Just a quick update. We are home and are halfway through our very first week of dialysis "without a net." So far, so good- we seem to have overcome the whole "alarm every five minutes" issue that we had in the hospital. The biggest adjustment so far has been for Little Pom, getting used to being in bed at 9:00 exactly. I have to say, I haven't been particularly pleasant this week since it seems like our whole lives revolve around the dialysis process. I've never been one who's good at routine...I really, really need the flexibility to run out and pick up carryout for dinner or to spontaneously go to the late show movie. But that's not possible anymore. Everything is regulated, measured, ordered and pre-determined and I'm (doing it but) MISERABLE. We have not missed a dosage, a blood pressure screen, a deadline or a dietary restriction. We're doing everything right, but it's so contrary to my nature that I'm struggling to adapt. I don't even know what I'll do when Daddy goes on deployment next. I think we're going to ask for a prescription for respite care, and I'm doing some research to find out if there's a way to find dialysis-trained babysitters. I doubt it though.LP is doing okay, although he's absolutely impossible in the mornings. The PD makes his shoulder hurt (the catheter can pinch a nerve that is felt in the shoulder) and his tummy ache. Which makes him really, super difficult to deal with in the mornings. Yay. On the bright side, I've built a website specifically designed to be an easy-to-remember place to get information on living kidney donation for him, so please pass along this website to your friends, family, contacts & elists: www.kidneykid.com On an even brighter side, here's a kitten in a frog costume:
I don't attend the Tennessee Valley Unitarian Church. But I have been a Unitarian Universalist for many, many years now and I have to say, the incident yesterday has hit me really hard. I cannot imagine the feelings of those congregants today and honestly, am thankful that my family and my church has NOT experienced such horror. But even as I recognize that I can in no way understand their feelings this morning; it is also clear that I stand with them, reeling from the idea that anyone could possibly see our faith- mirrored through our lives & actions- as something so personally offensive that they feel the need to erase it's very existance. I may not be able to relate to the trauma of this momentary burst of violence...but I certainly feel the pain of realizing that he wanted us dead. Surely in this, I, like every UU around the world, stand with the Tenessee Valley congregation. Their pain, their grief, their sorrow is theirs and mine and every Unitarian Universalists. And likewise, the hatred directed at them belongs to all of us as well. Thus, as a Unitarian Universalist, let me take a moment to speak out about Jim Adkisson, the man pulling the trigger whose stated objective was to kill as many people- people like me- as he could before the police took him down. Tennessee is a death penalty state, and as someone who is charged with first degree murder (so far), Mr. Adkisson is most likely going to be facing a capital trial. It is my hope that the prosecutor eventually assigned to his case would not pursue such a path in this case however. The Unitarian Universalist church stands opposed to capital punishment, and I believe that it would be wrong for the State of Tennessee to avenge the deaths of Linda Kraeger and Greg McKendry in a way that runs counter to everything they affirmed during their lives. Namely:The inherent worth and dignity of every person; Justice, equity and compassion in human relations;
Acceptance of one another and encouragement to spiritual growth in our congregations;
A free and responsible search for truth and meaning;
The right of conscience and the use of the democratic process within our congregations and in society at large;
The goal of world community with peace, liberty, and justice for all;
Respect for the interdependent web of all existence of which we are a part.Mr. Adkisson, even as the perpetrator of this horrific act of terror is a person of worth, deserving of dignity. Making this statement, at such a time, after such a heinous act against my fellow Unitarian Universalists is NOT easy. It may even seem foolish or naive, but that fact is that we cannot embrace the light of Unitarian Universalism only when it is convenient or easy to do. We ALL have worth, or none do. And this statement must be consistantly true, even when we have been injured beyond all comprehension. Likewise, we must affirm that all persons are deserving of justice, equity and compassion- which in this case, I believe means a fair and fast trial for Mr. Adkisson, so that his victims may have the justice they deserve. Perhaps, after Mr. Adkissons inevitable incarceration, and after the Unitarian Universalist Trauma Response Ministry has worked with the TVUU members, they can engage in some form of Balanced & Restorative Justice program that would bring the offender and his victims together, to understand the nature of his actions, to demonstrate love even in the face of hatred & despair, to reconcile and to heal. Even now, the members of the TVUU church believe (as do all UUs, even after this) that we are all connected and that what happens to one impacts us all. This means that our faith calls us to reach our to our offender and to demonstrate our living creed, before our tears have yet dried. I affirm their stance as a liberal congregation of faith and healing and believe that, when their pain subsides (knowing it will never vanish completely) that they will extend a hand of compassion even to Mr. Adkisson and demonstrate to him a spirit of life that he was unable to see before. And so today, I light a (virtual) candle of sorrow and of hope. Grief for my brothers and sisters in Tennessee. Anger at Mr. Adkisson, even as I understand how frightening and angry being unemployed for a long period of time can be; and hope for the future- hope that the TVUU can build from this tragedy and bring out of their fear and grief and rage a renewed spirit for social justice, peace and healing. May the light of our collective candles shine into the darkness of isolation, of incarceration, of anger and of pain, in order to serve as a beacon of forgiveness and compassion eminating from the chalice of the Tennessee Valley church. 
