Monday, February 28, 2011

Call for help

Hello there,
OK - I know I have received several offers for help, and here is where we sit. Mom's hospital is ready to send her home. They wanted to today, and my sister, Tanya, told them we had to talk tonight and figure things out. She and Sean are willing to have her, but Tanya works all day, and Sean would have to help Mom on and off the potty. We both know that Mom will sneak and try to go on her own, not wanting to bother him as often as she has to go, and out of not wanting him to help her with that (which we can't blame her).
The nursing homes are not staffed well enough to be able to watch her as often as she goes to the bathroom (the last one put her in diapers, because it took them too long to get to her - and even left her on bedpans way too long), so she would end up getting up unsupervised, because she couldn't wait, and that is if Medical would even cover it.
What she needs help with, is someone to come to my house and spot her as she gets up and down out of bed and on and off the toilet - and mostly making sure that she has absolutely NO weight on her right leg (she tends to claim she is just touching her toe down to balance, but puts weight on it as she uses her walker). So they would have to have time, and be able to stand up to her and not let her put that foot down while walking with her walker, and walking beside her, able to support her if she loses balance, so she doesn't fall again.
The hospital here still hasn't told me what they are doing about Lucy, they need a few more days to figure out what is causing Lucy's problems, and the best solution. They can't send us home yet, because her sodium is still too low, and they are giving her IV steroids hoping it is swelling causing the problems, and that the steroids will help that, and stop her issues. They will give her PT and OT here as an In Patient basis.
I had received an offer from our cousin Crystal to come and help, as she just finished her CNA, and was available - so we thought that was the answer. But upon reading her offer again - she isn't done with school until March 16th, and I need the help for 3 days up to 3 weeks starting Wednesday.
So if anyone is available, and can handle being very firm with Mom about no weight (she will argue that she isn't putting weight, when she is), and be able to spot and help her getting up and down as needed - that would be greatly appreciated. Please email me and let me know if you can help, and what your availability is.
Thanks again so much!!!

Some complications....

OK - so Mom is doing very well, and coming home to my house in the next day or two. She should be much easier to care for than she was last year this time, as only her hip is injured, and not multiple fractures and/or breaks on her right side. Also, she is hoping to be helpful to me by helping with homeschooling Emmie and/or Lucy during this. Another deciding factor, was that even if she agreed to let Sean take care of her during the day, she wasn't comfortable with it - and would most likely try to go to the bathroom on her own (not wanting to bother him) and possible fall and start the process all over again. So it really is best that she come to my house.
Lucy, however, has encountered some problems. She can't walk, due to her right leg having issues connecting with her brains commands. Also she has trouble sitting up on her own. She is very frustrated by this, and down in spirits over it, as well as her hair (she says she looks like a boy - but I told her after a week, when we can wash and brush it, she will see it isn't as bad as she thinks; as well as the fact that people love her for her personality, not her hair), the IVs (her nemesis in the entire thing), etc. Also her sodium levels are low, and despite her high sodium IV, these sodium "shots" she has to drink every 3 hours and loads of bacon, Doritos, etc - we can't seem to get it up. This is important because your sodium level dictates whether you are storing fluid inside our outside the cells, which affects the swelling and healing. She loves visitors (especially when they stay to play a game with her), and is so homesick for her siblings and poochie.
Sweet Krista (my new sister - no, Travis didn't propose yet, but we got tired of waiting, she is my sister in heart no matter what he does), Travis, Tanya and Cheri have helped out and visited with Lucy. She is snuggling in bed with her silkie (her favorite possession in the world), her Ladybug Pillow Pet (from Grandma Betty and Papa Ken), her Pink Puppy and rainbow blanket from her Activity Day leaders and friends from church, her stuffed dolphin from Aunt Tanya, a snugly blanket made by volunteers and given to each child patient here to keep, and a cute little bunny that came from her surprise visitor - her former 2nd grade teacher Mrs. Carver. It was such a surprise, and Lucy and I still can't stop talking about it. That was so sweet for her to come, and we didn't even know if she was still getting our emails, or knew about the surgery.
Today OT, PT and the Neurosurgery associate came in to see her and check things out. They are assuming it is due to swelling, and have been continually upping her steroids to combat that. They aren't sure if it will be a week or a year - but are hoping that it is temporary. Next we have to see what they are going to do with her. Either they will keep her here and do aggressive therapy and see if that works over the next week. Or they might admit her to their Rehab facility (still in the same place, on the same floor), and she could be here for a few weeks or more. Possibly some rehab her and then move her home for outpatient rehab (either in home, or me driving her to therapy). Not sure until they have a pow-wow with each other and decide what is best.
Ryan has spent the weekend in bed, fighting of a chest cold that is trying to turn into bronchitis, and sweet Emmie has been holding down the fort! I am throwing around ideas in my head from offers to help and will know better hopefully tomorrow as to what the plan will be. I am happy to say that last night, we actually were able to get a little rest. They still come in every few hours for vitals, and her nasty medicine - and she wakes to go to the bathroom several times a night, but we did rest. Today her roommate went home, so we are wondering if we will have an even quieter night tonight. I must say, for all the hospital fold out chairs, this one is the most comfortable.
Thanks again so much to everyone for offering to help, and for your love and prayers. We can't thank you enough, and feel so blessed to have such love and support for our family.

