Friday, April 9, 2010

Thank God it's Friday - Updates

So this is my end of the week rant, you can feel free to look at the lovely pictures from Music class earlier last month, and skip my complaining, but if you want to hear about one of the worst week's ever, read on.I guess I will start with Monday, since it only gets worse from there. So it wasn't actually too bad on Monday, except that my cardiac rehab is really starting to annoy me. I realize it is good for me and for my own health, but the nurses there are so not supportive. When I started less then a month ago, I was doing only 2.2 mets on the Treadmill, one nurse told me it would probably take me the entire three months to make it to 5, which was our first goal.But I had been working very hard and increasing my speed and incline every session on the treadmill and I am up to 4.8, in just a month's time. But instead of giving me any positive feedback, they only criticize me because I am not doing enough exercise at home. But it is close to impossible to find the time, and instead of brainstorming with me, they simply tell me I need to do it, like I don't know that.I will give you an example, I received a check from Holly's Granny for her present, and this was given to me prior to her Birthday around the 7th. The check has been sitting in my wallet now for over a month and I have not found time to take it to the bank to deposit it. it's not like I could not use the money, I just simply do not have a spare moment in my day until after 11:00 PM But they expect me to find an additional 3 hours for exercise and 4 hours a week for meditation, I mean are they crazy?As it is I am giving up 6 hours of my spare time a week to be in the program, time I normally use to blog, check email, pay my bills, call the doctor's office, and the plumber, ect. That I don't have any more, and its not like those things are open in the middle of the night for me to follow up on. But the thing is, if it were just the lack of encouragement and the pushing I would be fine, but they also yell at me for coughing and sweating.So here is the deal I have exercise induced Asthma. So when I am working out I will cough, well I guess there are mostly older people in the program and they are germ phobic, so they must be complaining to the nurses that I am sick and spreading germs, I am not, I am congested due to allergies and Asthma, so first they started to get on my about using hand sanitizer between every machine, then they said I was not coughing right, I should not cover my mouth but cough into my sleeve because I get the germs on my hand and then to the machine, then they said I should stay home if I am sick, but like I said, I am not sick, they even told me this the afternoon after I came from my Doctor's office.The Doctor did give me a referral to a pulminologist to perhaps help me better manage my Asthma, but she looked into my ears and throat and said I was not sick, but here they are telling me I am and can't contaminate everyone. I really try not to take it personally, but Monday was like the straw that broke the camel's back. First while I am on the tread mill the one nurse comes over to me and puts hand wipes on the bar under my hands and tells me to hold onto them because I am coughing into my hand. Not that they show any concern for the fact that I am coughing, as they should be. The after my 30 minute work out, we go to a cool down and then an education class for about 30 minutes.So the nurse comes over to take my blood pressure, just before I finish, and says, wow, I can smell that you really worked hard today (who the hell says stuff like that?) and then she says, do you want to take a shower, you sure are sweating. Well firstly I have no clean cloths with me, so I would be showering and then getting back into dirty cloths, and I am only going home after where I can shower so I say no. Then she say a moment later something along the lines of wow, you are sweaty, are you sure you don;t want a shower.I then tell her I have no clean cloths because I am going strait home. And she says, well I was just worried the smell might bother some of the other patients while you were in the education class, you guys have to sit in close quarters. So I tell her, well it is an exercise class, and the point is for everyone to sweat, so I think they will have to survive, excuse my while I go and do my cool down, and try to wipe off some of this sweat. I mean seriously, what do they expect,. Its a gym, I just spent 10 minutes on a treadmill walking a 1/2 mile, then did 900 steps on the step machine and then rode 2 miles on the bike machine, yeah I am going to be sweaty!So I go home and Holly is still asleep, I take a shower and head to our play date. Well Holly woke up on her own, just after I finished getting dressed which is perfect, she is in a better mood when I don't have to wake her up. But the cleaner has just arrived at the house and I am trying to get out the door and she is getting into all the cleaning supplies, and she is being very cranky. When we get to Chloe's she is very sensitive, and every little thing rubs her the wrong way. She trips a tiny bit and goes off the deep end. I figure she must not be feeling well, but she doesn't want to eat and she doesn't want yogurt juice. She is happy for a while when we play in Chloe's room, but for the most park she was very fussy. This surprised me since she was so eager and excited to see Chloe after being stuck indoor all day Sunday from the rain.That night before bed I check her temperature, as her mood has not improved nor has her appetite returned,but it was low grade barely 100, so i put her to bed. We had a follow up visit already scheduled for the next day. See two weeks ago we went in for her two year old well visit, about 5 weeks after she had been in for two severe ear infections, and