Pictures

Here is the family picture we took with the Haughery side on Thanksgiving.
Back row- James, Me, Alivia, Uncle Howard (Bill's little brother), cousin Hannah, Vivian, Matthew, William
Front Row- John, Cynthia (Nan), Bill's Mom (Mamaux), Bill (D-Dad), Cousin Nicholas and Christopher
Notice Hannah trying to get a look at her cousin Alivia.


Monday night Erin came over for dinner. She has been living in Mechanicsburg since we spent time in the hospital. We miss her like crazy but it is much closer to work for her. So instead we try to kidnap her frequently. We love you, Erin

Thanks to the Minichs for the yummy dinner Monday...there was enough to feed Erin too. Thanks to Mike and Joanne for the sweet bear puzzle. Livi has it all figured out and does the signs for the emotions on the bears face. Its really cute. She just loves it.

Later I'll post some shots of our Christmas decorations. We are down with the nothing. But half way done with a lot. Still need to hang wreaths outside, finish putting lights and ornaments on the tree and put the little tree up for Alivia. We have fake trees (cause I'm allergic) so we can put them up whenever. During nap today will be completion of the big tree. (Thanks for the tree Bill and Cynthia). We started last night but ran out of lights. Oh and found out the tree is too tall for our living room. It just sort of ends flat. Pretty funny.

Pictures

Here is the family picture we took with the Haughery side on Thanksgiving.
Back row- James, Me, Alivia, Uncle Howard (Bill's little brother), cousin Hannah, Vivian, Matthew, William
Front Row- John, Cynthia (Nan), Bill's Mom (Mamaux), Bill (D-Dad), Cousin Nicholas and Christopher
Notice Hannah trying to get a look at her cousin Alivia.


Monday night Erin came over for dinner. She has been living in Mechanicsburg since we spent time in the hospital. We miss her like crazy but it is much closer to work for her. So instead we try to kidnap her frequently. We love you, Erin

Thanks to the Minichs for the yummy dinner Monday...there was enough to feed Erin too. Thanks to Mike and Joanne for the sweet bear puzzle. Livi has it all figured out and does the signs for the emotions on the bears face. Its really cute. She just loves it.

Later I'll post some shots of our Christmas decorations. We are down with the nothing. But half way done with a lot. Still need to hang wreaths outside, finish putting lights and ornaments on the tree and put the little tree up for Alivia. We have fake trees (cause I'm allergic) so we can put them up whenever. During nap today will be completion of the big tree. (Thanks for the tree Bill and Cynthia). We started last night but ran out of lights. Oh and found out the tree is too tall for our living room. It just sort of ends flat. Pretty funny.

Thanksgiving and the like

This was such a nice holiday weekend. We got to spend Thanksgiving day with James' family. Chris made it home from Boston so everyone was together. The table had a sweet baby girl at the head (Alivia) and a sweet baby girl at the foot (cousin Hannah). They are only 4 months apart and spent the holiday trying to figure each other out. Alivia is so used to being around big people she wasn't sure what to make of this person the same size as her. Even Livi's little friends are bigger than her. Hannah is probably the first person Livi can look right in the eyes. Pretty cute. We had a suprise visit (at least for me) from Mamaux and Uncle Howard (Bill's mom and brother) towards the end of the evening. Its been ages since we've seen Howard and it was fun to catch up and joke around. We took lots of pictures (William send me a family one so I can post it). I made the desserts (mentioned that already didn't I?). My helper and I made 4 desserts....pecan squares (taste like pecan pie my husband's favorite), apple cream pie, sweet potato souffle and chocolate trifle (for the no-pie people).

