know what’s made the difference but we’re just happy she’s feeling better.

Her raging diaper rash should be getting better real soon too. She’s realized that it’s much more painful to poop in her pants and have it cleaned than go on the pot. Getting to the pot is a pain in the keester for sure, but the pooping in the diaper is a serious pain in the keester nowadays.

Walking is still a real challenge for Josie too. Her little calves have contracted so badly over the last half year that when flexing her ankle she can’t even get it to 90° so when she walks she feels pain in her heels and has to duck walk and toe out big time. We have to get those feet feeling better and become more fit.

So things are looking better today than yesterday.

3/26 Bad Night, New Plan

As predicted, last night was a doozie for no sleep. That tummy of hers is causing more and more ills. She was up a ton barfin’ and poopin’…just about every 30 to 90 minutes throwing up, and then, just as described yesterday, the big Play-Doh poo. Perhaps way down along that road of life we’ll look back on it and get a good chuckle…future entertainment value at our expense today. Poor Josie’s little bum is sooooo sore, and raw, and red, and super-duper ouchy. Just about every poop now is a blowout because of the liquid. Thank goodness for those throw-away blue pads…they’ve saved many a blanket and bed sheet.

Today Josie had her latest $10,000 dose of IVIG and steroids (gotta love pharmaceuticals and insurance). The home health nurse was at our house with Josie and Deb most of the day, administer the IVIG (human immunoglobulin) requires it. Josie was pretty much sitt’n around most of the day with these infusions going on, so not much physical excercise.

Warm and Nice outsideWhat Josie did do was eat a lot more today than she has since the big surgery (actually since last summer). This is encouraging because she really needs to start taking in some real food to get her stomach back in the game. We talked to the GI docs today and they said to hold the feeds for a little while (few hours) the start them back up diluted with Pedialite by 50% and then increase the percentage from there. They also stopped the misoprostol (motility agent) because she’s still pumping out the poops like a Champ. Now that all the motility agents are discontinued and the feeds are halved and she’s eating some really food, there may be a change in the vomit episodes…we’ll see though. Stay tuned.

Josie got out a tiny bit to enjoy some of this record heat today when it was 81°… It was sure nice. Can’t wait until all the days are like that.

Monday, March 26, 2007

3/25 OK Days, Bad Nights

Seems we’re getting into a pretty undesirable nighttime pattern of the pukes, diarrhea and tummy pain while during the day there is still some of that but not as much and not as frequent. This is worse than having a newborn baby with the three-hour feedings. Josie’s was up hourly most of last night…tonight is looking to be not much different. Of course Deb is the Super-Hero-Mom-of-the-Century and has taken the lion’s share of the episodes and related clean up.

During the day Josie was still having frequent poops. What we were dreaming about and hoping for is now becoming a problem. Too much poo. Josie’s little keester is just red and raw with some serious diaper rash. The poop comes on so quick she doesn’t have enough time to warn us about an upcoming explosion, so in the pants it goes. Not fun. Of course when she retches and vomits it’s a given that there will be something waiting for us down below. Kind of like a play-doh toy…internal pressure makes all play-doh squish out the hole.

We’ll be talking with the GI docs tomorrow on a plan to stop all the motility agents as things are blowing through her now. Time will likely take care of this, but it’s really no fun, no fun at all.

Sunday, March 25, 2007

3/24 Not Much Better

Even though Josie’s home, it’s not made her condition too much better and today was a little reminder. Overnight she was up quite a few times with retching and vomiting and pooping and tummy pain. Not much good sleep for any of us. During the day Josie was feeling pretty punky much of the time with a few good spans, but too many bad ones. We were able to get her walking a little which is really critical to her recovery. Even though she didn’t like it much and wasn’t too eager to please on the workout front, she was a trooper and did the walking for us anyway.

This time home is so much better and less crazy than last, yet still a lot of things going on. We’ll be peeling away Josie’s drugs as soon as we can. Just yesterday we all agreed that it was time to stop her Zelnorm for gut motility (movement) and her Reglan (for stomach motility) was stopped two days ago…both because Josie has become a pooping machine. Lots and lots of poops daily now, which is good, but perhaps too good. It’s gett’n too liquidy which could possibly mean not enough absorption, but they’re not too concerned about that part of the issue yet. We just need to find the happy median between no poop and tons.

Good days and not such good days…this one is leaning toward the latter.

Friday, March 23, 2007

3/23 She’s Finally Home!

Coming HomeAfter so many weeks and months Josie came home today…this time for good! It’s been so long and challenging for Josie (and for us) we’re not exactly sure how the transition will go. Being in the hospital for that long, we developed some routines which, of course, will be easy to break, but establishing new ones will much more of a challenge. That all started today with getting settled in and setting the stage for all the care we’ll be delivering from now on.

Even though Josie’s home now, it certainly doesn’t mean she’s well. She’s just well enough that we can care for her here at home rather than the hospital. There’s a long, long way to go to get Josie back to some sense of normalcy.

Chilly WaterWhat a delightful day it was though. Bright sunshine and warm temperatures greeted us as we walked out of the hospital. The short drive home was great and when we arrived Josie was excited to see our melted ice rink/pond in the front yard. Of course she wanted to stick her hands in the chilly water. It’s been a play day ever since.

The Home Health folks came by and retrained Deb on all the gear and meds and procedures. She’ll have to school me again somehow so I don’t make any big mistakes…which I have a reputation of. There are lots of medicines and lots and lots of daily doses. Keeping them all straight will be interesting…but it’s nothing we’ve not done before.

Swinging FunJosie was having so much fun with her brothers today after they returned home from school. Later in the day we went outside and played on the swing for the first time since last summer. She had so much fun!