the Doctor said she had another ear infection and fluid in her ears, and mentioned thinking about tubes.So she took the Antibiotics for ten days, she finished then last Thursday, 5 days earlier, so of course I can't imagine that she is sick. But low and behold, she wakes up screaming and burning up with a 105.6 temperature at 2:00 AM. I undress her, and put her in a warm bath (I didn't want to shock her system) and using the water as a distraction get her to swallow a dose of Motrin. She wants to like the bath, I cool her down, but she isn't happy about it, and I take her out and bundled in a towel we watch Lullaby time, Baby Einstein.It takes almost 2 hours for the Motrin to really kick in and for her temperature to drop, and for us to finally get her back asleep, but it is short lived, as the Motrin wears off at about 7:00 Am. She wakes and I get some more into her, and she goes back to sleep for a few more hours. She gets up around 11:00 and she is pitiful, she keeps asking for a bottle but then crying and pushing it away because I am sure it hurts her to drink it, but the sippy cup, and glass and straw aren't much better. She is hungry but doesn't want to eat. I try and get her too, but with little success. The around 11:45 just before we are heading to the Doctor I try to give her more Motrin, as her fever is coming back up and she vomits the dose up all over me. When we arrive at the Doctor's office it is 104.3.The doctor says she has two more severe ear infections, they are very bad and our first priority is to clear them out. She prescribes her Zithromax, as we think she is allergic to Amoxicillian, and the other antibiotic she took two times in a row and it didn't clear it up. But truth be told, the Doctor was not hopeful that the Zithromax would work either. So I forgot to tell you the kicker, why my week really started off bad. I heard back from my Case worker at regional center, and I thought everything was golden, I was happy with my therapists, the progress Holly was starting to make, how I thought the IFSP went, but then she tells me that Speech Services were denied. Not only do we not get our extra day, but they are only renewed for 3 months.The committee determined that the delay is because of her medical condition, not developmental and therefor the insurance should cover Speech Therapy. I reminded my Case Worker that I sent her our coverage information and that Speech Therapy was only rehabilitative, and approved for an illness or injury (like a stroke) and Holly did not qualify. But she said that the regional Center needed an actual denial letter detailing why it is not approved, and further more, after I get the Denial, I am required to Appeal it. And only if it is denied in Appeal will Regional center approve the Speech Therapy. I need these bureaucratic loops to jump through like I need a whole in my head. Holly has over a 50% delay in speech and though her receptive language is excellent, she has no words, I mean if you count Ma, and ba, but 9 months olds use those phrases too.This is my worry. Upon our return it took holly almost 2 months to adjust to a new speech therapist and begin to make progress again, which I am finally seeing and so excited by. My pediatrician thinks the medical group will deny the services, but upon appeal, if I "fight" it they "may" give in. But that means no more in home Speech Therapy and that not only does Holly have to have a new therapist, but she also has to have therapy at a center. A new place that she is unfamiliar with and it takes her many many visits to a new place before she is comfortable there, and not distracted, and can focus.So I fear another regression and plateau. I suppose I have three months to cross that bridge, and maybe they will deny the appeal, and if not, I will simply have to transition her the best I can. But I was not thrilled to have to cancel her speech therapy appointment on Thursday morning because she was sick,and then come to find out with ear infections, which basically are the devil's spawn actively working against any progress we are trying to make in her therapy.So we head to the Pharmacy, who gives us a hard time about filling one of my prescription, which I was over due on and missing, and I spend the afternoon calling back and forth between my new doctor's office and the pharmacy making sure it gets filled, and then when we get Holly's meds, we asked if it was flavored and they said no, so we asked to have it made strawberry, but then we come to find out it already comes in Cherry, so it had double flavoring, which she didn't like. Tuesday night she refusing to drink her bottle and only gets about 1/2 the dose of the antibiotic, which is a double dose the first night, so it didn't really do much.The next morning I insist on giving it to her with a spoon, which she hates but will do. I have been giving her the Motrin like this as well, then waiting for it to start making her feel better and then giving her the antibiotic. So Tuesday night she wakes up in the middle of the night again, miserable, we are up a few hours, get her back to bed and she sleeps till about 10:30. She wakes up in a horrible mood and doesn't stop whining and crying until almost 12:30. I had canceled PT for the morning, and then decided to call into Cardiac rehab and cancel that too. She was so clingy and needy, and if the day before was any indication, I couldn't put her down or be apart from her for more then a moment without a meltdown ,and she never napped.So by this time I am starving, and we are playing puzzles and play dough in her room the medicine is just starting to work enough that she will sit not in my arms and shows interest in play and she is seeming to cheer up, so I head to the bath room. Well our toilet has been broken for a while, the water on it runs when you flush it. It was