We decided to head to Indiana that evening to make travel easier for Alivia. It went well but she got a little over excited when we got there and realized that Gigi and Grandpa were awake. She had a bit of trouble getting back to sleep but finally did around 2. Friday we all spent the day enjoying Alivia (and each other). Saturday my Marmie (grandma), Aunt Lisa and Uncle Rob came to visit (See the above photo). Livi was a charmer as always. We played Scrabble while she napped (I won) and the boys watched football (lets not talk about who won). James and I had planned to go to my 10 yr reunion...till I looked at the invite and realized it was Friday night so we missed it. They'll have another one...in 5 years. All in all it was a great weekend. So much to be thankful for. Here are just a few things.
...my salvation
...James
...great counts last week and no visit till this Thursday
...Livi's new trick
...safe travel for everyone (to and from Boston, N. Carolina, Virginia, and Lancaster)
...Grandpa, Gigi, D-Dad, and Nan
...Livi's uncles (Matt, Andrew, John, Aaron, Chris and Will)
...Livi's aunt (Viv)
...Livi's cousins (Nicholas and Hannah)
...our extended families
...our sweet friends

Thanks.

Please continue to pray for Alivia's healing. Pray for her diaper rash (the meds are making it almost impossible to fight off and changing diapers just brings her to tears from the pain).

Don't forget to check this blog for more educational info about the transplant. It will make it so much easier to understand what we're going through when we're in the middle of it. (I wont' have to explain terms)

Baking Pies

Every year I am in charge of desserts for Thanksgiving (I love baking!) and this year I had the sweetest helper. She wanted to help with everything. I loved it.



And she got really brave and tasted some new foods...An Orange for one (honey and a pecan too).

Quickest visit ever

Today's visit to the clinic went so well that we are not supposed to have to go back till next Thursday. That would be the longest break so far. It's exciting but makes me nervous too. Every other time there has been a big break in the visits we have had some emergency that lands us right back at the clinic. But we'll pray for the best.

WBC's were the lowest they've been in quite a while...24. Not bad at all. And RBC's are normal or right around normal. Platelets were the only thing to go in the wrong directions...down to 46. But still not the lowest we've had. Still no signs of chicken pox but they wouldn't show up till at least the 28th. Still waiting. The rash is all but cleared up and she is still being her hilarious self. She isn't eating quite as much cause they are slowly cutting back on the steriods. I can't wait till they are all gone.

I am getting sick now. I was up most of the night with a stomach ache. I could use lots of prayer. I would love to be able to relax and enjoy this holiday. Thanks everyone

By the way Rachel and I are going to be posting medical, educational info on friendsofalivia.blogspot.com along with the fund raiser info. (You can click on it and go right to the site) I ask that you all go and read the posts. They will explain things so that when transplant rolls ar0und I will be able to through around terms and you will all understand them. They will start basic and become more involved as we get closer to transplant. Thanks for taking the time to read them.

Happy, Happy, Happy

Happy 28th Birthday to my amazing husband James and happy 20 months old to my sweetie sweet little girl, Alivia.




Alivia got new Elmo slippers...she is so proud of them.

Shots, Rashes,. Oxygen and immunization

Friday's shot was a bit more than I bargained for. I called the clinic in the morning and they said that I just needed to come in and they would give Alivia the shot. The goal of the shot is to lessen the severity of chicken pox if she gets them or to negate the chance of getting the chicken pox. Well we got there and while we were on the way there they realized that the company that had been making the shot stopped making it. So there was a new, experimental version that we were going to be given. I had to read a bunch of papers, meet with the nurse and the doctor and sign waivers. After we got the approval to be in the study they gave the shot and then we stayed around the clinic for a while to see if she had an allergic reaction. She didn't so we got to go home. It was a hard for me to sign those papers but the alternative was the risk of chicken pox which will be horrible at this point.

Saturday she developed a rash. It is all over her right leg and some on her left. It looks like rashes she's had before and is very itchy. We talked to the nurse triage today and they thought it sounded like a normal rash from some sort of irritant. So we will call the clinic tomorrow and see if they feel the same way. There haven't been any other problems with the rash (fever, shortness of breath, lethargy, etc) so I"m not worried. I just feel bad for her that she has it.

