Little Pom is FINALLY asleep after a rough, rough afternoon. Everything was fine until six. Earlier, he had gone with daddy to the Family Library where they checked out a couple of movies and got to go to a cool presentation all about bees. He even got to whack a beehive shaped pinata and bring back 16 (count 'em...16) bouncy balls. When he got back, daddy left to go do some laundry and things started to go downhill. They confiscated his flowers! The nurse came in and told him that he had a flower delivery (thank you, "Mysterious Stranger"!) but that she couldn't bring them in. I asked why, seeing as how he had 2 other flower arrangements already and she said that she had to take those out too! LP was inconsolable. Turns out, there are children with cancer on our floor who are imuno-compromised. They can't be around fresh flowers, because they might harbor bugs or germs or something. So....LP's flowers are all in the nurses suite until (thanks to the hospital psychologist) medical photography comes up tomorrow to take pictures of them for Little Pom. Then, we have to take them home. So that was insult to the injury of the day. In the late afternoon, we had visitors, who sweetly brought LP some balloons and a small hockey toy to play with. We had a nice visit, but when it was six o'clock, I asked for his medicine. I figured if we started earlier in the day, it would be less of a struggle....HA!TWO HOURS later, we'd gotten two of the five medications into him. He swallows his iron pill with no difficulty and now loves Tums (after I got them to switch it out for the nasty Calcium Bicarbonate and then shoved it into his mouth to get him to try it) but two of the others (a pink-syrup that's not amoxicillian and the Sodium Bicarb) he just freaked out over. I truly think that this was the worst day yet. The doctors and the nurses did EVERYTHING (and I mean everything) they could think of, short of strapping him down and force-feeding him. And he was like a kidlet possessed. I just asked the nurse: the other pink stuff is called Bactrim. Anyway, the pediatrician on duty eventually just gave up. She (rightly) said that we should not have to fight him for 4 hours a day just to get his medicine into him. She had to mark his chart that he refused to take some of his oral meds. She also threatened a G.I. tube if he wouldn't start taking it. I spent 45 minutes sobbing in the Chapel. A student nurse assigned to us, Jon, was absolutely wonderful with him and with me. He came down and sat with me, listened, talked, got me telling funny stories about our crazy life and cheered me....relatively....up. Jon was working on a 2nd degree in nursing after getting his Bachelors in History and then working construction for several years. I think he'll be an amazing nurse. And it didn't hurt that he was smokin' hot, either. (Don't judge....his presence was the ONLY upside to my day)Anyway, as I've been writing this, the nurse came in and I asked her about the G.I. tube. She said that she doesn't think it's very likely that they would do that just for 1 or 2 medications. If he was refusing all meds AND not eating, maybe....but she doubts it would happen in this situation. Tomorrow she's going to intercept Little Poms's breakfast tray and we'll crush the sodium bicarb and put it into his applesauce. If he doesn't see us do it, hopefully he'll eat it all up. Keep your fingers crossed. In the meantime, his blood pressure is WAY high- they just tested it and it was 133/100, so we're taking meds for that too. The BP medication is #5, for those of you keeping score up above. He'll take it without any problems, so of the 5 meds, we're only having issues with two. That to me is not G.I. worthy...and they can't do anything without our consent, right?So, I'm done. Done. DONE for today. I'm off to bed and will post here as soon as there's news tomorrow. To those who don't like this format and are upset I've switched over: I'm really, really sorry. It just makes my life easier. You can still call anytime.