Sure, that could happen, even on Death Row. But shouldn't we give the Tennessee Valley Unitarian Universalist church as much time as possible with Mr. Adkisson? Say, the rest of his natural life?
Thanks to everyone who's gotten in touch with us to ask what Little Pom needs at the moment. We are filled to the brim with toys, games, cards, flowers & balloons and he sends a big THANK YOU to everyone who's been so thoughtful in the past few weeks. Most of the furniture/bedding needs have also been met, so we're good there as well. So, for those of you still wondering how you can be of help, there are two ways:1) Little Pom's dietician turned us on to this stuff called Dairy Delicious (www.dairydelicious). It's kidney-friendly dairy products & LP is in love with their milk & their cheese sauce. He's been so happy here because he's been able to have mac & cheese, nachos and milk to drink again. It's hard to find, although it can be ordered through the company; so we're kinda asking that anyone who's wanting to help us out either order LP some Dairy Delicious products or else contribute $ towards our own orders so we can order more at once & save on shipping. It's roughly $25-30 for either a case of their milk cartons or a case of their cheese sauce cups. Personally, I think their mac & cheese is overpriced & would rather have more of the sauce cups that I can just add to plain pasta.2) If you have type A or O blood and would like to learn more about the opportunity to be a living kidney donor, let me know and I'll send you the information. We had our meeting with the pre-transplant coordinator today and they can officially start screening candidates for LP's eventual (hopefully sooner rather than later!) transplant. So there you have it, LP's two needs at the moment: dairy products and organs, LOL.Daddy says I HAVE to post here (against my better judgement) that I've missed 3 weeks of work & we've been paying tons of $$ in gas going to and from the hospital, as well as meals here, etc. Currently our home phone & internet as well as *my* cell phone is shut off. We can live without any of it, of course, but if anyone would like to contribute to a "Getting the Pomegranate Family Back on Track" fund, Daddy says he wouldn't turn you away, LOL.But as for me and my Little Pom: Dairy Delicious & a Kidney is all we need. :-)Thanks everyone, for everything. Really.
Well, Daddy & the Dancing Queen are at home, getting ready for Little Poms arrival. They've switched out the bedrooms & are assembling new furniture & putting the new spaces together. The Dancing Queen was (understandably) sad to have to give up her room, so we got her new wall art, sheets & accessories to re-vamp her new space. Now, it's very sophisticated: urban prep with Audrey Hepburn inspired retro accessories. Little Pom has decreed that his space shall have a pirate theme, so it's a good thing we got him a Captains Bed! I've found some super-cheap & fun piratey accessories (thanks eBay! thanks etsy!)- nothing cost more than $10 including shipping- to dress it up, and we used some of our church funds to get him cool bedding. He picked out sheets that have a cartoon version of the Pirates of the Caribbean characters & then I added a cream, brown & blue striped comforter to match. ETD is sometime tomorrow. They're starting LP on a medication (similar to Flomax) intended for prostate patients, that mgith help eliminate his need for a catheter. Keep your fingers crossed for us. I desperately want it to work, but I'm also unwilling to get my hopes up because it seems like NOTHING has gone easily for us through this process. If this works, it would be an absolute miracle. Otherwise, the Urology nurse came in and talked to Little Pom about the idea of catherizing himself several times a day. The idea was not met with the horror and outrage I expected. But she did get to meet LP's stubborn side. The side that says "No thanks, I'd rather give up Karate then d that." So, we'll see how it goes.
Okay, it's 12:30 in the morning & I'm exhausted, so here's the super-short update on my brief lapse into hopelessness yesterday:1) Furniture situation is resolved, with much thanks to our church & family in Missouri. 2) Our insurance company is dealing with the Semi company's insurance. They are filing a mini-tort claim on our behalf and (for some reason) sending us a check for $64.00.3) My favorite of Little Pom's three nephrologists mentioned today that he and LP's Urological surgeon were discussing trying a medication on LP that may delay (or even eliminate!) the need for the Mitrofanoff procedure. I'm scared to be too hopeful, since everything seems to be progressing so rapidly, but seriously....my kidlet needs to be cut a break already! And I've always been too stupid to stop hoping, LOL.4) We are 1/2 way through Little Pom's nightly dialysis and....so far, so good! Every evening he experiences a brief period of pain. Pain strong enough to make him cry...but he only gives it a 4 on a scale of 1 to 10. Thankfully, tylenol, a warm pack & an ice pack all together seem to help. He's sleeping (finally!) and we haven't had an alarm beep yet. Keep your fingers crossed for us. :-) It seems like Scarlett was right. "Tomorrow is another day."