Friday night the alarm on the oxygen compressor kept going off. We weren't sure what it meant but noticed that Alivia's O2 was hanging out around 93%. This is much lower than it had been at night with the oxygen so I was a bit nervous (didn't fall asleep till after 1). But it held steady at 93 or 94 so I went to bed. The next day we check the machine and the canilla (the thing that goes in her nose) and realize that it wasn't working at all. That meant that she went a whole night without oxygen without us realizing it. She hasn't had oxygen since and the levels have gotten better each night. Also the doc said that her lung x-ray we had on Thursday looks almost completely normal. Woo Hoo.

The exposure to chicken pox has brought up the issue of immunization. Not for Alivia but for others. We asked the doctors what to do about being around other kids that weren't immunized in the future and they said that it wouldn't be a good idea. They said for at least a year after the transplant we shouldn't be around anyone that isn't immunized. This has a huge affect on our lives. We knew that being around any kids would be not possible but a long time but didn't realize the rules would be different for kids who aren't immunized. That means that until at least a year after transplant our family won't be able to go to church together again. This is a hard realization for us. I knew that after the transplant church wouldn't be an option for at least 6 months. I didn't realize it would start so soon but for Alivia this is the safest thing and so this is what we have to do.


Please pray that the rash clears up, that there are no adverse reactions to the shot and that she doesn't get the chicken pox. (at this point the chicken pox would probably mean pneumonia, liver damage and possible cataracts).

Home

We are home. I admit I was a bit scared that they would try to make us stay for some crazy reason. But no...I think I did a sprint out of the office when the said see you.

Here are the results for today. Alivia got a chest x-ray but we don't know the results cause it was so busy our doc didn't get to look at it. But she did so good. She didn't even cry during the x-ray. The steriods make her a bit hyper so she is pretty much always happy....usually it makes kids cranky so we love the happy hyper side affect. Her red blood cells are completely normal (for almost a week now!) which means rosy cheeks. Her platelets came up a bit more to 55. That is pretty high for her (normal is well over a hundred but we'll take an increase) and her WBC's went up to 45 but the doc said the steriods can do that too. Her spleen is still smaller (the same as last time he felt it) but last time he felt it he was shocked at how small it was so thats good. Her belly is huge but its from all the food she's been eating. She's gained 2 lbs since Monday. She weighs more than she's ever weighed (23 lbs 10 oz).

The only upsetting this happened in the last few minutes of the visit. We found out she had been exposed to chicken pox. Turns out another patient thought they might have it but didn't mention it to the nurses and so was just sitting in the waiting area. We walked by or were near them for a while and since it was the early stages it is highly contagious through the air. Being on steriod and having a supressed immune system makes the chicken pox a huge threat to Alivia. the doc said it would be "devastating" if she got them. So we are going to go back to Hershey tomorrow to get a shot that will hopefully keep her from getting them. She won't be allowed to get the immunization for chicken pox till the spring so pray this works.

Wanted to remind everyone to check out friendsofalivia.blogspot.com for info on fundraisers, event and more in depth medical info. We will be keeping that sight up to date and it should be very informative.

Also anyone in Indiana who wants bracelets....my dad has them. So get in touch with him.

Back Again!?

It's Thursday, which means back to Hershey for our weekly check. I would rather skip it but its important and hey we haven't been there in sooooo long. Yeah right. I admit I'm nervous they will admit us again.. not because she doing poorly but because thats what happened the last time we went for a check-up and because we made plans for this weekend. It seems like if we have a completely open schedule nothing happens but if we have fun things planned...

They sent Alivia home with a bunch of new medicines. Some just for weekends and some for every 8 hours. And one Steriod. Let me just tell you it makes her eat. I mean eat like crazy. I can barely keep up with her. Its insane. Overnight last night she woke up and ate a total of 24 oz of formula!! This from a girl who would maybe eat 15 oz in a 24 hour period. I just keep thinking there can't be any more room in there and she squeezes more food in. I won't be suprised if she gained back all the weight she lost in the hospital. That would be great and would make all the getting up at night worth it. I don't pick her up at night for the bottle because of all the tubes from the oxygen machine and the pulse ox machine. So I end up standing beside her bed holding the bottle so she won't wake up too much. That way she goes back to sleep after the bottle. I think she ate at least every 2 hours last night and she didn't go to be till 11:15. Needless to say I'm a bit tired.