Okay, so today has been hard. LP went for his ultrasound and there was no change. He's basically just as damaged now as he is when he got here on Thursday. I was truly surprised, since I was expecting SOME kind of improvement. But no. So, the radioactive bladder thingy has been cancelled until tomorrow, when the Urologist himself can be here, and not just the Urology Fellow. We tried to give Little Pom his morning medication and it was a HUGE battle- as usual. It took 90 minutes to get 3 pills into him. This has been happening twice a day the entire time we've been here. People have been asking, "aren't there ways to make it easier" and the answer is yes....but we can't. It doesn't do him any good if he's getting all of his medication via IV, and then won't take it when we go home. He's gotta get used to taking it *now*. Today, I lost the plot and basically sat and cried while the doctor and the daddy tried to get the life-saving little miracles down his cranky, stubborn throat. It's just so hard to expend all this energy FIGHTING HIM to save his life. Who cares if it tastes yucky...if it keeps you alive? But he's 8, and doesn't think like that. It's also been a hard day for news. Tomorrow, when they do the Radioactive-Bladder-Thingy, the Urology team will look for any obstructions and hopefully figure out a way to remove them Meaning: possible surgery. If there are not obstructions, then we have to consider sending LP home with a sort of "self service" catheter- one that he either inserts through his penis every 2-3 hours, or else a system that will allow his appendix to serve as a sort of auxilary bladder, which would then be drained on the same time schedule, through a valve in his belly button. At the moment, if we would need to make this decision, we're leaning towards the latter option since it seems like one he'd fight over less at home. Can't imagine trying to convince him to shove something in his penis 8-12x a day, when he won't even swallow a pill now. Any comments, thoughts, insights, advice you might have for us would be appreciated. They've told us a bit more about his condition. It's called Obstructive Nephropathy and you can read more about it here: http://renux.dmed.ed.ac.uk/edren/EdRenINFObits/Obstruction.htmlKeep in mind though, that BOTH of Rory's kidneys look like "the kidney on the right." He also has hydronephrosis, which is a part of the Obstructive Nephropathy. You can see what that is all about here: http://en.wikipedia.org/wiki/Hydronephrosis. Basically, his kidneys are WAY, WAY bad....and dialysis *is* a part of his future. We just don't know when. It was described today as an "eventuality." So, that's the news so far. I don't think I'll have another update today-- maybe a report about how well we do with meds tonight. Post comments- for me, for Rory. We'll be sure to pass them along.
They came and took his blood at 4 am, and we got some good news at 6. His "important kidney number" (the creatinine level) is down to 3.8 and his kidney function has slightly improved from 10-15% to 16-17%. So there's that. Bad news: this is not NEARLY the improvement we'd hoped for and when they ultrasounded his kidneys, they were the same size they were on Thursday before we arrived. So, after an entire weekend of pumping fluids and draining via a foley catheter, there has been NO change in the amount of fluids actually in his kidneys. Little Pom will be sedated again today, so that they can remove his catheter completely and pump his bladder full of radioactive dye. Then, they will put the cath back in and watch his functioning to figure out what's happening internally. From there, we'll (hopefully, maybe) know where we go from here. As of today, the creatinine levels are dropping, but there's been no other improvement.
So for now, more morphine, more tests, hopefully more answers.
In the interim, LP grows crankier by the day. On the bright side, this is mitigated by the (pathetic) amusement he creates when he's stoned on morphine. :-)
More later on.
For those who may read L's blog, and not know what's going on, I'm posting all of my email updates about Little Pom here below. He's happy & content as long as they leave him alone, and his numbers are improving, so that's good. LOT'S of people have been asking what we need. Visits are nice, although I can't promise we won't have to kick you out (just ask L!) at some point. Otherwise, $5 meal passes so that we can join him at meal times are awfully helpful. We spent almost $300 on meals our first few days here, before someone clued us in to the fact that we could pay a pittance & eat with Rory. Those are the practical, earthy needs. Other than that, prayers, healing energy and holding sacred space is very, very, very much needed. Thanks all! Here are the updates so far:Friday Morning- Hi all,
For those of you who don't know, Little Pom (my little boy & only child, age 8) was admitted to Childrens Hospital yesterday. He looks, sounds, & feels fine; but some routine testing showed some really concerning issues with his kidneys. RIght now they they are filled with fluid and severely damaged. The Nephrology Fellow here at Children's estimates their functioning to be between 10-15%. She's not sure how much of this is acute & reversible and how much is truly permanant damage. They tried to get a catheter in last night to drain the fluid, but there is a blockage of some kind. What should have been a 5 minute, fairly easy procedure was 30+ minutes of torture & trauma for the kidlet. They never got the cath line in, so this morning someone from the Urology department will be coming in to visit. They will determine whether they sedate Little Pom & try again (we have told them that they aren't doing ANYTHING to Little Pom that doesn't involve sedation or anesthesia after that fiasco) or whether they take him straight to the O.R. Little Pom cannot eat this morning, as a just-in-case, and didn't sleep very well because they didn't even get the IV line in until almost 1am. We got here at 3:30 yesterday afternoon. If anyone wants to visit, we are in room 676 Bed 1 and would be delighted to have the company. Little Pom also hopes that someone will send him flowers, LOL. Anyway, that's all the news we have at the moment. I will send out another email as soon as we have more.