Okay, so I think I've officially reached my breaking point. I'll start with the really good news, so as not to appear ungrateful. I am really, truly, so very thankful for the blessings we have recieved in recent weeks- first and foremost the fact that my parents got us a new car! It's a PT Cruiser and is big enough to handle all four of us *and* Little Pom's dialysis equipment and supplies. My father in law is picking it up in Milwaukee for us tomorrow. I can't even begin to say how grateful I am for everything our family has done for us these past few weeks. So, please don't take the rest of this post as ingratitude...it's just venting. Today, we started our training for the PD dialysis. It's fairly simple, but it's still sooooo overwhelming. We had to sign a form saying that we understood that failure to do it, and do it right, might result in Little Pom's death. O.M.G. There is no bigger feeling than the understanding that your childs life is-quite literally- in your hands. One mistake, and he's exposed to potentially life-threatening infections or other conditions. I have to say, I was kinda in a daze throughout the training after that. I paid attention. I learned the steps involved in setting him up....but it's all soooooo scary. After that , the instructor and I were talking briefly about the Mitrofanoff Catheter that LP will have put in in a few weeks. This is the permanant, internal catheter that takes him off of the Foley Cath. It's necessary, I know, because his bladder is still retaining fluid and that interfere's with the dialysis process. But 1) it's different than I was picturing it in terms of appearance & process and 2) it's something he'll very likely have for the rest of his life. My heart is breaking. I GET that things could be worse. I GET that his condition is "curable" with a transplant and that someday, hopefully soon, he'll be able to lead a mostly-normal, healthy life. Which I think is why the idea of the catheter forever gets to me. Here's a picture of the Mitrofanoff Catheter...keep in mind, it's so very different than I had expected and sooooo (again) overwhelming & (I'll admit it) slightly horrifying to me:
When they had explained it to me, they said that the incision would be in LP's belly button, so hopefully, it won't even show. His little belly button is already kinda deformed from the PD catheter- it looks "closed"...like a horizontal slit or fold, not a round bump or divot now. I had been picturing a port or valve that he connected the cath tubing to and drained from. Instead, he has to literally feed the catheter tubing down into his abdomen several times a day to drain his bladder, so that his dialysis will be successful. For some reason, this really, really gets to me.So....we have 1) Overwhelming generosity2) Overwhelming responsibility3) Overwhelming treatment methodsI've been barely holding it together today. Daddy & I were at each others throats last night (to be fair...I was RIGHT and he was wrong) and barely spoke to each other today. Then, I left to go to the bank & get dinner. Coming back to the hospital, I was stuck in a HUGE traffic jam, because of a fatal car accident a few miles up the road. I looked in my rear view mirror just in time to see a Semi Truck slowing rolling towards me and not stopping. I took my foot off the brake & moved my car up as far as I could, but the vehicle ahead of me was at a stand-still and I didn't have much room. Long story short: I WAS REAR-ENDED BY A SEMI TONIGHT!The driver admitted that it was his fault. In fact, he told me flat-out that he had forgotten to set his brakes while he went to reach for something he'd put in his microwave. He put two good-sized holes in my bumper...but thank goodness he wasn't going faster or I'd be dead right now. I don't care about the damage to my car. I just really don't need one more thing to deal with right now. We have 48 hours to switch LP's bedroom with the Dancing Queens, come up with the money to purchase his new bed and mattress, learn how to do dialysis without killing my kidlet and now....we get to add dealing with insurance companies to the list. I am officially DONE. Update on the furniture front: we've contacted every nonprofit and advocacy group we can think of, including our own military Family Support unit. No one can help us come up with the furniture funds in time, and our families have already been so generous that I wouldn't in a million YEARS dream of (or really be able to) ask them. So, that's more stress. The "where will we put all of LP's medical supplies and equipment when we get home" stress. There's a LOT of stuff- big, bulky stuff that they give us in month-at-a-time kits. So that's 30 ten-pound bags of dialysis fluid, 30 tubing kits, tons of betadine locks, sterile caps, surgical masks, etc. Not to mention the machine itself. I figure that conservatively, I need to come up with $600-750 in the next 2 days, in order to equip ourselves properly to do this. But now that I need a new bumper for my car, I'm thinking that won't be happening. I'm exhausted. I'm overwhelmed. I'm scared. I'm stinky. I'm going to bed.Sob.