Please pray for our friend C.B. who is taking his 3rd test (not sure of the name of it) towards becoming a doctor. *he's going to laugh at me when he reads how I described it....stop laughing you!

Please pray that Alivia's counts are good, that she doesn't need blood and that we get to come home. Thanks

Hospital Pictures 2

A few more shots from our 10 days in the hospital.


We borrowed some toys from the play room. Here is Alivia riding the rocking fish. She loved it.


Alivia sitting in the "big girl" chair with a few of her favorite friends.

Once the finally let us leave our room she had to wear a mask. So we said it was her special race car mask. She did a great job keeping it on. What a big girl.

Hospital pictures.

Here are some sweet pictures of Alivia from the hospital. She is so amazing and does a great job even when she's in a scary place like the hospital.


Trying on Grandpa's Glasses



Talking on her cell phone on the floor of her room

Giving oxygen to Big Bird through the mask she had to wear in the intermediate unit.

We're Home!!!!!!

I wanna go home

yes we are still in the hospital...no there is no sign of us ever getting to do home. For the last three days nothing has changed. during the day she is 98-100% oxygen saturation on room air... meaning no help at all. Then she falls asleep and she drops (after a while) to 88-90%. Alarms go off, nurses come running and we end up hooked up to the blow-by again (air blows by her face). Normal room air is 25% oxygen and we are on 40% oxygen in the blow-by. Now the idea is that we need to make it through a night without going below 91. What if this is normal for her? what if it has always been this way and we jsut didn't know? if that is a fact then they shoudl send us home with oxygen for when she sleeps. people go home with oxygen all the time, they go home with heart monitors for goodness sake. I am tired of being here. We only have so much time before we will be here for at least 6 weeks. why not let us enjoy some time at home, as a family? We don't get sleep here, we don't have enough time with james becuase by the time he gets off work and gets up here its 7 and she's already winding down for the evening. She is still accessed (meaning a needles is sticking out of her port) which means she could get an infections. it is covered but there is that change the longer it is accessed. I am giving her all of her medicines by mouth and I am the one who sets up the oxygen when the alarm goes off and I am the one who puts the sensor on her to read her pulse oxygen level. Why can't I do all of that at home? I am feeling so hopeless. Each time we hook up the oxygen tube it means another night here. Besides checking vitals the nurses dont' even have to come in our room.

pray that the docs have mercy on us and send us home with oxygen. pray that her port doesn't get infected. pray that I don't freak out and start yelling at someone. Pray that the little time we get to see James is enough for now (personally I want to spend all of my time with him and no time is enough..but thats another story)

few more days

we will be here at least a few more days. i am truly struggling with it. i know it is the best for her but at the same time I think being home and able to play in different rooms and even able to go places seems like it would be even better for her. Last night her oxygen levels dropped again..but not as far. They don't want to send us home on oxygen. At this point I think it wouldn't be a big deal to be at home with a little bit of oxygen. I can watch a monitor at home as well as I can here. We are desperately trying to get permission to take Livi out of her room. I'm not sure they will let us. but in the intermediate unit she shared a room with someone so how is her walking down the hall any worse?

My dream was to not bge in the hospital at all till the transplant but here we are on day 9 and no idea when exactly we'll get to go home. This is just a tiny glimpse of the 6 weeks for transplant. I am dreading it.

Grrrrr

we can't go home till we have 24 hours without oxygen. She wasn't on oxygen from 6-11 tonight but as soon as she falls asleep her stats drop and we are back on oxygen. don't know how long that will go one. it is pretty frustrating just being here for that. all her meds are now oral, she isn't even on any IV's and so she just accessed for no reason (just in case) and we'll be here indefinelty. obviously it will be at least Sunday now before we're home. Even if she spends the entire day off oxygen tomorrow we have to make it through tomorrow night without it. pray for strength for me and for everyone else. nights here are so long and no one gets much sleep. its hard to entertain her all day long in the little tiny room when she feels fine and would like to be running around playing. At least tomorrow she'll only have to pulse oxygen monitor so she'll be able to get around faster. I definelty think its harder to be here when things are going well then going poorly (not that I'm wanting poorly). but when things are going really well you just want to get out while you can and its hard watching another day go by with no hope of going home.

obviously i'm overtired and a bit discourage tonight. excuse my ramblings.

no....