Saturday, February 26, 2011

Hospital Hopping - Updates again

So last night around 10:30, I went over to visit Mom at Mercy Hospital, while Krista stayed with Lucy, and Tanya and Sean arrived shortly after I left to visit her also. Then came back and have stayed with Lucy the rest of the time.

Mom is out of surgery, and doing very well. They didn't think she would make it, yet she pulled through with flying colors to the shock of the surgeon and his staff. They only put pins in, and she will need to schedule a partial hip replacement surgery most likely after she gets stable with her liver disease. They messed up last night, and gave her two batches of platelets, and she was supposed to have gotten one batch this morning before surgery. However, it was a wonderful, God send, because when they ran her blood this morning, it was down 1 point from last night. So her body is just eating up the platelets. So then they gave her more, and kept giving them to her throughout the surgery. They plan on keeping them going for the rest of her hospital visit. They will do some rehab with her, and then it is time to care for her again - with 6-8 weeks of no weight at all on her right leg. We are still working out who she will stay with when she gets out. She will need someone to help her with all of her care - food, getting on and off the potty, getting showered, to PT and doctors appointments, etc. Cheri has a 1-story house, but she is gone at work, and looking to get a second job. Tanya and Sean can put a bed in their living room of the bottom floor - but Tanya works all day (it's tax season), so Sean would have to help Mom on and off the potty - so that isn't ideal. For Ryan and I, we have a split level house, with not one floor being on the ground level. We would need to put her in the bottom level by completely clearing out our office and putting it somewhere else in the house. It is a very small room, and will barely fit a hospital bed, commode and TV stand for her - but there is a bathroom on that same level, and there is only 3 steps to get to the garage level to get her in and out of a car when needed for therapy and doctor appointments. It really is the best option, because I am home - and can best care for her without any embarrassment to her. I will be caring for Lucy at home, and still homeschooling Emmie as well. But Mom is worried that I have too much on my plate, and although she wants to come to my house again, she is fighting it, because she doesn't want to put any extra stress on me. So we will work it all out, and let you know what happens. But as for now, she ate lunch after her surgery, and is now resting well.