Please hold my son in your hearts. This is terrifying for him.Friday Update #2-Okay, they got the catheter in after sedating Little Pom. Kidlet got morphine & valium and was more than a little stoned when he woke up. Good news is that the catheter is draining well, apparently. Head of Nephrology came by and said that there was no change in LP's labs and that at the moment he is considered to be in kidney failure. If it weren't for the urinary tract obstruction, they would already be talking about dialysis, but for the time being, they are waiting to see how much fluid will drain from his kidneys and how much of the kidney function returns after that. From there, it's up to Urology to determine what to do with his obstruction and up to nephrology to decide what will happen long-term. And there *will* be long-term...this is something that he will be dealing with (in one way or another) for the rest of his life. Let's hope that all he'll need is medication, because the alternative would be dialysis. Sunday Update #1-So far, we're waiting out the weekend and praying for increased kidney functions. I should have his daily labs back soon and we'll know more then. He's putting out LOTS of fluids (he's on a fairly steady IV dose) which is good...he's not retaining anything thanks to the catheter. He's happy & alert & playing video games, LOL. His IV line clotted over, so they put it into his heplock line. An hour or so ago, they came and installed a new heplock in his other arm (this makes blood draws WAY easier, because it's one poke for all of them...instead of one poke for each) and it was really fast & he was quite brave.
Right now our biggest stress is getting him to take the oral meds. Iron he can swallow down no problem, calcium is yucky, but today I covered the pills in a spoonful of honey, LOL. It was still a struggle, but once he took it, it was okay. So hopefully tonight he'll know that honey makes it easier & we'll have less of a battle. Last night they tried to give him a potassium supplement (strangely for a kidney patient, his potassium was LOW. Usually it's too high!) that was truly vile. We fought and cried and cajoled and threatened and yelled and begged and bribed for nearly an hour to no avail. Finally, the doc agreed to put it in his IV line, but made sure he knew that we wouldn't be allowed to go home until they knew he would take all of his meds- including the yuckiest of them all. Thankfully, the Chief of Nephrology was in today and he says he thinks it's highly unlikely that we'll need the potassium at home. :-)
Nothing more is going on until tomorrow, when we'll have a bladder x-ray and a consult with urology. That's when they'll decide what the next steps are & whether or not he'll need surgery. We'll be here at least until Wednesday, we've been told. I'll let everyone know his creatinine levels (not that I can spell it) in the next update. In the meantime, send him "low, low, low" vibes....low creatinine means higher kidney function!
Hugs for now & thanks for all the prayers.
Sunday Update #2-Little Pom's Creatinine levels have dropped to 4.4 (from his high point of 6, trying to get down to a normal level of 1), which means that his kidneys are now functioning a bit better. :-)
Keep sending those LOW, LOW thoughts our way!
:-)
I was watching the documentary that Ricki Lake made, called The Business of Giving Birth tonight. Those of you with Netflix can watch it instantly here: http://www.netflix.com/WatchNowPlayer?movieid=70075502&trkid=228971 Anyway, it's all about homebirth and midwifery and it really brought back memories of Rory's birth. For those who don't know, my son was born at home after a 30+ hour posterior (or as my midwife called it "sunny side up"), natural, labor. I've never written the birth story before, and in a way I regret that; because now, eight years later, I'm sure there are small details that I will miss. But I think it's important to record.On April 20th, after having sporadic contractions the night before that left me very tired and more than a little scared, I called my midwife, Linda Honey and told her that I was afraid. I was afraid that the contractions would deprive me of sleep and leave me exhausted...which would result in fatigue requiring transport when I went into full labor. She advised me to take a nap and then come to her house after Rob got off of work. She would make me a castor-oil smoothie which would help speed up my entry into labor. I managed to catch a few restless hours in a recliner at Oakland-Pontiac Airport where Rob was working at the time (and also where Rory was conceieved...but that's a story for another day) and when his shift ended, we headed towards Lindas. She gave me a smoothie and a once-over, and declared that I was progressing nicely and would most likely be in full labor by that evening. Rob and I went home to prepare. I put on a yellow, embroidered cotton nightgown that I'd purchased for just this moment and Rob put the "welcome outfit" for Rory into a paper bag, then into the oven on low heat. My contractions were steadily increasing and after a length of time (not sure how long) Rob called our birth team to come over. That evening, Linda Honey (Rory's midwife), Beth Bailey Barbeau (my midwife, who was also pregnant with her first child at this time), Nissa & Diane (their apprentices), Renee (my support person), Rob (my partner) and some massage therapist-lady whose name I don't remember gathered in my living room sharing crudites and crackers and occasionally watching me have a contraction on our couch. I remember trying to convince Linda that Rory was posterior, but she kept saying "no....you're not in enough pain for it to be back labor." I was in a considerable amount of pain, I won't minimize it. But to be honest, I think that I was too naive to understand how badly it hurt. Every single contraction, I would think to myself "that hurt, but it wasn't so bad. The