We won't be home till at least Sunday. they want a full 24 hours without oxygen and she still needs an oxygen boost whenever she sleeps. She is on the smallest amount when awake and we've been taking it off completely sometimes so she can play. I have some super cute hospital pictures that I will post once we finally get home. At least there is an end in sight..but it is a bit deflating. At least she's doing better and not worse. She took the steriod with no problems so thats one hurdle down.

Home?

There is talk of us going home today...or tomorrow. We just have to get off the oxygen. She is allowed to eat and drink whenever she wants. She is in a great mood despite the frequently interrupted sleep last night. They are weighing her frequently to make sure she is getting rid of enough fluids..if not she'll need more lasiks. In fact she finally fell asleep for a nap and they came in 20 min later and weighed her. We had another chest x-ray (that makes 4 in a week) at 6 am. They are switching her antibiotic to an oral one and also switching her steriod to oral. Please pray that she takes the steriod. It doesn't taste good and is twice a day. We are going to start with crushing it and putting it in yogurt...the doc said that even adults wont' take the liquid cause it tastes so bad...and they understand why they are taking it. If her oxygen stays at a good level (even while she is sleeping...which is really hard to do) then we will be home today. I cant' even imagine sleeping in a real bed with no bells or whistles going off...and no masked people entering my room at random hours of the night. The other night I woke up and a large man with a mask was quietly entering my room. It took a moment to realize that it was a medical person. I laughed to myself because that just shows how weird my life is. Any other time or place a large masked man enters my room and I freak out completely. But this is just normal for hospital life. I'm ready to be home.

Long day...good day

Things have been improving with Alivia throughout the day. She is getting less and less oxygen. And her counts were really good. The port finally started to work after 2 hours of the drain-o type med staying in it. So news wise it was a good day. It was just a hard day because none of the care was coordinated. There were no naps and I am so incredibly tired. Livi finally feel asleep....about 20 min ago (its 7:30). I tried to get a nap but the alarms kept going off and each time I got her to sleep someone new came in and woke her up. Hopefully tonight will be an easy one and I can get a bit of rest....and Livi too. both of my parents are staying here so that will help.

Thanks to the Eckman's for the dinner and gift. Livi is using the pillow (thanks Ruth) for her dolls to sleep on and we hung up the picture (thanks Lydia) on our bulliten board.

Port Drama

Well we got re-accessed (thats the 5th time since Friday!) . All this because no blood was coming out of the port for labs. They tried everything but sometimes the pipes just get gunked up. So we had a break with no access (her skin could breath) and took a much needed bath. The best suprise was that Holly from the clinic came up and did the access. I was so excited to see her and it was nice knowing someone who knows Alivia so well was doing the access. Its hard when I don't know the person as well....and today it would have been someone from the IV team who I had never met. But instead....HOLLY! I loved it. Thanks Holly...it was so good to see you. I miss the clinic nurses already and I'll probably see them all next week. I want to kidnap them all and make them transplant nurses so that they can be with us during the transplant. (not that the nurses are the floor aren't great..they are...i just know the clinic nurses better)

So all went smoothly with the re-access but the port still didn't give blood! Yikes. So we are waiting for a medicine called TPA that is sort of a drain-o for ports. It will go in and sit in the port for about an hour or so and hopefully clean it all out. It never enters the body and just sits in the tube. If that doesnt' work I have no idea what the next step is. But I can't go there right now. Just pray really hard that it starts to work.