Now that Josie’s successfully and completely skipped a couple seasons, we’ll dive right into spring and warm weather and outdoors and fun. All that activity will help get Josie back to form sooner…still many, many months of therapy and healing lie ahead.

Thursday, March 22, 2007

3/22 Fun Day, More Tummy Pain

Smokey and his palsThat tummy pain is a real bugger. As soon as you think she’s getting the upper hand on it, it just comes back. But we were told many times the days would be good and not so good…10 steps forward and nine steps back…a slow march. Indeed.

Overnight there was more vomiting and pain episodes. The pain lasts for a short time, say, 10 minutes and then it’s pretty much gone for a while. The vomits are about the same…five times overnight and a few more in the morning.

Late this morning Smokey the Bear came around with a few Minnesota State Troopers to say Hi. At first I wasn’t sure what was up because there were nine squad cars parked on the street outside. Did a mass murderer need emergency surgery or something? Nah, it was just the guys visiting all the kids. Kind of fun.

Physical therapy was another banner experience. Josie walked a total of about 500 feet with the girls today and was feeling pretty good about it. River GirlShortly after that we headed out for a nice walk along the Mississippi river in this wonderful 53° heat with no wind. Spring is here to stay I think.

Much of the rest of the day was spent coordinating our departure to home tomorrow. Lots of drugs and machines and pumps and feeds and supplies and everything to figure out so we can take over for good starting tomorrow afternoon. Can’t wait.

Good news on the liver front. Josie’s bilirubin has dropped dramatically to 2.9 from a high of 7.4 not too long ago. Also, her ALT and AST have both dropped by almost a third. It’ll take months for Josie’s liver to be back to 100% but it’s now feeling much better and able to rage forward and get stronger. Great news!

3/21 Better Skin, Not Better Tummy, Drugs

Today was Henry's 8th birthday! Happy birthday Henry! He came by for some presents and cupcakes. Josie was glad to see him and wished him a happy birthday right when he walked in.

Feeling BadWhat a great day yesterday was for the pukes...they were effectively gone! Today she took a couple steps back and had her share of vomiting episodes and wasn't feeling nearly as good. Still not too terribly bad but not the nearly flawless day yesterday was. The good news about today is that Josie’s skin is looking better than yesterday... and that’s great to see. The betterment is almost certainly a result of the IVIG and steroid treatments from yesterday. The bad news is that the skin is still not as good as a couple weeks ago.

Josie’s feeds were increased again today with no problems. She’ll go up again tomorrow. That leads us to deciding on the necessity of the gut-motility (movement) drugs: Misoprostol and Zelnorm. Josie's system seems to be moving things really well so we may decided to drop one or both of these soon. This morning she also switched over to the oral form of Cellcept…another big hurdle cleared toward going home.

Here’s a current list of all the medications she’s on:
• IVIG (human imunoglobuline)
• Methylprednisolone (steroids)
• Misoprostol (gut motility)
• Cellcept (immunosuppressant and anti-rejection drug)
• Zelnorm (gut motility)
• Fluconazole (antifungal)
• Methodone (narcotic for pain…just a whiff which will be discontinued tomorrow)
• IV Lipids (food)
• Pantoprazole (protonix for stomach acid)
• Sulfamethoxazole/Trimethoprim (prophylactic(preventive) antibiotic also known as Bactrim)
• Ursodiol (Actigall used to promote bile flow and help with chronic liver disease)
• Metoclopramide (Reglan for stomach motility (movement))
• Amlodipine (Norvasc for high blood pressure)
• Enalapril (Vasotec for high blood pressure)
• Ascorbic Acid (vitmic C because it’s good for you)
• Nystatin (Micostatin for thrush)
• Lactobacillus (Probiotic (good bacteria to get her gut flora back to normal and help boost the immune system after tons of antibiotics)
• Acetaminophen (Tylenol for pain and fever)
• Oxycodone (Percoset for breakthrough pain and needed)
• Pancrelipase (Viocase to supplement pancreatic enzymes for digestion)
• IV fluids overnight for added hydration.

Phew. This is still a huge list, but we’re whittling it down and peeling off the drugs one at a time. All these will be reevaluated for their relative merit in Josie’s case as we move along.

We’re still on for Friday going home…just in time for the great spring weather headed this way.

Wednesday, March 21, 2007

3/20 Progress

Today was a good day. Josie has only vomited ONE time in the last 24 hours. She threw up at about 10:30 last night and was puke-free until about 6:00PM tonight. This is great news! So what happened? The changes in the last day were: Tummy suction rather than gravity draining overnight for the second consecutive night, IVIG dose, steroid dose, day four of the new J-tube placement, increased feeds. It’s very unlikely the increased feeds had anything to do with it, so my bet is on something else. Maybe the drugs… maybe the suction – who knows. I’m just glad she wasn’t barfing all darn day again. She’s tolerating her feeds really well and they’ll likely go up on her dose by another two to 38 milliliters per hour tomorrow, and another two the next day also…and on and on until she reaches the max of about 55ml per hour which is her full-rate. Then it’ll be a transition from jejunal (direct intestinal) feeding to gastric (stomach) feeding through the G-tube, then transition slowly to total mouth feeding. This process will take a long time for sure…maybe even a year or more…maybe even a lot more.

Physical therapy went great again. Good walking and riding the bike with little protest…gotta love it!

Dr. Vehe was in and didn’t much liking the splotchy redness on Josie’s face and eyes (sorry, no picture). He continued to stress applying sunscreen as soon as she is awake and out of bed (can’t be too safe now) and then again before going outside. The fear is that Josie may be extremely susceptible to sunlight which can set off a flare of her disease. When you get sun the UV radiation begins to damage you skin and if you’re out in the sun long enough that damage presents itself as a sunburn. Of course regardless of the severity of the sunburn your immune system kicks in to help the body fight the damage. If course Josie’s immune system is a little screwed up so kicking it into gear with something as mundane as a little sun can cause trouble for Josie. Sunscreen fiends are what we’ll need to become.