As far as Lucy, she is doing really well!! She is currently in for a post-op MRI, and they are trying it without sedating her. If that doesn't work, we will have to wait and do it again. She is such a trooper, and a funny girl. She uses the doctor 1-10 scale for pain very well and accurately. Although, she doesn't complain as much about the head pain, as she complains about the IV's (she had 4 of them in at the same time, and now is down to three), as well as the bandage on her head going around under her chin, the blood pressure cuff, the oxygen monitor on her toe, etc. When I asked her where she wanted to be - if it could be anywhere in the world, she said "Home, I want to go home". Even when I told her that she could choose anywhere, even the Bahamas or Hawaii - she still said "Home". She is feeling better though, and playing on the DSi off and on. She has learned that hospitals are loud and hard to sleep in. We have been so blessed with such wonderful staff though!! All of her nurses have been amazing, although her favorite it her current nurse, John. He was the first to let her eat anything, and he can flush out her IV's and give her meds in them without her feeling it (she is very sensitive to her IV's). But Melissa (both in PICU), and her recovery nurse, Iedia (not sure of the spelling, I didn't look at her name tag) have been such a joy. Also, we had a nice visit from Dana - who works here, but is also very involved in Aquasol, Emmie's swim team - who let us know that if we needed anything to call her.

I hope this makes sense, I am going on very little sleep over the last 4 days. :-)

We are so grateful for the wonderful care, and love and prayers from friends and family. I'm so sorry I don't have time to respond individually to all of your emails, facebook and blog comments - but please know I have read every single one, and shared with Lucy your love and concern. I will let you know if we need anything, and appreciate all of the offers!! It is so amazing to feel such love and support from so many fantastic people!! Thank you!!

Friday, February 25, 2011

Another Update

Hello there. Gotta keep it short, as I need to get back to Lucy. The surgery was harder than the Neurosurgeon thought (due to some of her veins), and so there was some concern. But she seems to be doing great. She was just moved from recovery to Pediatric ICU. We will stay there tonight, and then she will have another MRI in the morning.

Mom, on the other hand is a scarier story. She is having surgery in the morning - but they are very concerned at the high risk of her not making it through the surgery due to her liver problems. They opted not to do the better surgery, because it would be way more dangerous. They are just going to do a 20 minute surgery (1 1/2 hours total time), because her odds are better of living through it. The odds of it fixing her hip are about 25% - but risk is very high. So keep her in your prayers please. I will update again when I get a chance (only a few places in the hospital I can use the Internet, and I don't leave Lucy alone at all, because it scares her.

Thursday, February 24, 2011

What a night!! Update....

So, things are crazy as usual. First of all, our van decided to have issues, and need to go to the shop. Dropped it off last night, and they had to order more parts, and it won't be done 'till tomorrow. I had mom come over at 11:30 today so I could try to get everything done before taking Lucy in tomorrow for her surgery, and then she was to stay the weekend here so she could help with kids while Ryan was at work or visiting Lucy and I at UC Davis. While I was in my office working on some paperwork, I hear a thud and my mom moaning. As I ran up the stairs, Emmie was running down telling me that Grandma fell.
Mom had been playing "Grandma Butterfly", where she wears this wrap, and flaps it like wings and chases the kids (at Grandma slow pace), and catches them in her wings, hugging them. The other kids follow behind and "save" the captured child. Well, Nathan was being captured, and stopped - and mom had a forward momentum and lost her balance - while the girls were closing in behind her. She didn't want to step on Nathan, and ended up falling on him instead. They both hit the floor, and Nathan's biggest issue was that he was stuck, and then when he got free from under her, he was very upset that his snack was still stuck under her. Mom, on the other hand, couldn't move. Against her pleas, I called 911, and had an ambulance come and get her.
I rode with her to Mercy Hospital in Folsom, where it was determined that she had fractured the neck of her femur. The surgeon was planning on doing surgery tomorrow - but with her health issues, and former surgery issues with bleeding - he has decided to wait and consult with her other doctors before making any decisions or doing anything. She will be in the hospital for several days (Lucy and I may be out before her). Then it will be most likely back to living with Ryan and I so I can care for her - but we will cross that bridge when we come to it.
As far as Lucy - we have to check in tomorrow morning at 7:15am, and she will have her MRI at 8:30am and her surgery at 11:00am if all goes on schedule. She will be in surgery for about 4 hours. I probably won't have Internet access in her room, but will update the blog within a few days on her progress (as well as Mom's progress).
I just got home from the hospital where Mom is, and wanted to update everyone. So she will be in Room 207 at Mercy Folsom, and Lucy will be at UC Davis (no room yet, obviously). I gotta go get packed, and get to bed, since I have to be up at 5 to get ready to go to the hospital with Lucy.