Good news for today...she is slowly being weened from the oxygen. She is down to 1/2 litre by nose and no blow-by. That is really good. At her worst she was on 4 litres nose and 15 litre blow-by. Believe me that is a lot of oxygen and it is a relief to be down to just the nose. Looks like we're moving in the right direction. At some point today she might have a chest x-ray. That will be her 4th since Friday. I think we've only had 4 since this all started. Crazy. Its good though cause they can do them in her room....we don't have to go to the basement where the big machines are. its not as scary but it is still scary. pray that she isn't too freaked out by it this time.

Thanks to Matt and Viv for dinner. (everyone loved it and you made enough for an army) thanks to Jamie, Kathy, Leslie and April for visiting. I love getting to see my girls...makes me feel pretty normal.

quick

We are getting Livi's port re-accessed because it stopped letting them get blood. the IV team has to come because no one on the floor knows how to use the needle they have been using. They had to special order the needle and the IV person isn't sure she knows how to use it. I'm a bit nervous. Pray that all goes well thanks.

Today has been a pretty good day by hospital standards. Alivia is slowly being weened from the oxygen and we are at less than half of the volume of early this morning. She has been pretty happy today, wanting to play so much and fighting sleep (sounds like my girl, huh?). She was so happy to see Gigi (as were Dad and I). We got a bit more sleep last night too. Her oxygen levels have been good enough that we haven't set off the alarms today...okay maybe once but thats nothing compared to the last few days.

All of the tests for pnemonia came back negative. But our doc said that the test can show a false negative. So for now we are continueing the meds. She most definetly has the flu and another possibility is that the Gleevec is causing problems with her lungs...Pray hard that this is not true...if it is they would have to stop the meds and for the first time since this started her levels are almost normal. Going in to transplant with levels that aren't normal is really really risky so we, of course want the best for her and that means continueing the Gleevec.

Please keep asking if they can bring me anything...well if you really want to bring something, make a snack or dessert with a note of thanks to the nurses. As always they are stellar and I am so thankful for them.

Better go...not sure how much time I have before she wakes up and i'm supposed to be getting a drink for my mom.

Little Mercies

We gave Livi the Gleevac and it came right back up. I actually think the reason that it did was there was a tiny peice of the pill that didn't get squished the whole way and it clogged the tube and I got nervous and pushed too hard and it all shot into her mouth and she gagged...and up came the Gleevac. I just started to cry. I knew it was my fault and I knew that ment NG tube. No trusting God here. Grrr...

Well we talked to our sweet nurse and she talked to the docs and they said we could try one more time. i borrowed a pill crusher from the nurses station (great little invention...way better than mine) and crushed away...said a prayer..and it worked!! she took it and kept it down. No NG tube here. Why dont' I have faith until things work out my way? I still have so much to learn.

Gleevac

We need a Gleevac miracle tonight. If she doesn't take the Gleevac tonight (and this for a girl who hasn't eaten in 2 days) then she will have to have the NG tube put in. No thanks. If she has to get the tube then she has to get platelets and all sorts of complications arise. how do I get the worlds pickiest (she pulls the lint of the carpet) kid to keep a tube in her nose indefinetly? Pray hard for this little miracle.

I'll update on our day later. She is fussy and needs me.

I'm tired

Last night was so so long. She was sleeping peacefully but kept dropping her oxygen level below 90% (not good...they want it above 92) so all the alarms would go off and nurses would come running from everywhere. We sure put our nurse Katie through the wringer last night. She did it all with a smile and kind words. i didn't realize how good we have it nurse wise until we spent time in the intermediate unit....believe me we have it REALLY good. I am so greatful for that blessing. She had another chest x-ray this morning and is still throwing up a bit. She just cant' figure out spitting yet so everything she coughs up she swallows and it makes her sick or gaggy and she ends up throwing up and since its been more than 24 hours since she's eaten anything she just throws up stomach acids and mucus..a pretty horrible combo if you ask me.

You would think after all that last night she would be a mess...but no. She is still sweet little Livi, coorporating with the nurses, directing Grandpa where and who to kiss (stuffed animals, me, her) and in general being a super sweetie. What a huge blessing.