Talking with surgery and GI and Vehe today…all seem pretty cool with the idea of leaving this hospital for good this upcoming Friday. Yep, you heard it here. Unless there’s some significant setback (and Josie’s certainly seen her share) Josie should be spending Friday night at home with the family. How cool is that!?

Monday, March 19, 2007

3/19 Trouble Brewing?

No real change with her vomiting. Another 14 times over the last 24 hours, intermixed with some pretty bad tummy pain. But of course there’ve been some great times today too. Physical therapy continues to be one of the best times of the day for Josie. She’s now equating feeling good with physical therapy, and that can only be a good thing. Her walking is going slow. She’s still unwilling to walk without holding a hand of a rail…no solo walking. Being off her feet for so long has, of course, caused her muscles to weaken and atrophy, but it’s also weakened her bones too. This was verified on x-ray a couple weeks back, so getting her back on her feet and strengthen those muscles and bones is a big priority.

Josie’s feeds have been tuned up again today. Even though she’s vomiting frequently throughout the day and night, there are no feed showing up in either the vomit or the drainage from her G-tube (stomach tube). This is great and means all the food is going in and staying in. As she continues to move things along (and there’s been lots of poops lately) and keeps the feed from coming out the wrong direction, the rate of feeding will continue to go up…right now she’s at about 2/3 or full-rate. This isn’t enough to sustain her body so they’re supplementing her diet with IV lipids to add some more calories and fat on Mondays, Wednesdays, and Fridays. Still, the current calories are not enough and Josie’s beginning to lose weight. It’s not a big concern yet but being able to increase feeds is huge to getting her to 100% and gaining weight again.

Josie’s underlying disease (Dermatomyositis) is showing signs of a flare up (bummer!). Dr. Vehe is unwilling to call it a flare…yet…but he’s a little concerned. Her finger nailfold capillaries are brightening. Her cheeks are rosy and her eyes are showing increased splotchiness. There are also some marks on her arm which look like faint bruising. All these are signs of increased Dermatomyositis activity. She’s been decreasing her steroid dose for a while now and now she’s been decreasing her weekly steroid bolus. Likewise her dose of IVIG (human immunoglobulin) has been decreased as well. That decreased plan has been aborted for now so she’ll get back on the previous dose and hopefully these new signs of trouble will go away soon. That’s about the last thing we need at this point is a new battle with her Dermatomyositis.

We’re still talking about going home soon, but this new potential problem will prevent expediting the transition of the Cellcept from IV to oral…still planning on Wednesday for that move.

3/18 Not Much Change

The days are blending together again with one day seeming just like the last. Still vomiting and dry heaves 15 or so times each day. Some really good moments each day, with as many really bad and painful times. There’s still the tummy pain which comes in waves. Physical therapy went great again to day biking around and a little walking. Another huge Josie-type four hour nap.

Deb and Evie and Josie had a Girls’ Night In last night. They kind of like that even though Josie gets totally bugged by just about anything her big sister does, but as it goes they enjoy their special girls’ time.

One change the GI Team thought might be a good idea is to start pumping Josie’s stomach overnight to help out. Usually, one’s stomach and bowel movements slow way down…this is a normal deal for everyone. Josie should certainly be no different, so they’re thinking that if it’s tummy juices doing the vomit trigger then if that juice is sucked out then there should be minimal vomiting – good thought. I, for one, do not think it’ll do much of anything, but we’ll see.

Saturday, March 17, 2007

3/17 Happy St. Patty’s Day

It was a day of green for the world, and for Josie O’Adams, she wasn’t just green from being nauseous, but she got into the spirit of St. Patrick’s day today being visited by a couple spirited clowns.

Even though Josie has vomited 16 times since 4:00AM, it seems better today and I think all would agree.

We’re getting closer to being out of there. Just a week more and Josie should be able to handle it on the outside…permanent-like! This is great news. Everyone says she’s doing really well, and we’d have to agree. Sure the sick feeling and vomiting episodes are a bummer, and sure she can barely walk a few steps, and sure she’s only eating three small bites of food each day, and indeed she’s still sick like crazy…but she’s better. And during the good times, she’s outstanding – really!

We’ve had her home before with much more going on than she has today so we as her nurses can surely handle the effort, the problem is that darn Cellcept again. We’d ideally like to see Josie get to transition her Cellcept from IV to oral. That way we don’t have to worry about making special trips and having the home-health folks drive it out to us every day which was a serious hassle for everyone. They did make those special trips before because it was a very short term deal, but who knows how long she’ll have to stay on it after we get home…therefore we kind of have to wait on that, or at the least knowing that she’d be off the IV stuff soon after leaving.

Josie’s blood work is looking pretty good. Her inflammatory markers are all looking very nice. Her hemoglobin is getting better. Her liver enzymes are still creeping every so slowly higher, but her bilirubin is slowly creeping down. Our biggest concern now is that her liver might cause her trouble somewhere down the road.

Her dermatomyositis is still smoldering in there but is in a pretty beaten-down state. As she weans off the drugs treating her disease we’re hopeful that her immune system will somehow kick in and get back to normal…but I think that’s wishful thinking.