Okay, first of all- Bubbles went home yesterday. His stepmom and some other woman came to pick him up & we managed to exchange contact info with them. So now we have parent names, home address & phone and Bubbles birthday. You know, to stay in touch and whatever else we may need it for. The stepmom was telling us all about how she can't ever visit him because she works 3rd shift. I had to bite my tongue from pointing out that this should make it *easier* because she's awake when the kids are out of school. But I didn't want to seem hostile. She also said that his dad slipped & broke his ankle yesterday "on the way here to visit." It was awfully convenient timing, and didn't really explain where they've been the REST of the week. But, Bubbles got dressed, gave us hugs and rode off into the sunset in his little blue hospital wagon. We did have one little moment where I'd asked him "are you happy you're going home?" And his little eyes welled up and he shook his head no. Then he saw his stepmom looking at him and started nodding instead. It broke my heart. Little Pom cried himself to sleep last night because he missed Bubbles. LP had a busy day yesterday too. We've started dialysis and it seems to work pretty well (Important kidney number was 3.6 last they told us)...but that's WHEN it works. We've been having issues with the drainage part of the process. Basically, the dialysis machine is supposed to fill LP's abdominal cavity with sterile fluid, let it sit for a certain amount of time, drain the fluid out and repeat. This should happen quite a number of times over the course of 10 hours, depending upon the "dwell time" (the sit time) that the doctors decide on. For Little Pom the first two phases go fine, but we've been having issues every, single night when it comes to draining the fluid back out. Yesterday, they did an x-ray to confirm that the PD catheter was placed correctly- it is. Then they did a renal ultrasound to see if that gave them any info. His bladder (without the catheter, remember) is retaining fluid again- about 1/2 a liter- and the thought was that it might be putting pressure on the PD catheter and not allowing it to work properly. So, last night LP had another Folely Catheter put in. They have him a tiny bit of morphine and a great deal of Versed but he was awake & screaming the whole time. On the bright side, Daddy says it was still the easiest of the (now 4 or 5, I've lost count) catheter insertions. So, the kidlet has a tube coming out of his abdomen and a tube coming out of his penis. Daddy says that the Urology surgeons were in briefly this morning & we might end up doing the Mitrofinoff (sp?) Catheter after all. That's the permanant one that drains through the belly button. But we don't really know yet, because even with the foley in, the dialysis fluid last night still wasn't draining well. So....we have a mystery wrapped in an enigma, shrouded in the form of an eight year old boy. Eventually, I'm sure dialysis will be a wonderful thing for us. But we gotta figure out how to make it work first. More later.
Little Pom's third night of dialysis went well. I went home, so that means it went swimmingly for me, LOL. Daddy stayed the night and from what the nurse said, it was MUCH better than last night. The machine still went off several times, but at least this time there was no pain and screaming on LP's part. More good news: his "Important Kidney Number" is down to 3.6. This is AWESOME, since last time it took us a week to get him down to 3.4 and here we are, only 3 days into dialysis and seeing such good results. Little Pom's tummy is healing nicely, although he is still sore & tender and doesn't have an appetite. He says it hurts to eat. :-( His blood culture came back positive, so they have him on antibiotics for a slight infection, but he's not feverish and it seems to be no big deal. He won a little radio today on Bingo Friday.
Bubbles isn't doing as well. He's in surgery again as I type. It took them hours to get ahold of his parents to give oral consent for the procedure, since they are never here and don't answer their phones. One of the housekeepers told me that they would never give up custody of Bubbles, because they use his SSI and other benefit money to fund their own lifestyles. Aparently, Bubble's father recently bought a new car. Bastard. On the bright side, I'm pretty sure that's fraud so it would be fun, fun, FUN to turn the jerk in. Defrauding the government *and* medical neglect....surely a candidate for Father of the Year. Last night, the Dancing Queen had her head on my shoulder and Bubbles shouted "HEY! Stop touching my momma!" This SUCKS because he's gotten so attached to us, and I don't want to cause him any additional trauma when we leave. When DQ and I went to go home, Bubbles said "Where you goin'?" We told him that were going home and he said "I go home with you. I go too." It broke our hearts to leave...especially since one of the nurses told us that he's the happiest they've ever seen him with us here and that she thinks HE thinks he's going home with us."
So....add a new name to the prayer chains! Just use Bubbles when you do though...God knows who we mean, LOL.
If you work here:- Don't as a child "is it okay if I do this" if you have to do it no matter what they say. - The minute you leave the room, my child WILL poop.If you are being treated here:- Sleep. Wherever, whenever and for however long you can.- If they give your child a laxative, it's helpful to already be wearing brown clothes.What we've done so far today:8 pills6 poops (in a bedpan)2 blood draws1 pukeand a beep- and squeal filled night.And it's only 2 PM.
Okay, I'm really sorry for swearing (Nana, if you're reading this, trust me- no other term is strong enough!) but Bubbles desperately wants to go to the playroom for the music therapy group. He's basically in a cage (metal crib w. a plastic top on it) 24/7 and apparently his family has requested that he NOT be allowed to go to the playroom!! So.....-Don't Visit- Don't Stay with him for Surgery- Don't bring him ANYTHING from homeAnd then, deny him what little opportunity there is for enjoyment here for someone his age. I'm sorry...but they're assholes.