next one will be worse." I would look at the birthing altar that Rob and I had set up over the course of my pregnancy and brace myself for the next, "worse" contraction. The birth altar was a small endtable, covered in a soft, green recieving blanket for an altar cloth. My black Nile Goddess was in the center, with a pair of yellow crocheted baby booties from my grandmother in front of them. I had my birth art (done over the course of reading "Birthing From Within"...a book that talked me off a ledge many times during pregnancy) on the wall above it, along with a bumper sticker that said "Men Who Change Diapers, Change the World." The altar also had small charms, including a tiny jade heart, on it. It became evident that while my time on the couch was relieving my back pain, it wasn't doing anything to progress my labor. Linda and Beth decided to put my in a warm shower with Rob. We were living in a cheap, one-bedroom apartment at the time and I knew that there would only be enough hot water for ONE shower over the course of my labor...so it was important to time it right! After the shower, which felt amazing and worked wonders to ease my pain, they had me squat in the bathroom. At one point it was suggested that putting me on the toilet might encourage me to push...I wasn't a fan of this idea (LOL!) and we went into our bedroom, where the birth kit supplies were assembled. I had purchased new sheets for the delivery: pink, white and yellow plaid to match my yellow nightgown. I was too modest to birth in the nude and ended up keeping my nightgown on the entire time. I still have it and wear it under my ritual garb when I work magick- it's imbued with energy from the strongest, most emotional moments of my life. I laid down in the bed and progressed quickly into transition. I was really, really, tired. I would literally fall asleep in between each contraction, wake up long enough to push a bit, and then go back to sleep. Eventually, I got the hang of pushing. I'd been pushing from the top of my stomach/diaphragm the whole time...which I think is what made things take so long. As soon as I realized it was more like (forgive me!) pooping out a baby, things moved faster. Someone asked me if I wanted Renee in the room to take pictures. I said no, but Beth knew me better than that. She knew that Renee's JOB was to take pictures for me- that was what I'd said for 9 months! So, Renee quietly entered and sat at the foot of my bed, while Beth was on my right and Rob on my left. Linda and Nissa quietly attended to what was happening below the belt. :-) Transition, which Linda also called (accurately!!) the "Ring of Fire" was the hardest part of labor- THAT was the "worse pain" I'd been waiting for, and it tooke evertything I could to move to a place beyond the physical and work my son into this world. Beth kept encouraging me to reach down and feel his head crowning. At one point, she took my hand and guided it down to where his skull was beginning to emerge. I shrieked and pulled away as if I were burned: at that moment, the LAST thing I wanted was to be reminded of just how big the baby and how small the exit was!Rory was born at 3:17 a.m. We had a sound machine on at the time set to a heartbeat effect. When he emerged, he was crying in rythym with the heartbeat...a natural drummer from his first moments. Rob wept openly, but was scared to get too close, too fast. He had lost several siblings at or near birth and was reluctant to get attached without knowing his son would be okay. Rory had a bit of a hiccup in his cry, but a few minutes with the oxygen tank and it went away. His cord was cut and all of his initial apgar scoring/cleaning/dressing/etc. was done right on my stomach. Renee took beautiful photographs, including one of Rory making a face we call "the lip" that became familiar to us as he grew older. The face he made whenever he was displeased or grouchy was present from his first moments after birth! Obviously, he was NOT happy to be removed from his warm, cozy womb, LOL. This was the exact birth I'd wanted. After a nightmarish experience with an Obstetrician that would fit perfectly in a horror movie, homebirth was the only option I considered. I am sooooo grateful to have had the choice to decide what was best for me. For my baby. So many women don't have that- either because of the laws in their area or because they aren't given the information necessary to different choices. I am so blessed to remember my birth as peaceful and loving and empowering and safe. I would never do it differently. In fact, Rob and I have been trying (unsuccessfully) to concieve for three years now, and the only birth I would ever have is another homebirth. I am truly grateful to the women who have continued on the ancient practices of woman and child-centered care. And I am thankful to Ricki Lake for making this documentary, showing others the blessings that I recieved. The American Medical Association is pissed though, and is threatening to promote legislation discouraging (or perhaps even banning) the practice of homebirth. CHOICE doesn't just mean the decision to have a baby...it also means choosing where, when and with who. And no one should be allowed to take that away from me- or anyone. If homebirth were every truly banned, I don't know what I'd do. Not that I'm in the position of needing to decide right now. So thanks, Ricki, and thanks to all of the other famous homebirthers...doing their part to normalize the practice of birth in America. My birth- the day Rory was born- is the most pivotal moment of my adult life. I am so grateful.Other famous homebirthers:- Laila Ali- Pamela Anderson- John C. McGinley's (Dr. Cox on Scrubs) wife- Charlotte Church- Lisa Bonet- Josie Maran- Kelley Martin- Dave Matthew's wife- Ani DiFranco- Joely Fisher- Demi Moore- Kelly Preston- Erykah Badu- Asia Carrera- Morgan Spurlock's Wife- Ricky Lake- ME!! (I'm am an author after all!)