Thursday, February 10, 2011

Can't sleep

So I went to sleep last night around 11:30 pm, and woke up to the TV still on and Ryan snoring at 1:15 am, and couldn't get back to sleep. I figured if I got up and worked on the bookkeeping, that it would make me sleepy - but no such luck.

It's awful - 'cuz my eyes are burning, my body is tired - but my stupid mind won't stop going a mile a minute! It has been that way for days now. Normally I just lie in bed, trying to shut my brain up, toss and turn until morning. So tonight I did that for about an hour and a half, and finally just got up and came down to the office. It's 5:00 am now, and the alarm will be going off in about and hour and a half - and I am still nowhere near getting my head to quiet down.

What's so crazy is the stupid stuff my mind obsesses over. Like I'll get a song stuck in my head, and can't get it to stop replaying over and over; or I will replay my stupid moments over and over, trying new endings (not that I can go back and change it - so that's a real waste of brain power). Most of it is worry over my kids, and my failings as a mother and person.

Now I'm second guessing even posting this... but I guess that I should, because that is what I love about my friends blogs - they put it all out there, good and bad, crazy and sane, happy and sad. Maybe someone is up reading this, 'cuz they can't sleep either! If so, I'm sorry my friend, I feel your pain! :-)

Well, off to go rest my eyes and body - and pray that I might get a little sleep (since napping is a very rare treat with my schedule).

Emmie's Scholarship

So we found out tonight that Emmie was chosen for a $1000 scholarship towards her Ambassador Program. She had to write an essay and submit it with a complete application and her community and school activities. They had said they were calling the winners, and posting it on the website by end of business Feb. 8th. So when we didn't receive a phone call, and nothing posted to her account, we thought she didn't get it. Then tonight, I looked on her account, and there it was!! We were so excited! Ryan took Lucy out to get a cake, and came home telling Emmie it was for me, because I was having a rough day. He told Emmie to take it out of the box while he went to get me from the office - and much to her surprise, the cake said "Congratulations Emmie on your scholarship".

Scholarship - $1000
Cake to celebrate - $12.99
Emmie's reaction - Priceless

This was so awesome, because we were really worried that she wouldn't even come close to making it without scholarships. She is still babysitting, selling homemade hats, jewelry and flower hair clips, Razmatags fundraiser, etc. Slowly but surely she's chipping away at the cost of the trip.

Tuesday, February 8, 2011

Lucy's Surgery Date

We got a message on our machine while we were out today - Lucy's surgery is set for February 25th. They will be doing her pre-op stuff on Monday, February 21st. We will have more information then, and will keep everyone updated throughout the process. She is so amazing how she is handling it. Tonight, we talked some more about her hair being shaved, and she made jokes about it. We know she is nervous and scared, but she is so amazing!! We are so grateful to have her in our family, and love our dear Lucybug!

Monday, February 7, 2011

Mom Updated

OK, so some of you keep asking me about how Mom is doing. She is still waiting for a 4-phase ultrasound of her liver before we will have any new information. She was set up for an ultrasound, but then found out the day before that it was only a 3-phase, and had to cancel. That lab didn't do the 4-phase, so she is having her doctor refer her to a lab that does. As soon as we know anything new, I will blog and let you know. :-)

Thursday, February 3, 2011

Emmie's Exciting News!!!