Lots to work on, but we’re eyeballing the short-term and looking for the day what Josie will step out of that hospital for the last time…and that day is coming

3/17 Going Deep(er)

Today was another procedure day. This time Josie had a new jejunum tube inserted to replace the old one. This time it’s longer and heads further down into her jejunum (small intestine) right at about the jejunojejunostomy (the surgical junction of the two parts of her jejunum from Josie’s second surgery back in October). The idea was to get the emptying point of the tube past that junction but apparently the length of tube wasn’t long enough so they ended it there. Hopefully that’ll be good enough, but we’ll have to see. Josie needed to be under anesthesia for the procedure, and she was pretty excited about that because, see, they give her a few drugs going under and one of them makes her nose itchy, and then the next makes her “feel all fuzzy” and she kind of likes that…so getting ready for a procedure like this or even a major surgery isn’t so bad.

When she woke up she was all crazy…I mean hysterically crazy crying about bizarre things…just out of her mind hysterical. Well, she calmed herself down shortly after that and was back to normal by mid-afternoon. Deb and Josie went outside for a little run which Josie enjoyed despite the 35° weather out there.

She’s doing better…slowly better and we’re hopeful the new J-tube placement will help out.

Friday, March 16, 2007

3/25 Progress

Josie’s physical therapy is going great. The minor injuries sustained two weeks ago have gone away and she’s back to working hard and having fun with the girls. She was standing for over a half hour today working on some little projects and then was walking around with very little help. She came back and was super excited to show me how well she could walk!

The surgeons came in and were very happy to see that her vomiting has decreased a little. It’s certainly not gone…but she was up just a few times vomiting overnight and about a dozen episodes total over the last 24 hours. Much more of the day today was feeling much better. This is what the surgeons predicted…some good, some not so good, like running in sand or walking up a down escalator

During one of those good times the GI team stopped in and were real excited to see Josie smiling and laughing a little. She was also eating a few bites of Captain Crunch with milk. Josie wanted to make sure she took a bite in front of the GI docs to show them that she really can eat. It was pretty cute. They started Josie on Zelnorm which I talked about yesterday, and another drug called Misoprostol which she’s been on before to try to help move her guts along. They decided to stop the Reglan because it didn’t seem to have any effect on her vomiting. Still a little tweak here and there seeing if these little changes will help. There’s been less feed in her vomit which means most of the food is heading south so her feed rate was increased today too. All this is progress, slow progress, but progress It’s just a long waiting game, and wait we will.

Thursday, March 15, 2007

3/14 Still Tough

It’s still going, but not as well as we’d like. Then again, when is it as well as we'd like? Everything’s relative, and what Josie’s going through now is certainly not fun at all, but it could be a whole lot worse. Considering where Josie is now compared to November…we’re in good shape and need to look at it and accept it that way. She’ll get through this…uncomfortable as it is. We knew going into the big surgery a month ago that the road to recovery was to be a long one, but we want it all... and we want it all now. A little perspective sometimes is a good thing.

So Josie had an OK day but overnight was no beauty sleep as she was up at least 10 times. Still a fair amount of nausea and vomiting during the day but not quite as bad as the last few. There were many more times today when she was feeling better…gotta like that. And she even had some fun with her big sister, Evie, later in the day when she came to visit Josie and Mom. Nothing but fun with just the girls.

Josie started a new drug today called Zelnorm (you’ve seen the commercials with the people lifting their shirts showing their tummies with magic marker written on it). The drug will be used as a motility agent in Josie’s case. The ads say it for treating Irritable Bowel Syndrome. The drug acts like serotonin in the bowel ... serotonin causes the bowel muscles to move normally and get everything going. Once her system is moving at normal speed again she should be much better.

Josie’s been pooping several times each day which is great, but things aren’t perfect yet. More time and patience, and the great part about being unhealthy, you’re forced to have a lot of both even when you have none of either.

Wednesday, March 14, 2007

2/13 Nothing But Nausea

The broken record keeps skipping and is stuck on nausea. The cause of Josie’s nausea is still unknown and we’re continuing to try to figure it out. The most popular theory is that Josie’s stomach is not tolerating anything being in there. I’m not as convinced because there have been times when she’s had a full tummy and not been throwing up, and there’ve been other time when she’s been having her stomach pumped and the barfing continues…there’s really no clear pattern which is terribly frustrating. The GI service thinks that the receptors in her stomach are recognizing stuff in there and because it can’t move it along and out, the body’s reflex is to get rid of it…barf. They’ve decided to try a heavier dose of Reglan which is designed to help the stomach move stuff out. She’s had Reglan before with little success but not at this new dose level. GI’s thought it that if her stomach can empty that’ll stop the nausea.

This is a fine theory and certainly worth trying the Reglan super-dose, but it doesn’t quite add must be something different. I do agree that the nausea is a mechanical thing rather than a mental thing. Lots of things can cause nausea, chemotherapy as an example, and they make great drugs to combat these non-mechanical bouts of nausea. Zofran and other anti nausea drugs have been tried with Josie and have not worked, so that supports the idea that this is a mechanical problem. But Narcotics have been known to cause nausea too, and Josie has seen more narcotics in the last six months than Elvis or Rush Limbaugh combined…but Josie’s Loving Outsidenarcotic treatments have been weaned and will be completely discontinued (DC’d in hospital speak) after Wednesday (we should throw a party to celebrate that). So that kind of rules out drugs as the cause for the nausea. And that leaves mechanical plumbing problems.

Clearly Josie’s anatomy is not normal (read all about it in the October posts). Her stomach now has two exits: the ‘normal’ route exiting through the pylorus into the duodenum and off to the small intestine; and her new exit through the gastrojejunostomy (fancy word for intestine connected directly to the stomach) created in her October 18th surgery. Both these exit paths converge 15 or 20 centimeters downstream into the normal small intestine. Josie’s feeding tube goes down this new stomach exit and empties before the confluence of the two exit paths into the small intestine. We know Josie has been refluxing food back up the new route and the normal route. I think that this non-normal flow backwards along both paths and that part of the gut not flowing well is causing Josie’s body to say something is very wrong and…voila…retching….lots and lots of retching.