Bill and Cynthia are goign to come spend the day. Dad is going to the Bookers to take a nap (only place quiet enough for him). I'm so glad they live nearby. I will nap whenever and where ever I can. I haven't cried much over the last few days...mainly just getting done what needs done. But this morning I really really miss my husband and my mom. I got teary eyed just thinking about it. Maybe its because we can't see each other that makes it extra hard. So James and Gigi...get better quick we miss you like crazy.

continue to pray for clear lungs, stable oxygen levels, slower breathing and healing for mom and james so they can come see us.

room 7261

We spent less than 24 hours in the intermediate unit...Thank God. I will be okay with never spending another second in there. It was just way to hard. It seems like no one was communicating and so we had someone in to check on her, do a breathing treatment, change meds, etc every 20 min...literally. Thankfully I ran into our doc's nurse and told her my concerns and she spoke to someone about coordinating the care so everything happened at once instead of all spread out. The worst was trying to keep the breathing mask on Alivia. It was way to big for her and pretty hard (even though it is the softest, smallest one they have) she was miserable but they didn't want to try any other ways. Finally my dad got a bit firm (thanks Dad!!) and we got the nose thingy back. Much better. We just had to do a little blow-by oxygen too. As the day progressed they were able to drop the amount of oxygen she was getting and now it is not so bad and we are back in the normal wing...in our own room. So glad to not have to share a room again. You don't realize how precious privacy is until you don't really have any. The best news of the day was that her heart is unchanged from the last time she had an echo. that means that this is not a heart related problem. Thank you Lord

please pray for the oxygen levels to stay above 92% all night, for some sleep (we still are running on less than 5 hours), that Livi's lungs will clear up more. pray for my mom and james who are still sick. They might not get to come tomorrow either. Pray that none of the rest of us get sick.

Also please continue to pray for my friend who had the baby last week. She is still having a really hard time and will remain in the hospital even though she had the baby last Thursday. All of the complication are shocking and really hard on the family. Thanks.

thanks to cynthia for all her help today (would be trying to survive on about 2 hours of sleep without her), to Kathy for dinner and the visit (so good to eat something not from the cafeteria, and to Erin for the visit and the sweet gifts. (Moose socks and M&M's make me very happy.)

Intermediate Unit

We got moved to the intermediate unit last night around 4 or something..My internal clock is on strike. The intermediate unit is one step down from the intensive care unit. It was a horrible night. She kept dropping her stats (not being able to keep her oxygen levels up where they need to be) and when she would alarms would go off and all the nurses on the west wing would come running. Finally they moved us and now she is hooked up to a ton of machines. There are wires attached to every kind of bell and whistle. Needless to say she is freaked out and won't go to sleep for any length of time. So on top of everything she is really tired. The oxygen mask they have for her is the smallest and softest but still way to big for her so it is pushing on her face and eyes and just looks really uncomfortable. Soon someone from cardiology will be coming to take a look at her heart to make sure that isn't involved too.

Please pray for clearing lungs, no heart involvement, sleep, slowed breathing. Also pray for her mouth...She keeps chewing on in the inside of her cheek ( I think its because she is so dried out and because she had a little place where she had already bit and it is bothering her) so her little lips are all covered with blood. It must be so irritating. Also please pray that my mom and James get better soon. We miss their help so much right now. They won't be able to come and see us and it is really hard. Thanks

Going to be a long night

We are still in our room (so far) she got some diaretics to clear some of the fluid from her lungs. It got rid of some fluid and hopefully that is the first step towards better breathing. Poor sweet girl. As long as she is slightly elevated her levels stay pretty good. As soon as she lays flat the monitors go off and all the nurses come running. Maybe later I'll just mess with it and see who is the fastest nurse (just kidding...its late and I'm giddy from the stress and adreneline). If she continues like this we'll stay in our room. Just made up a bed for dad and will make up my own also...need to do something productive instead of stand and stare at the monitor (not that helpful just makes me crazy...)

Please pray for my girlie that she sleeps peaceful, doesn't get too hungry (no food or drink allowed right now) and that her lungs start to clear up. Also please pray for the three year old boy named Sean who is a few rooms down from us. He is not doing well at all and they are not sure if he is going to live or not. Pray for his parents and 3 siblings also. Thanks.