We had a ROUGH night last night. Little Pom was (sorry for the TMI) really constipated & in a lot of pain. He kept crying & begging for lidocaine for his "privates"....which would've done nothing, but it's all he knew from last time. Pain in the pelvis=lidocaine on the privates. He had a fever too and was crying, shaking, teeth chattering....awful! The night nurse (whom I'm pretty sure was a few bulbs short a chandelier) was FIXATED on the lidocaine and kept asking me to describe it....explain where we got it...tell what we used it for...explain who prescribed it....over & over again. THen, she'd go and ask the doctor on call for more of it, even though it would do NOTHING for the type of pain he was currently experiencing. Seriously. You paid a fortune for Nursing School. Don't take your medical advice from an eight year old. Eventually we got a tylenol into LP and he settled down. Except the alarm on the PD system kept going off, pretty much every 10 minutes, all night long. So, it would wake the boy up. I'd get up and re-set it. We'd both drift off to sleep and.....super-crazy-loud beeps again. We eventually fell asleep around 4 am. Which was when Nurse Chandelier decided to wake him up & give him some medication. He & I are both sooooooo overtired today and I'm concerned that tomorrow night isn't going to be any easier. Ugh. On the bright side, I found an AWESOME bed for Little Pom that keeps him at a decent height for the PD to drain at night *and* has tons of storage space for all the bags of solution & other supplies we need. Check it out:
Update on Bubbles:Bubbles is out of ICU and back with us. It breaks my heart though, because one of the nurses mentioned off-hand that she thinks he thinks he's going home with us. I've been here for four days and have yet to see ANYONE from his family. Although we do get some indications of what home might be like, when he shakes his fist and us and mimics muttering under his breath when he's annoyed with someone. We gave him two stuffed puppies and he spends equal amounts of time cuddling them & making them fight with each other. Oh, and apparently he had quite a blue vocabulary when he got here. I wish we could take him home. I think that we'll do our best to stay in touch with him though, because we can call the hospital after we leave & if he's here, come and visit. We can't keep him, but we can try really hard to show him that someone cares about him....other than the medical staff, who dote on him whenever they have the time. :-( As promised, here are some pics of our Bubbles:
(the colorful puppy by his shoulder is one we brought him)Hopefully today should be fairly relaxed: meds, water and catching up on our sleep. LP is zonked right now and I want him to stay that way as long as possible. :-)
Well, after going 22 hours without food or drink, Little Pom *finally* was taken to the Pre-Op at around 5:00 tonight. Of course, they took him within an hour of my leaving the hospital for the first time since we got here. :-( But, Daddy was there with him and everything went really, really well. He's got his PD catheter in his tummy and they are gathering the supplies to start him tonight. LP is still on a morphine drip, so he's *slightly* awake...but not very talkative. Lots of whispers and hand-gestures. I'm sure that his throat is sore after the breathing tube for the surgery, but he says that the only thing that hurts is his tummy. We'll be here at least through the weekend and most likely into early next week as well. It'll be a lot of just hanging out during the day (broken up by random blood draws, of course) and PD by night; to get his abdomen used to the comings and goings of the fluid. Here's a pic of the machinery we'll soon be using at home:
And, as an added bonus, here are some pics of Little Pom, stoned off his gourd, LOL:
And one of him sleeping it all off:
Update on Bubbles:He had surgery today too. His parents didn't bother to show up before he went down to pre-op, but Daddy says that he met Bubbles' mom at one point in the waiting room. Of course, she disappeared before he got out, so no one could find her to tell her he was going into the ICU. She most likely still doesn't know, or care. It's sooooo sad. We've been threatening to hide him in our luggage and take him home with us. But I'm thinking they'd catch on when we had to bring him back for his next hemodialysis. Bubbles has NOTHING from his own stuff here with him- no blankie, no toys from home. He has several hard plastic (ie: easily sterilized) toys from the playroom in his crib, including a little tiny plastic puppy he's totally latched onto as his own. Today, I went to Right Start and bought him 2 stuffed animals of his very own. Something SOFT he can cuddle with and call his own. But I totally plan on stealing that Happy Meal sized puppy for him if he leaves before we do. If he's out of ICU tomorrow, I'll post a pic of Bubbles with his puppy pals.Thanks for all of the prayers, loving emails, cards, light & positive energy sent our way. It is ALL appreciated & felt! More tomorrow.
To all my friends in the medical field who've heard me call it "Perineal Dialysis" this whole time:
Thanks for not openly mocking me.
Little Pom was re-admitted to Childrens today. His "Important Kidney Number" went back up to 5. Remember, normal range is about .9 to 1. So, his kidneys aren't thriving on meds alone and tomorrow he's having surgery to have a catheter put in so that he can begin peritoneal dialysis. Peritoneal Dialysis is actually pretty ingeneous, although it's more than a little overwhelming for those who are asked to perform it- the parents. LP will be doing the CCPD version of PD.