happening a lot, and then Joel cleaned some part and it stopped doing it, so I never called to have it replaced. Recently it started to "Stick" again about 50% of the time. We usually notice, and pull up the lever and it is no big deal. So I finish going to the bathroom, flush, wash up and then head to the kitchen to find something to eat, after checking of course that Holly is happily sitting in her room with the puzzle.Something had spilled in her drawer, like a yogurt juice and it was sticky, so I was cleaning it out and got distracted and was finding food and just doing stuff in the kitchen and about ten minutes goes by, probably less in reality and I hear her fussing so I go to check on her, she is fine, but realize the hallway area rug is soaked, and in fact the whole floor is, I go into the bathroom and both of the bath mats are soaked and in fact there is about an inch of water on the floor. The toilet is "running" but I don't see water coming out from anywhere, so I pull the lever to get it to stop and grab about ten towels to try and get the water up, which of course Holly has now shown interest in.I call Joel to come home from work, as I need to figure out how bad the potential leak is, and a few minutes after that My sister arrives, to babysit for Cardiac rehab. So I get her to help mop up all of the water. A few minutes later Joel comes home and also helps and begins to investigate. Luckily it was clean water, and it did look like it was an overflow, but then got pushed through so stopped on its own, rather then a leak in the seal, but we still need to get the inside part replaced that is sticking.So now I have three soaked rugs and 15 towels siting in my bathtub, and of course Holly is signing Bath every ten minutes determined to get one, this happens all night long (she doesn't win) So I am stressed and exhausted, as I only had a few hours of sleep and it was very uncomfortable with a kicking fussing hot baby, and I am cranky and looking forward to some company after being cooped up in the house all the the day before. But my sister then tells me that since I don't need her to babysit, that her boyfriend is upset because his car is broken and she wants to go with him to take care of it.I assume this means she is driving down to Fremont with him to get it fixed, which is very stressful for him, and I am like whatever fine go, but do sort of blow up at her that I never see her any more, and then not an hour later they take off in my car, which he has been borrowing for over a month to run errands, and she tells me that he can't take his car in until the end of the week when his towing kicks in. They never do come back, I assume they went to his place for the night, I text with her a little bit discussing how I am upset and never see her, and she says she will work on trying to find more time for family.But really if I knew they were going to run errands and he didn't need the support to go to Fremont, it sure would have been nice after the hellish day and week I was having to have my sister with me. She says she is going to spend the day with me tomorrow. We were supposed to go to the Discovery Museum, but Holly's fever is still 103.5 when she isn't on the Motrin, and she is still cranky and in pain and not sleeping or eating. She didn't nap until 5:00 and that was a struggle, then I didn't want to wake her as she was finally getting rest, but she woke on her own about 8 all burning up again.So now that we aren't going to the museum, I canceled the play date, I wonder if my sister will be here to spend the day with us? it would be nice to have the company, I am so tired and upset and frustrated and have a million things to do, I haven't called the pulminologist yet, I have a stack of mail to go through, and it would be nice to have a grown up conversation. Did I mention that my Tivo is broken. I know in the grand scheme of things, this is a very small issue, but it is like a little mosquito of stress that is sucking you dry and keeps you from ever really relaxing.In addition, sick Holly likes to lay on top of mommy and watch tv, but broken tivo likes to reboot itself in the middle of little bear, holly doesn't understand why Mommy can't make little bear come on for 10 minutes while we wait for it to reboot. and I did get my replacement in the mail (another annoying thing I had to do when she was napping on Thursday I think, instead of taking a walk I was on the phone with tech support for a hour getting them to agree it was broken and send me a replacement.But now I have 34 episodes of Kai Lan, and Gabba and 19 episodes of Little bear that I need to pull off this broken machine and transfer to the replacement, but the way they do it, is they turn off service on one so it is making it hard, as the broken one can't see the other one or even my computer so i can transfer the files. this is like the bane of my existence and it takes several hours of tweeking and telephoning to tech support (which is only open until 9:00PM PST) and I also need them to activate the new one.Did I also mention that means any show I taped this week, either did not actually tape, or the tivo rebooted int he middle or end of the episode, so 15 minute chunks of tie are missing. For the most part i have been able to catch up on Hulu, but its not like I can blog while I am watching Hulu, as it takes up my screen. so it is a pain. It is frustrating that the one think that helps me wind down after a hard day is broken and causing me a multitude of stress. But there is a light, and I will fix it soon.So we have an appointment on Wednesday of next week to look in Holly's ears again and hope the infection is gone, but we are considering tubes now. In the mean time, the therapists are booked so tightly now, that there is no room in there schedule to make up the missed sessions from this