I got an email the other day from my bio-dad. Attached was a photograph of me as a child. He sent it to remind me of the good old days, when we were a loving, happy daddy-daughter-duo. It was bizarre though, because he sent a picture of one of the most traumatic moments in my early childhood! When I was about 4, he dressed me up as either Laural or Hardy (whichever is the fat one) because that's what he wanted me to be for Halloween. I wanted to be a princess, but he thought that making his small daughter dress up as an overweight drag king was MUCH funnier. To him, anyway. So, after allowing him (meaning I was too little to really put up a fight) to dress me in his clothes, stuff them with pillows and then smear mascara on my face for a mustache, I posed for this picture. About ten seconds later, I was on the floor- I can't remember if I fell over or if he pushed me- but I couldn't get back up because of all the pillows. I remember flailing and crying, trying desperately to get back up....kinda like Ralphie's little brother in A Christmas Story. He thought this was even funnier and stood their laughing and laughing as I cried and begged him to help me back up. And *this* is the one photo he chooses to send me in order to bring back those nostalgic childhood days. What an ass. Here's the picture: 
Since the conversation has turned to angels, for some inexplicable but amusing reason, I wanted to “fact check” myself. Turns out….I was right! According to Catholic Encyclopedia online, this is the Biblical description of the Cherubim:
"Ezechiel's vision of the Cherubim, which is practically the same in the tenth chapter as in the first, is one of the most difficult in Scripture, and has given rise to a multitude of explanations. The prophet first saw a luminous cloud coming from the north; from a distance it seemed a heavy cloud fringed with light and some intense brilliancy in the centre thereof, bright as gold, yet in perpetual motion as the flames of a fire. Within that heavenly fire he began gradually to distinguish four living beings with bodies as men, yet with four faces each: a human face in front, but an eagles face behind; a lion's face to the left and an ox's face to the right. Though approaching, yet their knees did not bend in their march, straight and stiff they remained; and for feet they had the hoofs of oxen, shod as it were with shining brass. They had four arms, two to each shoulder, and attached along each arm a wing. Of these four winged arms two were outstretched above, and two were let down and covered their bodies. These four living beings stood together, facing in four opposite directions, and between them were four great wheels, each wheel being double, so that it could roll forward or sideways. Thus this angelic chariot, in whatever of the four directions it moved, always presented the same aspect. And both angels and wheels were all studded with eyes. And over the heads of the cherubim, so that they touched it with the points of their outstretched wings, was an expanse of crystal, and on this crystal a sapphire throne, and on the throne one resembling a man, the likeness of the glory of Jehovah."
That would be found at http://www.newadvent.org/cathen/03646c.htm for those of you keeping score at home.
Two more interesting facts that I learned while trying to validate my remaining scraps of Biblical knowledge:
1) According to most of the sources I found, Satan himself was of the Cherubic order of Angels.2) The actual name for those tacky French furniture babies is “Putti”…which I think suits them perfectly. It sounds adorable and vaguely obscene.
3) Eschatology is the study of the End Times. So while I did in fact have to study that too in my “Just-Like-Saved-Only-Not-As-Liberal” Junior High…it was a separate course. I was confusing it with Angelology…which I also had to study. Go ahead….make a comment…get it off your chest, LOL.
