Thursday, August 31, 2006

Take Out the Trash Part 3........

Ok let's see if I can finish this up.

Monday, Dr. Marrow says Lauren can go home Tuesday. So Tues morning, I take my time packing up. My mom's there w/us playing w/Lauren. I knew it would be a while before we were discharged. Around 3 that afternoon, Dr. Fasules (the cardio working the east side for the next 2 weeks) and Dr. Francis (a resident) come into Lauren's room. They don't introduce themselves--nothing. Dr. Francis says "so, we're going to turn off the pulse ox machine." And I say "you mean at home?" and she says "No, you're not going home." I say "Dr. Marrow said we could go home today." Dr. Fasules pipes in "No, you're not, and she should've never been sent home in the first place." hmmmmm ok---then he says "I don't know when she'll go home." I then say "Do you know what we've accomplished in the 5 days we've been here?" he replies with "nothing" I said that's right "nothing, noone is worried about anything, why do we need to stay?" he replies with "I would've never sent her home." and then walks out. Ok--I was upset--but didn't make a scene. I unpack and bawl the rest of the day :( Tuesday, around 11:00, Dr. Fasules comes in again w/a nurse. My mom is there again playing w/Lauren. He tells me they want to do another echo. Ok--fine--we start talking and I ask him (a valid question in my opinion) what does he see that all the others didn't see when they discharged her the Thursday before......and here's our conversation:
me--what do you see that everyone else didn't when they discharged her last thursday?
him--well, sometimes doctors don't have a choice when the parent is PESTERING them to go home
me--are you telling me that the only reason they sent my child home is because they felt like i was pestering them?
him--WELL IF YOU PESTER THEM ENOUGH-------all caps cause he was yelling by this time
me--well, if that's the case, then I've got her in the wrong place--and i can't believe you would say something like that to me---she saw 10 different doctors across the hall and they all felt that she was ready to go home---Dr. Marrow told me she was ready to go home from this stay today
him--it sounds to me that you only hear what you want to hear---(then he backtracks) oh I don't know maybe you hear the positive and I hear the negative
me--by this time--i'm livid and we're both yelling---i repeat i can't believe you're talking to me like this---i've never had anyone here act like this
him--well you pestered them to let you go home---then when you get home, you call up here 3 times---you refused to bring her to the east side (stepdown unit) before going home
me---it was never once mentioned that she needed to come to this side---I only called b/c her sats were so low at home
him--well, i need to get someone up here to DEAL with you so I can take care of her
then he would start to walk out and he'd turn around and just keep on----IT WAS AWFUL
I have never ever been so angry in all my life---he basically told me I was only interested in going home and not what was best for Lauren.
So, he finally walks out---and I burst into tears I was so mad....now my mom has trouble hearing---but she knew we were fighting but couldn't understand every single word but she heard enough that she was mad too. A few minutes later---a social worker walks in---yes a social worker ha! I tell her what happened---she says I just can't believe that Dr. D (the one that d/c'd lauren from cvicu) would tell anyone that he was pestered into releasing a patient. I ask her who do I talk to---he's not getting away with this- and she says Dr. Marrow---he is Dr. Fasules' boss. So she calls him and he comes up a couple of hours later to talk to me.
We went into a room to ourselves and he said let's talk about Lauren first....I said ok---he went on to talk about all she'd been through, etc. and how he and the other doctors always talked about how I was always at her bedside, always had faith in them, etc. and yes that's all good to know---but not what i was worried about....then he says ok--tell me what happened---i told him and the nurse that had come in w/dr. fasules and heard the whole thing---was in there w/me and dr. marrow---she kept trying to defend him but couldn't deny the things he had said....dr. marrow was furious.....he said i knew they were releasing Lauren---we all thought she was ready, it didn't have anything to do with you......etc. So he goes and speaks to Dr. Fasules---a few minutes later, dr. fasules comes into lauren's room and starts talking about her echo results--then in the middle of all this he says "what can i say, I was wrong".......well, i knew that was all i was going to get out of him so ok fine.......but from that moment on, he lost total control of Lauren. Her surgeon stepped in and took over the decisions---her sats no longer were an issue (like Dr. Fasules was so worried about) and guess what became the issue??????????????
her incision---yes, the only thing my dh and I had asked them about every single day since we'd arrived---so they put her on an oral antibiotic and we had to stay until the next Monday.