week, which is so very frustrating, and Katie is out of town on Monday, so it is like a week with no therapy for Holly, and my calendar is so full now I don't have time to squeeze anything in. i am sad about missing our playdate tomorrow, we scheduled it over a month ago, to go with Miriam and Issac and there mom and Auntie who is in town visiting, and we invited Chloe to come with us. it is a new place we had never been before and heard great things about, so it is a bummer.Also tomorrow night I am supposed to go to a presentation at the Hospital about there IVF program, but with Holly sick, Joel doesn't really want me to be away so I may miss it and they only offer it once a month, yes I am supposed to be following up on the IVF and getting the referrals, I am also still dealing with the 650$ bill from the Mind Institute from April 2009. I think they are going to cover it and finally admitted it was there mistake, but seriously, a year to get this resolved?I also just booked tickets for Joel to go out of town, and for my mom to come and visit while he is away. And I scheduled our visit to small voices for next week, but No, I am not busy at all, and of course I have a spare 90 minutes a day for exercise and meditation, I only need to sleep 4 hours a night right? You think that question is facetious, but in the education class at Cardiac rehab, I asked that very thing. I said if I have to stay up until 3 am and loose an hour of sleep because I spent an hour exercising during the day, is the exercise worth the loss of sleep and the nurse teaching the class said yes.So there you have it! its Thursday night now, and I didn't get around to posting this, so I will continue on with my week. I get a call today from Cardiac rehab stating that my original Doctor never signed the Authorization for the program, and so I am not allowed to continue attending until they get some type Authorization and clearance, and the insurance might deny payment for the last month of service.My original doctor changed practices and the nurse at the Cardiac Rehab said her old office was down right rude to her when she called to try and resolve this issue, which she has apparently been working on for 3 weeks, though they never told me, even when I inquired last week if they submitted the paperwork to get re authorization for the next month. So now they are going to try and send it to the new doctor for her to sign off on, I guess I will see what happens, but I'm not going tomorrow.So this morning Holly wakes up around 7:00 am fussy, but wanting a bottle. We give her a yogurt juice with Motrin and she actually drinks it, which is great. She is still warm, but not burning up and she falls asleep for another hour or so. Daddy was on a conference call, so Mommy got up with her the first time for a little bit, then we gave her her phone to play with and to watch some video's but she is hyper and wants out of bed, so Up I get. In the mean time we get a text from Kat. Remember - we were going to spend the day together today, maybe go on that play date, but probably not. Well apparently her byfriend broke his hand that morning and they were at urgent care waiting to see the doctor.I suppose his day was much worse them mine, with a broken hand, major pain and having to go see a specialist to caste it. But I selfish as I am, I was not a happy camper. Holly was actually awake and happy by ten and I think perhaps if I wasn't so exhausted we could maybe have went on her play date to the Museum, but later that night after her only 45 minute nap she still had a temperature of about 100 once the medication wore off. She was a mad woman, dumping out every toy, bouncing off every wall, climbing on every surface. We did the laundry and cleaned out her closet which kind of distracted her a bit, and we played with Play dough about 18 times. Its her new favorite thing.I really missed not being able to hang out with my sister, I tell you, if it is not one thing its another, I mean seriously, a broken hand, how unlucky can someone get. That also meant however that her Boyfriend could not drive, and he has my car, so I spent the entire day worrying about my sister driving it with no insurance, the car has no visibility, as it is a sports car, so it is all blind spots and my sister has no peripheral vision. I was very nervous, but this was no fault of her own, just the universe telling me I will never have time with her again, and I am to forever be stuck in the house with a Tasmanian toddler.On the bright side, Joel took us both out to dinner at Barny's and I had a Chocolate Strawberry Shake and Garlic Fries and it cost only 13 dollars because I had a gift card that paid for most of the meal. Tomorrow We are skipping the swim in swim and gym, but I am going to the gym part, as this child needs to run around, and she is finally starting to feel better, the medication is doing something.

3 comments:

Anonymous said...

EEK! What a difficult week! I'm so sorry you are having so many problems! You might want to write a letter to the hospital administrators about how rude the nurses are...at the hospital where I work, they really do pay attention to letters of complaint.And I'm so sorry to hear of more ear troubles for Holly! If she gets tubes in her ears, how will that impact on her swimming and water play? And I'm sorry to hear that her speech therapy funding is so difficult!
Vicki...it can only get better! Good luck!
Love, Granny,
PS Super cute Holly pictures!

Anonymous said...

oh vicki, i can only imagine what you went thru and are still going through...hang in there, you're tough and things will surely get better, it has to :) Holly is super lucky to have you as her mommy.

leena and leelou

ST said...

I hadn't read this before you came over last Friday. What an awful week you'd had! I hope this week was better.