Josie is on the schedule for Friday to have a new J-tube placed further down the intestine past the junction of the two stomach exits. Hope it works. Josie’s thrown up more times over the last six months than Deb and me and the other kids combined (yes…including college), and it’s got to be getting old for her.

Again, physical therapy was a winner today. It was about the only part of the day when Josie felt OK. More walking and riding and walking and playing. Good news there. Then Josie and I headed off for another great walk outdoors in the record 66° heat this afternoon. Spring fever has hit Minneapolis! Maybe we can get Josie home before we have to mow the lawn which is only three or four weeks out.

Tuesday, March 13, 2007

3/12 More of the Same Again

Josie’s still nauseous much of the time. Overnights aren’t so good, then there’s a bit of a lull in the middle of the day, then as night comes so does more nausea. There’s just no definitive answer for it. It’s just a broken record, don’t know what’s the cause, but we should try some of this and a little of that, a little twist of that dial, a small pull on this knob, a little pump for that hose, clamp this drain a little, add a little of this, give that a bit of a break, make a little changes with things and see if it works.

I’ve got to hand it to the doctors here, they certainly don’t know what’s going on but they’re trying hard to figure out a solution. That’s a big frustration for lots of doctors we’re finding out, that so much of medicine is totally unknown even as advanced as medicine has become. Much of the time it’s simply unknown and the right answer is stumbled upon often rather than definitively known.

Josie’s gone back to steady feeding at a constant rate and allowing her stomach to drain by gravity two hours on then two hours off. So we’re back to tactics from a week ago…it seemed to be better then, not a lot better, but a little better (I think a little better (I think)).

At least her physical therapy is going well. Josie did a lot more walking today, much more than the last few days. She was standing for a long time then more walking and then a nice bike ride. It’s nice when she’s not feeling sick…she’s really enjoying physical therapy…and life in general…when she’s not feeling sick, which unfortunately is a lot less lately.

Monday, March 12, 2007

3/11 Holding Pattern

Josie’s sort of stuck in a place. A place where she’s suffering to a degree, but improving very slowly at the same time. This nausea problem is indeed, a problem which all involved are trying to solve. Last night was another doozie for vomiting…up at least 10 times and that continued throughout the morning. During the day and into the night she was better, but still having a good heave every now and then.

There seems to be no correlation between her bouts of nausea and her feedings or drug administration or necessarily the time if day. The nausea also seems unaffected by the big anti-nausea drugs she’s taking either. The consensus is that her feedings are somewhat to blame for the problem, however we’re in sort of a pickle here. She obviously needs a certain level of nutrition to maintain herself, but she can’t keep down the number of calories needed to sustain.

A contributing problem is might be the placement of her feeding tube. That feeding tube right now is heading down her jejunum (small intestine) but it’s not emptying in the optimal place. Currently it empties within the new limb of her intestine heading out of the bottom of the stomach but before the intersection with the rest of her bowel (the connection created by the second surgery back in October). They think that if they can get a longer tube in there to empty food further downstream of that connection point she may not reflux as much back into her stomach, and that may relieve her nausea and solve the calorie problem allowing more food to enter and be processed by her system. It’s a logical theory, relatively non invasive to procedure, and one certainly worth a try. She’ll likely get this new J-tube sometime early in the week.

To make things just a little more complex is Josie’s aversion to food. She just doesn’t want to eat anything. She’s got the green light to eat whatever she wants but nothing seems appealing to her, perhaps because of the constant nausea, or she really doesn’t feel hungry yet, or it might just be a mental issue too, or a combo. Not eating anything for six months straight as a four-year old might be relatively like not eating for five straight years for a 40-year old…then being asked to jump back in and eat as much as you can/want…there might be some mental interference issues…and Josie’s got ‘em…and we’re helping her work through ‘em.

Meanwhile, during the good parts of this day she was feeling good and chipper and sassy and pretty happy. Nice to see. She just needs to get this nutrition thing figured out, then the real recovery can begin.

Sunday, March 11, 2007

3/10 More of the Same

Some good, some bad. Last night was bad, but everything’s relative, right? Josie had a bad case of the barfs and retches again overnight, up at least twice each hour all night long. Things did get a little better around mid-day, but later in the evening the vomiting came back as did her tummy pain. It’s real frustrating watching her Lovely daycontinue with all the discomfort…again and again and again, but we’ve known she’ll ebb and flow during her recovery. As they’ve told us, we should expect her to feel serious tummy pain for another year or more as she ever so slowly improves closer to normal.

The surgeon was in this morning and we talked about her feeding and continued trouble with her guts and nausea. We discussed things a little and he suggested making a change to her feedings. Rather than feeding on a continuous flow we should try several spans throughout the day with increased pace which would better mimic meals and then turn off the food mimicking time between meals. So she’s now getting almost double feeding pace for four hours then two hours off, four on and two off, and on and on. Also, they decided to stop the draining of her stomach altogether. A while ago she was on suction continuously pumping her stomach, then last week she went to simple gravity to drain her stomach with no suction. So in a continued effort to challenge her system there will be no more stomach pumping or draining. We’ll see how that goes.

Josie’s physical therapy went great today. She stood for at least 10 minutes straight without a break and walked much more than yesterday with a lot less discomfort. This is great progress. After that we went for another great walk outside and enjoyed the 50° sunshine down by the Mississippi River. It was really nice being outside without being too chilled. Spring is in the air! When we got back she crashed for another Josie power nap for four hours.

Slow, slow pattern of improvement.