Here's the scoop: http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/
We've done really well with his medication, and the PD will allow us to ease up a bit on his diet, I've been told. But still....it's all sooooooooo scary & new & completely overwhelming. It didn't help any that Little Pom needed FOUR pokes today: bloodwork in the lab (what got us re-admitted), two attempts at IV insertion that didn't work...and one more that did. It was really, really hard for him and I have to say, my seedling is braver than I could *ever* be under the circumstances.
In the meantime, LP's roommate is a 2 year old little boy whose parents (we've been told) rarely visit. We've been here for 5 hours and they haven't shown up at all. He's really lonely and took to Daddy immediately. In fact, he was calling us both Mom and Dad right away. It's a really sad situation and we've unofficially adopted him. For the purposes of this blog, I shall call him.....Bubbles. Bubbles gets through his bloodwork & other pokes by blowing bubbles and he and LP were given a bottle to play with here in their room. Bubbles is very sweet, smart & happy. But he misses his own Mom and Dad. :-(
Surgery is set for early tomorrow, so I'm going to end for tonight. I'll provide a post-surgery update as soon as I have more to share.
I just spoke with the Urology Nurse Clinician who will be doing Rory's Urodynamics test. This is the test we've been told he needs before he can have the Meinenoff (sp?) catheter put in. Turns out, this involves removing his foley cath (yet again!), inserting a special catheter for the procedure and then putting the foley *back* in. Oh...and this time, just to add to the unexplainable misery for an eight-year-old child....he gets something in his rectum too.
I tried to explain to her that he needs to be sedated if she hopes to accomplish anything involving catheters. She said he has to be awake for the procedure itself but will ask the Urologist if we can sedate him in pre-op to get him set up, then wake him up for the procedure itself. Which then begs the question "how do they put the foley back in, once they've woken him up?" I'm going to call the Nephrologist and find out if there's any way to schedule his surgery for the same day, but I doubt it. So for now, we have extreme pain and trauma tenatively scheduled for Wednesday at 9am. Assuming they can get the referal from Blue Care Network in time. Otherwise, the back up date is the 21st. Although I don't know what that means for his surgery.
I'm done. Let us off the ride.
To everyone who's been calling in a panic: I'm sorry I haven't posted recently. We've all been taking some much needed time to relax, adjust and remember what it's like to be home. Here's the latest:We ended up in the ER on Saturday, because LP's catheter tubing was leaking. They switched it out and we've been mostly okay ever since, although he's been running around like a little maniac and somehow managed to put a small tear in the bag itself tonight. Daddy fixed it with duct tape, LOL. The whole family went to see the fireworks on the 4th and we bumped into LP's favorite day care provider and her family. It was soooooo wonderful to see them and we had a great time catching up. Yesterday was the Renal Clinic and while we weren't able to get the bladder test done that we needed, they've decided that Little Pom will have an MRI (without contrast dye) to make sure that his Non-neuropathic, neuropathic bladder is indeed "non-neuropathic" and not plain old "neuropathic." We have about 7 days left for this catheter, so I'm optimistic that we'll have the remaining procedures and his 2nd surgery by next week sometime. I got his labwork today and his "Important Kidney Number" has gone back up a bit, from 3.4 when we were discharged to 4.7 yesterday. When we go back next week, they'll check it again and hope he was just dehydrated.At the clinic we broached the subject of a pre-emptive transplant and the Nephrologist was thrilled! He said that usually it's difficult to broach the subject of something as radical as a transplant to a family, but that he's totally willing to pursue that path with us. We're supposed to be contacted by the pre-transplant coordinator soon. In the meantime: Are you bloodtype A-?Do you have an extra kidney lying around? Let us know! :-PIn the meantime, our insurance denied our request for a digital blood pressure machine, even though I'm hearing impaired and can't monitor LP's blood pressure with the cuff & stethescope they gave us. So, if someone happens to see a good deal on one, let us know! I need to find something reasonably priced before Daddy leaves for Arizona in September. Some good news: The Dancing Queen is home and already springing into action, monitoring Little Pom's meds and keeping us on our toes. Welcome home, DQ!!
Didja miss me? I know this is the longest I have gone without posting, but that's because....
WE'RE HOME!!!!
LP was discharged this evening and we are settling in back at home. We've got the foley catheter still in, and we'll have it over the weekend, but so far (in the 3 hours we've been home) it's been okay. We ate out at a restaurant and no one stared or pointed...which was a concern of mine. We'll go back for the Renal Clinic on Tuesday and hopefully we'll get everything set up for the last few procedures he needs for now. Renal Clinic is pretty awesome. We go in and see the Nephrologist, Nurse Clinician, Dietician, and Social Worker (for financial & adjustment issues) all in one swoop. Hopefully on Tuesday, we'll be able to see the Urology Nurse Clinician for the last procedure he needs done before the Minenhof (do I have that right?) Catheter is put in. That'll get rid of the bag o'pee we're carrying around with us now.