Ok---I just wanted it out---there's noone I despise like this man---imo he is the very saddest, sorriest excuse for a doctor or even a human being. He treated me exactly how I would expect they wished they could treat some of the sorry parents that never come see their child....he will never ever have anything to do w/Lauren again---I don't care what kind of hell me and dh have to raise---it's been over a year and I still cannot believe I didn't do more. If I had it to do over; I wouldn't have slept until he was fired---there is just no excuse.

**For the record, cause I'm sure you're wondering----my dh never could catch him lol and it's a very good thing, I have no doubt....dh would come see us, doctor would be nowhere around.....ok if you had the patience to read all of this -- thankyou :)

Taking Out the Trash part 2........

So, Wednesday morning comes, Lauren's feeds are back to normal. Dr. D comes in and examines her and walks over to me and here is our conversation:
him--we've decided Lauren needs to go home on oxygen
me--i don't understand, she did great yesterday and last night (sats were higher than ever)
him--i know, but we've discussed it and we feel that she needs it
me--(bit discouraged but not angry) ok--i need to learn that things change daily, even though i don't understand---so you've decided she needs oxygen and her feeds are fine---what's keeping her here now?
him--well, she ran a fever sunday night (um, yeah--wasn't too worried about that monday--now, NOW i realize why he was hesitant to release her but he just would not come out and say i don't feel that she's ready--instead he kept giving me stupid excuses)
me--ok when do u think she'll be ready to go home (now, I'm not mad and he knows it---he realizes I'm upset w/the whole oxygen thing)
him--tomorrow--she can go home tomorrow
me--ok great
him--i knew you were upset because you would not look me in the eye--(hehe he and i have hardly ever held anything back--he's been w/lauren from day one)
me--yes, i wasn't angry--just upset
him--i completely understand, now, one more thing--do you want to go home from here in the morning or from across the hall (now across the hall is the norm for getting ready to go home but noone had ever mentioned lauren needing to go there at all---she was weeks out of surgery, there was nothing for me to learn, etc.)
me--well if you need this room then across the hall, but if you don't--it's much easier to go home from this side
him---ok--you'll go home from this side
From that minute on----everyone was getting things ready w/o me having to ask for a single things---the head nurse was filling out lauren's prescriptions, calling and having oxygen delivered the next day, etc.----all was going good.
The next day--we take her home--she was so excited all the way home. Get home and after a couple of hours she is just not acting right---sats were very low. By that night i decided to call the cardiologist on call---he said he wasn't worried that it was probably just the transition from hospital to home---well then she spiked a temp--called him back---still not worried. Ok--next morning--i simply wanted her cardiologist to know how things were going---i was getting high 50's on her feet and low 60's on her hands---very very low. They call back---she needs to be re-admitted.....ok---this time on the east side (the not so sick side where you room in and take care of them but still get interrupted/woke up constantly).
Get up there--by now it's july 1st....Dr. Frazier comes in and she says i'm just going to watch her---and just leave her alone--ok great.
A couple of hours later, Lauren rolls over from her side after being asleep and her chest incision looks absolutely awful---we get the nurse, she gets the doctor---not worried--we'll just keep and eye on it (remember this).
The weekend was awful---ended up getting a temp, they insisted on iv antibiotics---took several sticks ugh---not a night i'd relive for no amount of money. Weekend goes by--noone is concerned at all w/her incision, her sats---nothing. Sunday night her iv goes bad. I refuse another one because her cultures are growing nothing. Argue w/the resident on call that not only cannot make the correct calls for a heart patient but probably couldn't even spell lauren's defect---she ends up calling the cardiologist and gets overruled :) Monday--Dr. Marrow comes in (he's the chief cardiologist) and says--let's keep her one more night and see how she does then she can go home tomorrow---still noone is worried about her incision or sats.
Here's where the good doctor comes in. And, I'm gonna have to finish this in a little bit---Lauren's awake and we gotta go get Jordan :)

Taking Out the Trash.......