Friday, March 09, 2007

3/9 Progress

Another day much the same as the last. There was some more retching and vomiting, some more mild fevers, some good and happy moments and gnarly and miserable moments. The good ones are outdoing the bad ones regularly now.

The docs are still looking at Josie’s a little sideways trying to put their finger on the exact issues of the day. All are optimistic about better days ahead and all are still shaking their heads in amazement at how well Josie has done considering where she's been.

Physical Therapy went much better and Josie was even taking a few steps in the room without the PT girls there. Maybe this is a turning point in her muscular recovery (?).

Surgery was by and indicated that Josie can go home as soon as we're comfortable about caring for her at home indefinitely. We're sure game for some challenges, but do want to make certain the time is right. So we'll keep on trucking here until it's best not to, and then we'll take Josie home.

Thursday, March 08, 2007

3/8 Much Better

All that nausea has mostly passed. Today Josie only vomited three times, which is almost nothing compared to the 40+ times just two days ago. She’s tolerating all the new changes really well. Her fever has been pretty much held in check with just a couple times heading north of 100° in the last 24 hours.

The GI Team and Surgery are both pleased with Josie’s progress...and today Josie had three poops! Count ‘em up…three of ‘em. Those guts are starting to move along better, but still slow. She ate several bites of spaghetti and jello and cottage cheese today and we hope her appetite improves over the coming days. She has had a few bouts of tummy pain today and the GI docs say she’ll likely have tummy pain for at least the next year as her system settles into a state or normalcy during the very long recovery.

Her bilirubin, ALT and AST (all that liver business) are all still pretty high with no improvement over the last week. We should see some improvement in her bilirubin before the ALT and AST. Her liver will take months to calm down and heal after being beaten by the TPN over the last five months.

Dr. Vehe, Josie’s Rheumatologist, came to visit today and continues to enjoy Josie’s progress with her disease. There’s no sign of a flare up…everything is remaining in control! He’s going to order the steroids dropped again next week, and as soon as her gut is better move to oral Cellcept. The great news about having a feeding tube is that oral drugs go right in the tummy with no bad taste. The inflammation markers for her muscles continue to be low which is a great sign, but could be a bit of a false reading and not real accurate because of the state of her muscles. Those little muscles are so weak and atrophied that there’s little muscle mass to generate any of the markers they look for if there’s indeed a problem brewing.

Josie’s day was a busy one. Physical Therapy came by for some good workouts. Her strength is so low now, she can barely stand. She needs help walking and last week’s little crash with injury had rattled her confidence so she’s nervous about any kind of walking. We’ll work on that though. Afterwards she hopped on the bike for a quick spin around the floor. All the nurses love to see her cruising around on that little bike.

After that we headed out for another walk around campus here at the University of Minnesota. The snow was melting and spring is in the air. Shortly after we returned Deb and the other kids showed up for a fun-filled evening. Josie was able to leave the hospital for the second time today so we could walk down the street and have a nice meal together at a local restaurant. I can’t remember the last time we were all together for a meal…it was pretty sweet.

Things are improving, but still far from perfect.

3/7 Better

All that nausea has simmered down but still not gone. Another fairly barfy day here on 5B…but not as bad as yesterday.

Dr. AdamsHer antibiotics have been stopped (well…not totally – see she’s still got to be on this anti-fungal called Fluconazole, and a prophylactic (guarding against infection) dose of Bactrim (antibiotic)…but the big-guns have been halted). They also stopped the suction of her G-Tube (gastro) so he stomach is no longer being pumped. They attached a bag to that G-tube so it will just drain to gravity. The thought is that with more goop staying in the stomach that may make her gastric motility better and get the ball rolling. In fact that’s what the main focus in life is here and now.

Josie even had some food today. A couple bites of cottage cheese and a couple bites of spaghetti. She’s got the green light to eat just about anything she wants. She’s now totally off the TPN IV nutrition. Having the TPN out of her system will help that liver of hers tremendously. If it’s really quiet in the room I’m certain I can hear the little cheers coming from that liver. Now that the TPN has been stopped she should be getting nice and hungry over the next couple days. That will likely lead to more eating (we like eating) and that may lead to better GI health. That’s the goal (did I mention that yet?).

Josie dressed up as a surgeon and was chatting up the real surgeons when they came in entertaining them totally. I think she wants to become a surgeon when she grows up…either that or a Veterinarian like her mom. When asked what she wants to be she says “…I wanna be a Doctor and a Mom and a Duck…” We’ll see how that works out.

Tuesday, March 06, 2007

3/6 A Day To Forget

One word sums up this day – Nausea. It started last night late when Josie had a couple retching episodes. That spilled over into the night and she was up vomiting and retching at least once each hour, continuing all day long today. She was feeling so cruddy the whole day there was barely any enjoyment the entire time, and even tonight things are still no better. It was a day to forget for sure.

The GI Team was in, as well as the Surgical Team. No one liked to see Josie like this…all were watching her retch with frowned brows trying to think of what could be causing this new condition. No answers, just a consensus that it should pass and we’ll just have to wait it out.

Surgery thinks the time is now time to jump start the gut and stop the IV TPN nutrition altogether. They’re very concerned, as are we, about her liver. We’ve been talking about the liver being a problem for a very long time and now everyone’s nervous about that liver’s ability to recover after being beaten upon for so long. This afternoon, evening and throughout tomorrow Josie will be weaned off the TPN. This will hopefully make her a bit hungrier and might even make her guts move things along better and more efficiently. Josie is nice and plump these days and can withstand a crash diet, taking in just about 25-30% of her normal calories for a while. He body should recognize that it needs more nutrition and hopefully try to get that form her guts rather than fat stores in her body.