More Good News:
I FINALLY got Little Pom to take the last two medicines!! We traded a Tbsp of the nasty pink stuff (bactrim) for 1/2 a tablet of the same, taken at bedtime. It makes a WORLD of difference. As for the Sodium Bicarb, I'll admit: I lied. When it came this morning, it was still whole, so I told him that we had found an alternative for him. He said they looked the same, but I said "there are lots of white medicines. You can tell it's different because this one is two whole tablets you swallow instead of 4 half-tablets you chew." They're the same pills he's been resisting for a week, but darn if he didn't swallow them down with no problem! So, as long as this holds true over the weekend, I'm thinking we won't need the G-Tube after all! HOORAY!!! Poor kid, the final tally for medications is 6 types of medications (15 total every day) plus 1 shot a week. The injection is Epogen, which will stimulate red blood cell production & help his anemia. It's manageable, I think...as long as the battles over meds are over. We'll how tomorrow goes, when we do a full cycle at home. We're going to see the Clawson fireworks tomorrow night and Wall*E in the afternoon. We are under doctors orders to be normal. :-)
Bonus feature: My boss, Daniel, sent us a Bible verse via text message when LP was in surgery. Rob and I have decided that when we have the money, this will be our next tattoos; to commemorate this radical change in our lives and to acknowledge our blessings. Obviously we won't do the whole verses, LOL- just the chapter & verse. Here it is (Jewish Study Bible translation):
When you pass through water, I will be with you;
Through streams, they will not overwhelm you.
When you walk through fire, you will not be scorched;
Through flame, It shall not burn you.
For I the Lord am your God,
The Holy One of Israel, your Savior.
Isaiah 43:2-3
Well, he's out of surgery and resting. We have a name, although I have no idea what it all entails yet: "Non-neuropathic neuropathic bladder" aka "Hinman's". Let me start by saying I KNOW NOTHING YET. But, based on what they've told me:1) It's really rare.2) It is often related to either spinal issues like spina bifida, or extreme stress in the household. The surgeon off-handedly mentioned that if there are no spinal issues, it may be related to how Rory processed Rob's military deployments. They want to do an MRI to rule out a spinal cause, such as a tumor.3) Basically, the bladder contracts (as if it were signalling to urinate) and stays that way. Meaning, LP really, truly couldn't tell when he needed to go. This contraction in turn, caused the fluid to back up into his kidneys and caused the damage. 4) The pediatric urologist put it at 95% likelihood of needing a kidney transplant. He couldn't give a timeframe, obvisously, but he told us it would be "sooner, rather than later."So, course of action: they'll send him home (eventually) with the catheter he has now...the external one. In a couple of weeks, we'll bring him back and they'll do the catheter through the belly button thing. That's what we've decided is best for LP's temperment. There is a slight....slight chance that with this relief, the bladder could learn how to properly function, but this wasn't discussed for long and I'm not holding out much hope at this point. However, it would at least keep the fluid from going into his kidneys again. From now, we do maintenance on his kidneys, monitor them to see how much kidney function will return with time on the meds, and go from there. Sometime in our future, there WILL be dialysis and there WILL be a transplant. But, I hold out hope that after transplant, he'll be a normal, happy, healthy kidlet...who happens to pee through his belly, LOL. I'm going to try to do more research. I'll post what I find later on.
Still waiting on surgery. Still no news. LP will STILL not take two of his medications, so I think that daddy & I have decided we are okay with a GI tube. Our reasoning is that dialysis (still in the future, although we don't know whether the future means next week or next year) will only add 5% to his kidney functioning- it's the medication that does the bulk of the work for him. The longer and better he takes his meds, the longer (I think) we can delay starting dialysis. In the meantime, giving him his meds & stuff in an alternate way increases his quality of life three ways:
1) Delays dialysis, if only for a little while
2) Ends the 2 hour drama, 2x a day which reduces his trauma and our stress
3) GETS THE MEDICATION INTO HIM, allowing him to recover- whatever "recovery" means at this point.
It's a radical step. It's scary & extreme. We know that. But we've been here for 7 days, and he has yet to make any progress, no matter how slight, in the meds arena. I want to keep him safe & healthy- it's what I've always told him my job is. And I think that a GI tube might be the only way to do that at this point.
On a side note: I talked to LP's school yesterday and they are willing to work with us in terms of dosing meds & monitoring dietary restrictions. They suggested a med alert bracelet in case of emergency, and I ordered a really cool one today from this website: http://www.stickyj.com/ . LP's getting a stainless steel wrist-tag with interchangable sport straps. He picked out black, camo, outer space and football. :-)
We're waiting on rounds to come through so that he can go down for surgery.