I don't know about the rest of you (well I'm pretty sure you'll agree) but the absolute worst thing anyone could ever do is to question my parenting or my intentions as a mom. That's the best way I can explain why this incident has bothered me so much for so long---I feel like this person did exactly that or tried to. This happened while Lauren was in the hospital last year. Now, this is going to be long................grab a snack and go pee before you get to comfortable :)

First some background info......now remember, we had already had a 2-month stay at children's right after Lauren was born. During that time and after we brought her home, I tried to learn as much as I could about her heart defects, etc. I talked to many different people. And, I learned what was/wasn't appropriate with the many different doctors/nurses/surgeons. Prior to her 2nd surgery last summer, we had already been through her first cath where they told us they found another defect that she couldn't live with--surgery, transplant, nothing would help her--and we only had a few months left with her. After discovering it wasn't as bad as they thought--we lived through many months on the transplant list, all of the pre-listing testing, her surgeon committing suicide--the list just goes on. So--in summary--we had been through a lot more than most heart patients--and we had learned a lot.
Now--I met every kind of parent you can imagine while sitting in that waiting room. I met the parent(s) that only called to check on their child--never visited (this is from talking to nurses); I met the parents that actually enjoyed the waiting room--the living conditions were probably 100% better than what they had at home--just a big party; I met the parents who cried for their sick baby but after having been in the hospital for weeks couldn't tell me their child's heart defect(s); and then there is me and my husband and more like us that cry for their child but also want to know everything they can--these are the families that I bonded with. But, I can clearly see the type of people these doctors/surgeons etc. deal with on a daily basis.
Now--here is how I dealt with doctors, etc. The CVICU is a scary, highly stressful environment. These babies are just about as sick as you can get. The doctors are almost always stretched to the limit. I learned very quickly and not by force that if you want/need to speak to the doctor--wait until they approach you because they almost always will or tell your child's nurse that you would like to speak to them when they get the chance. I treated them all with the upmost respect and all except for this one I was treated the exact same way. These people were saving my child's life or at least trying everything in their power to do so---they deserved to be treated as such. And, I did---I'm not trying to brag-I'm honestly trying to just set the stage-I'll just forever be in debt to all these people...and I let them know it. If one came up with a good idea, etc. I let them know how much I appreciated them.
Now--a little more background but I'm getting there. A routine echo/checkup in February last year showed much improved heart function. Lauren's cardiologist came into the room actually "giddy" and I would never use that word for this woman---all business :) She wanted to try another heart cath and see if Lauren was finally ready for the 2nd stage that she should've had months earlier. Finally get it done in April---the whole cardio staff was certain she was ready for it. So, she became inactive on the transplant list and the surgery date was scheduled. Went in on May 26th for preop and had the surgery the 27th. She did great---much better than my husband and I expected. The next couple of days she was doing pretty good---her sats weren't too great but they hoped they would increase with time. On the 1st she started going downhill and her cardiologist which happened to be the doctor on the unit for the week felt that she needed to be put back on the vent. They decided that afternoon to take her back for a cath to see why she wasn't responding well to the surgery. Nothing showed up---she was getting sicker. Took her back again on Friday to put in a stent in her pulmonary artery--thought this would help--it didn't. For the next 2 weeks, Lauren was intubated and completely paralyzed. They had her on a drug so that she didn't wake up or even flinch. Her numbers were still bad---several times her numbers would bottom out and her room would be swarming with doctors. After about a week and a half of being so sick, she bottomed out one day and her surgeon, Dr. Imamura, decided to take her back and completely undo the surgery. If it had been 5 minutes later she would've had that surgery, but they had to wait on the previous or patient to come out. Her numbers went back up and everyone backed off. That afternoon, they met and decided she needed a heart. Her surgeon and cardiologist came into her room and said she'd just been up'd to a status 1A--in the hospital on the vent. She stayed this way for about a week....now each week a new cardiologist or intensivist (intensive care doctor) would come in--they have a staff of about 10 that works this unit. So, Dr. Buddha came in one Monday---it was his week---knew him well. He decided to start trying different vent settings, rolling her over, etc. Everything he would come up with-worked-we kept seeing improvement. By the end of his week, he took her off the paralytic drug and let her wake up--she was still intubated. After waking up good, she showed her dad and I itsy bitsy spider---we were crying and laughing--it was wonderful--we had no idea how her mind would be--even the docs weren't sure. The next day she was extabated and on the road to recovery. We spent two more weeks in cvicu--they were messing with different meds, oxygen intake, her feeds, etc. I never once asked anyone when we were going home. Never...I knew how sick she had been...at one point her surgeon and another doc came in her room while she was so sick and told me that they had never had one this sick come out of it on their own. So, even though I'd only been home once in about 30-35 days, I wasn't going to hurry them. Our last week in cvicu went like this: Dr. D (his name is super long) came in for his week. Knew him-liked him very much.........I would happen to be back there (well I usually was constantly now that she was awake and the nurses didn't mind b/c I was who she wanted) when he would make his rounds so on Monday morning, after examining her, he came over to me and said "All we like is getting her feeds back up to where they need to be and deciding whether or not she needs to go home on oxygen." Ok great! He adds "I think she'll be ready to go home this week." Ok--someone has said go home---now I'm getting antsy--I won't lie about that. Tuesday morning, he comes in and says let's take her off oxygen today and see how she does. I walked her around the hospital all day. She did great.