Infectious Disease came in to talk about Josie going off the antibiotics as a plan. They don’t like that plan much. They’d rather keep up with the antibiotic course for a few more days based on the positive culture from the other day. They’ve still not isolated that specific bug so we’re uncertain exactly what might be the best defense anyway. ID said they’d go along with the off-antibiotics plan but were at the ready if things head south with a possible infection…that along with a big fat “I Told Ya’ So!”.

Yesterday they performed an ultrasound to check for abscesses as a precautionary measure because of the higher fevers and the bacteria growth. Of course Josie was a start during the procedure. The results came back as normal with no sign of an abscess. Good news.

We’re really hoping this new nausea thing today is temporary because the girl is totally miserable.

3/5 Infections Questions

Those pesky bugs. Of course the Infectious Disease people are all about eradicating the bugs (bacteria) and that means antibiotics, of course. Well, that’s fine and good and is the right thing most of the time, but in Josie’s bizarre case it might be wise to step back just a bit. By that I’m talking about perhaps not treating the bug at all so we can know truly what we’re dealing with. Feelin' GoodThe culture from the other day which grew out with gram negative rods (bacteria) was from just one of the ports on her dual-port Hickman line. We would expect bacteria to grow out of cultures from both ports if her blood was really infected, but the protocol is to treat if there’s a positive culture…so they do. The idea of stopping her antibiotics was brought up by the Gastroenterology (GI) team. The thought behind this is that Josie has had such a long history of fevers and positive cultures and antibiotic treatment, but there’s no real definitive picture of what’s going on from an infection standpoint. Surgery is on board with this idea too so we may just stop the antibiotics and keep culturing every day to see what happens.

She’s pooping more now! It’s been daily for the last three days and today it was twice. She’s still having tummy pains and we’re not exactly sure why, but it’s certainly uncomfy for her. Her liver is still big causing some serious abdominal distension. She still vomiting several times each day. But she’s getting better, the ol’ three-steps-forward-two-steps-back thing…except with Josie it’s more like 15 forward and 14 back…positive progress but S – L – O - W.

Physical Therapy went great today. Josie was in a super mood and once again was screaming around the floor on the bike. She’s a crazy woman…look out Danika! She’s still not walking much because of her sore leg, but that’s getting better as is her arm. She’s becoming very proud of how high she can lift the bum arm now, proving to us she’s getting better.

Sunday, March 04, 2007

3/4 Bacteria

Josie’s brother, Henry, hung out with her much of the day today. They, along with Deb had a great time…played games, laughed a lot, went for a walk…you know…family stuff. We’d just like these types of days to happen at home instead of at the hospital. Henry had fun and Josie had fun having her brother around for fun.

Her arm and leg are still hurt’n but not quite as bad so those are on their way to goodness again. Physical therapy went well, but she wasn’t into the whole walking thing much. She did hop on her bike and cruised around the floor, not quite as crazy as a couple days ago but she still got out there. Then the three of them (Josie, Henry and Deb) headed outside for a joyous late-winter stroll...sunny, blue skies, temps in the mid 30s...spring in in the air!

She was running some higher fevers 101.3° and 101.4°this morning and afternoon so they drew some blood cultures. One of the cultures from the other day grew out some gram negative rods (bacteria). Of course this isn’t a good thing so they started her up on Tobramycin, a new antibiotic for Josie, to combat the bacteria. Hopefully this bacteria can be cleared up quickly, but of course with any kind of blood infection, any foreign body, like a hickman line or a PICC, can easily get colonized with a slimy bacteria film which is almost impossible to irradicate and it keeps reinfecting the person. If that's the case then the brand spankin new Hickman line may need to be removed. This is just a possibility though. We surely would not want to lose her new Hickman.

This afternoon and evening Josie took her daily six hour nap. She’s now awake and ready for some fun and games well into the night.

Saturday, March 03, 2007

3/3 A Good Day

It was a fine day at the hospital. Josie’s injured leg and arm are not broken or dislocated according to the x-ray films…this is really good. There's either a bruise or some kind of pulled muscle causing the pain and limiting movement. Josie’s been complaining of pain in the leg and arm continually since the accident two days ago. Time will heal things up, but unfortuinately it will make the physical therapy a bit more challenging as her limbs heal.

We have more poop! That’s two days in a row now for the movement. Things are slowly creeping along and that’s just great news. The surgeon was in today and thought the same…everything is looking good. I’d say we’re closing in on setting a go-home date though that talk has still not really been bantered about. My bet is between two and three weeks from now…before April 1.

Dr. Vehe came in and was still marveling at how great Josie’s skin and overall condition is. He decided to drop her daily steroid dose down to a miniscule 2 mg/day. He also talked to us about dropping her dose of weekly IVIG (human immunoglobulin) and even moving her weekly steroid bolus to every two weeks rather than ever week like it's been for a long time now, but that won’t happen for a while yet. We’re taking baby step on the disease-medication wean. As her dermatomyositis remains in check, slowly tapering the drugs can then strengthen her immune system and the hope is that everything will be in harmony within that little body of hers.

Not a bad day at all.

Friday, March 02, 2007

3/2 Injury

Bed HeadToday has been one of gingerly moving around with not too much activity. Yesterday’s injury during physical therapy is still a problem. Here's what happened...Josie was walking along and her left knee bent just a little too far for her weakened muscles and collapsed. It seems as though her ankle turned and rolled inward a bit. She of course screamed bloody murder at that whole thing, but after a few moments she gave it another college try. On the second step with that left leg it collapsed again and this time I was holding her hands for support, so when she collapsed her arms straightened out and caused some stress on the rapidly extending left arm. I felt a little pop…you know, the kind of pop or crack you get sometimes in a knee or elbow…no biggie, right (maybe that’s just my creaky bones which do that)? Anyway, she complained about the arm hurting too and that was the end of the physical therapy session.