PS- I went home for the first time in a week last night and stopped there to eat on my way home. My waitress made the mistake of asking how I was doing and I burst into tears, LOL/sigh. She sat down at my table, talked to me about Rory, asked to see pictures, gave me a hug, told me she'd pray for him. And then, when I was done eating, told me I had no bill to pay. Her name was Kim. So, if you have a Don Pablos nearby, go there, eat, ask for the manager and tell them that you are there because of Kim. She was an angel in disguise last night. :-)
Tuesday, 7:17pm.Little Pom has a fever of 101. They are bringing him Tylenol, which should go fairly easily, since he's had it a million times at home. They had to take out his Heplock earlier today because it clotted up...so they have to poke him tonight to get his daily labs.I'm going home before that. I just need a night away from the crying and the hurt and the feeling helpless.
Other than the nightmare of meds, we're pretty well tucked in for the night. The Nephrologist came in and talked to us a little bit more. Dialysis seems like it will happen sooner, rather than later. He's having someone come and talk to us tomorrow about the different ways in which they do it. His preferred method would actually be done at home, overnight, 7x a week. That way Rory leads a normal life, and gets his dialysis through a tube each night when he's sleeping. The alternative method is to bring him here 3x a week, where he sits in a chair for 3-4 hours and they do it through a catheter port in his shoulder. At home, its through a port in his side. I am broken by this news. I *get* that it's not the end of the world....but it's sooooooo hard to imagine the years ahead. He also told us that dialysis only provides an increase of 5% in kidney function- the rest is diet and medication. Which makes the struggle over meds all the more frustrating & scary. The G.I. tube isn't their first option, and he might even be willing to let us go home and try it there in a far less restrictive environment first, but if Little Pom continues to refuse the Bactrim & the Sodium Bicarbonate, then it'll have to happen. The Pediatric Resident changed today. Goodbye Dr. Sloan, hello "Dr. Dan." It's his first day- ever. He asked to do LP's catheter today and I said no, not if it was his first one. I get that it's a teaching hospital, but he's not practicing on MY kid. The nurse ended up doing it, so I'm guessing I was right...it would've been his first cath. But, for now, until medication time, we're all tucked in. I think I'm going home tonight to rest & gear up for tomorrow. It'll be my first time home since Friday morning. I'll do a little work, pretend everythings okay for a minute, and hopefully come back tomorrow rested & ready. I dealt with med time last night. Let daddy to it tonight! More tomorrow, after surgery hopefully.
Well, they sedated him to put the catheter back in and....it didn't work. Yeah, he was awake for the whole thing and once again, I could hear him screaming. They got in in this time though, and it's over. Little Pom is already back to playing Gamecube (thanks, M!) and acting silly. Hightlight of the trauma: afterwards, he was screaming "can you at least put my top back!?!?!" and everyone rushed to pull down his gown. LP screamed "NO!!!" and proceded to "readjust" his foreskin, ROFL. But we survived. Right now he's scheduled for surgery tomorrow. They're going to take a peek into his bladder, inject dye into his kidneys and see what happens. If they need to, they've already scheduled the time to put stints in the ureters, if they need to.So, that's all there is for now. More later, as usual. I'll try to take some pics and post them too. PS- They gave Little Pom back his flowers!!!! :-)
So, we went down for the Radioactive-Bladder-Thingy and it went.....eh.
They attached the vial of radioactivity-juice (dye contrast) to LP's cath line and pumped his bladder full. It was actually pretty cool at first to be seeing his bladder & kidneys & spine & stuff. The radioactivity-juice showed up a blockage, which changes what they're doing tomorrow...I just can't remember how at this moment. It's all become a blur (good thing I'm posting updates and can look back at what I wrote earlier!) now. Anyway, during this process, somehow the catheter came out. So, they tried really, really hard to get him to pee in a cup so that they could finish the test and see what was happening "down south." But, you know guys & pee pressure....it just wasn't happening lying sideways on a hard table w. your parents and a roomful of strangers staring at you and trying to convince you to let loose. So, his bladder is still full of radioactivity-juice, we are temporarily catheter free and are now waiting on SOMEONE to come and tell us what happens next. I'm guessing sedation & a re-insertion of the catheter & the heplock that clotted up today and had to be removed.
On the bright side, in approx. 45 minutes, I'll be able to eat for the first time today!
More later. Little Pom says thanks for all the well-wishes!
LP's going down soon for the Radioactive-Bladder-Thingy. If they find an obstruction (meaning if there's reflux from the bladder), they'll take him into the OR and go in with a fiber optic camera and see if they can get a visual of what's going on. If they DON'T find an obstruction, then they'll have to operate tomorrow and put stints in his ureters (tubes connecting his bladder to his kidneys) in order to help them drain into the bladder. So, we have a plan of action. In the meantime, "Important Kidney Number" stayed the same overnight, so it's still at 3.8. Little Pom will take three of his five medications- I'm going to ask the new pediatric resident if there are any more alternatives. I seriously just think that we broke Dr. S. By the time she was getting ready to switch shifts & floors, she was just DONE. She did say she'd come and visit, but I wouldn't be surprised if she's not REALLY relieved to be done with the Barner family. More after the procedure.