Ok gonna post this one, I'm afraid I'll lose it.

Just because..........

So, Stacey's liberating post on the board got me thinking. I'm really lucky considering some of the things my fellow moms have been through. I was never abused--mentally, physically, or sexually---something that I'm finding out now that I'm an adult is very very rare. My dad was an alcoholic while I was growing up. He cheated on my mom--hit her a few times....but she worshipped the ground he walked on. Luckily, he realized what he was doing and now adores her the way she always has him. I still remember the day he decided to quit drinking for good. I was 15 years old and he put his last beer can up in the kitchen cabinet with the date on it. And, he did---quit, until I got pregnant with Jordan, he took it up again, but it didn't last long. My mom had grown some balls and wasn't going through it again. He's a wonderful dad--he would do everything/anything in his power to make sure my brother and I are happy. And, he's a great grandpa. My two girls have something I never had and that is fantastic grandparents.
My mom---wow---simply the most amazing woman I know. In a world filled with takers she is the biggest giver I know. I can't imagine my life without her....so, to sum it up, I've been very blessed. And my heart goes out to all my friends that have dealt with so much. Although mom and dad won't read this---lol---this blog is just to share w/my other mom friends :) If felt good to say it--and it felt worthy of saying.

And, now I believe I'll blog about the good doctor that has taken up enough of my thoughts for the past year.

Sunday, August 20, 2006

I'm So Nervous!!!!!!!

I promise I'm going to try to write a fun post soon!! Lately, it's been a bunch of whining and well I'm so not that person lol! I've just got to get through this week!!! Jordan starts school tomorrow. I'm so nervous for her. She's excited which is great, but I'm so not! I'm trying not to let it show. She knows I'll miss her. It's just going to be so hard, because I've enjoyed her home the last 2 years.
And the thought of this Friday just makes me sick. I can't believe it's been a year since Lauren has had to have anything done. Please say a prayer that it goes well and they don't throw us anymore surprises! It's just so hard to go back to that place.

Monday, August 14, 2006

Whole Lotta Bitchin

This is going to be a woe is me post---just wanted to warn you.