Today Josie woke up complaining of arm and leg pain -- great…just perfect. That’s all we need now is some kind of crazy injury. Well, here we go…as long as we’re in the hospital let’s get an x-ray to rule out a Grumpy and Coldbreak. The results aren’t in yet on the films and I’m pretty sure there’s no break or dislocation, but you never know…what, with the medications she’s been on and the steroids and her minimized strength, those bones and joints are weak. For sure there’s some kind of injury which will likely prevent much exercise over the coming days or longer.

Josie’s labs haven’t moved too much lately. Hemoglobin is low but stable so she’s producing new red blood cells pretty well. Liver enzymes, ALT and AST, are still elevated but stable. Bilirubin is still high but stable. So things are…well…pretty much stable but not optimal. There’s some yeast and bugs which grew out of the duodenal tube drainage from a couple days ago. Infectious disease isn't too concerned as it may very well be a function of her normal gut flora. They’re going to maintain the regimen of antibiotics and antifungals. A little later they’re likely going to use some probiotics (beneficial bacteria and yeast) to combat some of the funky bugs in there to even things out.

We had lots of doctor visits today. Dr. Vehe (Rheumatologist) was in and is very impressed with her Dermatomyositis progress. Her nail-fold capillaries are looking great as is her skin and eyes. She’s looking really wonderful and it seems as though this disease is becoming less and less active. This is great progress from several months ago and she's looking better than she’s ever looked since diagnosed back in July 2005. The battle Josie is waging now is with her guts and liver and strength, all serious complications of the Dermatomyositis.

Day at the Museum
So what the heck is Josie doing in a chicken coop? This is a real photograph of Josie admiring a huge wall-sized mural at a museum here at the University of Minnesota during a walk this afternoon. Then on the way back it started snowing and she was pretty grumpy and snowy by the time we got back (above)…funny.

Soon after we returned from our walk Josie had her first poop in over two days…slow, slow progress, but progress on the gut front (I think). She finished up the day with a now-regular six-hour Josie power nap.

Thursday, March 01, 2007

3/1 Snow!

Things are going well. Josie’s gut motility is still slow…we’ve had no poop today…once again, we’ve had noooooo poop today! Everyone’s still a little concerned, but the tests have shown there is no blockage anywhere so it’s still just a matter of waiting it out…waiting for that bowel to wake itself up.

That’s really what we’re waiting on. There’s been a hint of chatter about going home again…this for good this time. It’s still a little too early to set some timelines but it’s getting closer. She’s still on the TPN IV food and tube feeds for all her nutrition. As soon as the gut gets moving then the tube feeds can get up to speed, then the hope is that the stomach will then begin emptying like normal so the tummy suction can be turned off, then she can start eating more and the TPN IV food can stop, then she can start eating food and slowly progress to normal eating again. That whole process might take a while but in order to go home those guts need to be moving.

Today it’s been all about the snow. It’s been falling all day and Josie just couldn’t take it anymore watching it fall from inside…she just had to go outside for a snowy play day. We got her all unhooked and headed out for another great walk just like last week. Except this time she had to get out and make a perfect little snow angel. You gotta love late-winter snow storms.

After a half hour of play we headed back in for some physical therapy when Josie hopped on that bike again and was just tearing around the halls again. This has become one of her favorite things to do. -Now she’s getting strong enough to race us and chase us around. After we did a little walking and other exercises. During the last walk she was caught with her leg just a little too bent and it buckled pretty bad and she collapsed to the floor. She was taken by surprise and since has been complaining about some leg pain. Hopefully there been no real damage (no swelling or anything like that) but you never know…that type of thing can happen at any time with her strength being and weak as it is… I guess that’s a risk which is always there.

2/28 Six Months

What a difference a day can make.

Late last night Josie had her latest retching episode and I think that was the turning point. She let Deb know it was coming and then let ‘er rip. That diaper was full and stinky to most…but it smelled like buttermilk to us. Josie pooped a dandy one and again this morning helping relieve the building angst over the last week regarding those guts of hers. Of course that was great news, and on top of that her other vitals have been much better. Her fever has been gone for a while only creeping back occasionally and slightly. Her heart rate has dropped to the 140s and she’s overall feeling better. This morning Josie gave me a wake-up call at home and said “…Daddy…Guess what?” “What.” And in a high-pitched excited voice she said “I POOPED!” She’s still flowing slow but is moving stuff through. Patience, patience, patience and more patience.

The infectious Disease docs were in and were pleased with Josie’s progress. They like the direction Josie has turned and think the current antibiotic course is doing its job based on the change in Josie’s fever and other symptoms from a few days ago. She’ll stay on this current cocktail for the next two weeks and by then, hopefully she’ll be doing well enough to remove those antibiotics.

Then the surgeons came in to check her out. They that she was doing well enough they thought now was a good time to take out the last drain. She watched as the Doc slid that JP drain out of her tummy. This is the first time she’s been without a JP drain since late September. How’s that for progress? In addition the surgeons removed the collection bags from the duodenal and the pancreatic tubes. These were both capped and will remain that way for the next 6 to 10 weeks.

There was some fun today with a little car ride and some sassy talk. Shortly after all that hubub there was another snooze - Josie Style. A six-hour power nap

Today marks the six month anniversary of Josie’s admission to the hospital. It’s hard to believe we’ve all been here that long with just two very short home visits. The good news now is that Josie is heading in the right direction again and home seems to be peeking itself into that light we’re now seeing at the end of the tunnel. Not sure when it’ll happen but it should be sooner rather than later, and we like that just fine.