We have all been so caught up with Lucy and her surgery, that I haven't posted yet about Emmie. She was nominated to be a People to People Student Ambassador, representing the United States in Australia. We aren't sure who nominated her, a teacher or a coach.

The People to People Ambassador Program was started by President Eisenhower in 1956, in the hope that bringing young people together throughout the world, would bring about future global understanding and world peace.

After the referrals and interview, Emmie was accepted into the program. She will get to travel to Australia this July for 17 days. A few things she will be doing is going backstage at the Sydney Opera House, Snorkel on the Great Barrier Reef with a Marine Biologist, learning about the ecosystem, spend time with the Jawoyn people and learn ancient traditions of the Aboriginal people, meet with a member of Parliament in their meeting place, and learn of their governmental system, help meet a local need through a group service project, etc. I could go on - but it is a great educational opportunity for her (as well as a thrilling and fun adventure). She will receive college credit for it, helping her start early. She is so very excited.

The tough part (aside from letting our baby go so far away), is that she has to raise the money for her trip ($7,000). She has applied for a scholarship for $1000, and is applying for a few more. She is doing babysitting, getting business sponsors, and doing fundraisers. One of them is making these adorable flower hair clips (the ones that are popular now), and we have made over 200 so far. I will post a picture as soon as I take one and upload it.

Also, she is doing a Razmatags fundraiser. If you go to www.razmatags.com/?org=Emmie and place an order using the code: Emmie - at checkout, she will get earn 25% of each sale towards her trip. They are really cool tags - that are Personalized, Water-proof, Dishwasher-proof, Laundry-proof labels (for clothes, dishes, sports equipment - you name it) as well as luggage tags and other cool stuff. You just go online, place your order, pay, and they will ship it directly to you. So no matter where you live, you can get them!!

This is what we are starting with (I'm a little swamped right now with everything going on - so I can't take on more than this). So if you start getting emails from Emmie with her fundraiser ideas, please check them out and see if it is anything you can use.

Still Waiting for Lucy's date

We want to thank everyone for keeping us in their thoughts, hearts and prayers. I keep getting many emails asking the same questions, so I am going to answer them now. We still don't have a date for Lucy's surgery. We were told it would be in February, and we would know by now. I will call and bug them again on Monday. It was after months of careful consideration of all the options (waiting, chemo, clinical trial drug, etc). After we talked again with the Neurosurgeon, Dr. Boggan, at UC Davis (check him out on the web - he is amazing), we knew we needed to do the surgery. At this time, her brain has shifted functions to other parts of her brain, and is actually moving away from the tumor, creating a pocket. Also, the tumor has become encrusted with a growing cyst. So the risks of paralyzation are very low, and the chances of getting it all are very high, not to mention that the cyst itself could cause problems, and needs to be drained/removed. Of course, there are no guarantee's, and any surgery is risky, brain surgery not excluded. There could be tiny, microscopic particles that we cannot see, that would be missed and still pose a risk to go malignant and shorten her life span, but that's only a maybe, and can't be helped.
Lucy is so cute! We were fasting as a family on Sunday, and after church, Lucy walked out eating a piece of chocolate. I explained to her that just as we start our fast with a prayer, we need to say a prayer to close our fast, and ask for the confirmation we were seeking. I told her she could say a prayer in the van on the way home, and listen for an answer. Upon arriving home, all the kids were hungry, so we told them we would say a family prayer to close their fast. When I called Lucy in, she told me "It's OK Mom, you don't have to pray or fast anymore, because Heavenly Father told me to have the surgery". I asked how she felt about it, and she said she felt calm and happy about having the surgery. I explained that I was happy that she had a confirmation for herself, but we still needed to close our fast as a family. She didn't get it, since it was clear to her that she already had an answer. Our entire family had a peaceful feeling and confirmation to our prayers. We are so grateful for the gospel in our lives to guide us and give us peace during difficult times. We are also so grateful for such loving and abundant support from friends and family. Thank you!! I will post as soon as we have a date!