First, most of you know my brother and his wife, Jill, divorced last November. No signs of trouble, nothing. She just up and decides she's no longer happy. Then we find out she had someone else. The person I had talked to daily by phone or in person for the last 10 years up and left -- me included. She turned her girls' lives upside down. They're thrown all over the place. She had been a stayathome mom (use loosely); she got a job, stuck the youngest in daycare, and their time became split between aunts, mom, dad, grandmas, and babysitters. In my mind, she completely put herself before her girls.
So, it was hard but everyone especially my brother, muddled through. The only thing that had ever bugged me about Jill was the fact that even tho I knew/know she loves her 2 girls...she doesn't like to take care of them. She is absolutely fine with someone else having them. There were times it made me nuts when me or my mom would have them day after day, but other than that, I truly loved her like a sister. It's almost like she fell off the planet now. And, to top it off, she's happier than ever---I know I sound awful---but I hate it. She's marrying this guy in a few weeks. She has it completely and totally made. She hardly has to take care of her kids, gets a TON of child support (even tho my brother has them more than she does), and continues to go about as if she has done nothing wrong. I just don't get it. She has truly made me wonder if anybody I know is what they seem.
So, last time I saw her was at Jordan's b-day party in December. Months passed--no calls, nothing. Then last weekend, my oldest neice wanted to spend the night so we had to go by and pick her up. Jill comes out and hugs me for like 5 minutes. You know the kind where you try to end it but the other one won't let you. I was so close to tears but all the kids were around. She told me she missed me and that she had picked up the phone a million times. I know in my heart she misses me; I guess it's impossible to stay close to your ex-sister-in-law.
This is the same person that was at the hospital during Lauren's first stay---just about everyday. She stayed nights with me...cried and prayed with me. Now, I know you don't stay married to someone just for their family. But, when you don't really have a reason to end your marriage other than your own foolishness....I don't know....it's over, they're both getting married to someone else---I think I'm the only one still reeling from their divorce.
So, my brother met someone a few months ago and they're already engaged. She's nice, has 2 kids--a 2-year old and a 3-year old. Between them they'll have a 2,3,4, and 8-year old. I've only been around her a handful of times, but I just do not care for her at all. She's 8 years younger than my brother---nothing wrong w/that....except that the age difference shows so much. Like I said, she's nice, but she has made no effort whatsoever to get to know me. She's been over to my house 3 different times---all 3 times, she gets in the pool while her 2 little ones come into my house. I don't mind watching other people's kids sometimes...but she doesn't even know me. The first time was on July 4th....she left for about an hour and left the kids here for me and mom to watch---ok no big deal---except they don't know us and vice versa and they're screaming for their mom the whole time. The other time she came over was one day after Lauren's cardio appt....they always drain me and her....we had to get up early, etc. She comes over--hops in the pool and her 2 littles ones stayed in with me. She doesn't ask--it just happens. Then today, me and Lauren run to town, get home, they come over and it happens again. Yes, I know----it's my fault if I let it happen. But, what in the world do you say to someone who is apparently so friggin oblivious? It would just piss her off, thus pissing my brother off. But, does it really matter? I just don't do people this way. When in the world did people start thinking it's ok to do others like this? I'm not expecting any answers--just bitchin like I said.
Anyway, my mom claims she and my brother are crazy about each other. Well, of course, she's crazy about him---not very often some man will take in a much younger woman with 2 little kids, plus I know him...he's probably spent a ton of money on her already. They planned to get married next June, now it's moved up to Christmas. And, why do I even care? Well, I guess I wouldn't if she'd take care of her own kids when they come around.
So, this isn't even the tip of the iceberg with what's really bothering me. I feel like I have noone, no safe place, to even talk about it.....it's just too crazy to understand. And, again, it's something that I myself have put up with for years. Regardless of how I try to hide stuff, my mom always knows when something is wrong. So earlier, when everyone was here, she asked what was wrong and kept asking. Finally I said Mom I've got a ton on my mind and I just don't want to talk about it right now---which in turn hurts her feelings....I thought I said it as nice as possible.
Ok---so this is ironic---just the other night i was talking to one of you about how I am not the type of person to whine lol and here I go :) But, mission accomplished---I feel better :)

Thursday, August 03, 2006

I love my online friends!!!!!!

Seriously, I have no idea what I would do without all of you! I have met some of the most amazing women! I was thinking about it earlier........who in the world would I call/or write to :) about different things if I didn't have all of you?

There are some that I owe so much to! Shelley for answering sooooo many of my questions/concerns---she'll never know how much it means to just have someone that is always there for this stuff!
And others, that offer prayers & support during the scary stuff---Cathy, Lin, Cindy, Monica, Deana, Jamie, Ruthie, Stacey, Angel, Monica, Katie, Ania, Florence, and Shelley again :) Well, a ton more do too, but these ladies never miss an opportunity to cheer Lauren on!!

And my night-time chats with Deana, Monica, Jamie, and Angel---it's so fun to sit back and laugh at the crazy stuff you girls come up with!

So thanks Angel & Monica for making me feel special today and for reminding me of how lucky I am to have all of you!

I love you all!!!!!!