Gosh

See I complain about a long, slow day and things get intense really fast. This AM was relaxed but things have gotten crazy as the day progressed. Her coughing increased and her breathing got much to fast. She is on a lot more oxygen than earlier today and is breathing about 2X's as fast as she should be. So we've had a ton of people in and out of the room looking at her. At one point there were 3 residents, 3 nurses, James, My dad and I all looking at her and trust me the room is not very big. We had an x-ray in our room and the added some more antibiotics. They sent blood to figure out what her actual oxygen stats were and she is on constant monitoring. The intermediate unit has been notified and will come check her out. If the breathing gets any more labored or any faster we will be intubated and moved. I hear her crying better go.

Creeping by

Today seems to be creeping by. It took about 10 hours to get to noon...from 8 am and now its only 4:50...long days. usually in hospitals I lose track of time and everything speeds up, but today thta is not the case. I thought since it was Sunday we would be seeing some friends. But I think the flu scared everyone away. I understand. Kathy did stop by and we got her into a mask right away. Its nice to see a friendly face...even if it is just the eyes! (thanks kathy)

Livi's breathing has been harder today. she is laboring a lot to keep her oxygen levels up. She is is still 98-100% but she is breathing about 60-65 times a minute. That is not good. They are going to have the respitory theripist come and give her a breathing treatment and then we'll see what happens. They also upped her oxygen through her nose. She doesn't like having the breathing tube on but it helps her. So far today she hasn't pulled out her port access and being confined to the room hasn't made her bonkers...mainly because she's tired and not feeling great. She did have a great morning playing with Gigi and Grandpa on the floor. We got out all her toys and played. Then we painted. She was laughing and having a good time. She may have just overexerted herself this AM and that is why the breathing is harder now.

Please pray her lungs stay clear (the fluid is gone! just not as open as it should be) pray that everything opens up and she doesn't have to work so hard to breath. Pray that this is just run of the mill pnemonia and she will get better really soon. Pray that we can go home. Pray for my mom..she has a cold and so she can't stay with us right now. She might get someone sick and I think its hard for her. she is going to go back to our house. Pray no one else gets sick or they'll have to go home too. Thanks.

what day is it?

I realized it was Sunday when I went to buy a maganize and the gift shop wasn't open yet....oh and because the hospital is almost empty. Tomorrow the hustle and bustle will begin again. We made it through the day of isolation yesterday rather well. She didn't freak out to much. Today is going to be a huge test. But we are able to get toys out of the toy room so hopefully she won't be too bored.
Yesterdays afternoon drama came from the never ending port access/ sweaty baby war. Alivia gets sweaty pretty easily. Her port is accessed and has been acess since Friday. When they access the put in the needle (little more than just a regular needle...it has a tube that hangs from it..maybe I'll take a picture cause its too hard to describe) and then cover the whole thing with plastic. It sticks to her skin and then she sweats and it pulls off and her skin just get more and more irrated. so she is constantly itching it....as you can guess this is not good. There isn't much we can do to keep her from itching and we can't put any creams on cause it just makes it less sticky...horrible cycle. So they have been trying everything to keep it on and to keep it from getting itchy...so far no luck. Yesterday she was itching and I kept paging the nurse to come change the dressing thinking maybe a dry one wouldn't be so irritating....I told the nurse 4 times and finally after about an hour she came in. By this time Livi was grabbing it and pulling. Well she somehow pulled it out just enough so it was still in her skin but not in the port so fluid was building up around her port. Thankfully the nurse shut off the IV quickly so only a bit of fluid got in. Everything was removed and her poor port was even bigger than normal and really really itchy. They had to reaccess it to put medicine into it to lock the port and it had to be done quickly so that the port would still work....which ment no numbing cream. Horrible. I felt so bad for her. Later that evening she was so swaeaty again that it came out on its own. She got to have 3 hours without it accessed. She has a square large square of red inflammed skin all around the port. Needless to say changing the dressing this morning was stressful, painful and scary for her. they are trying this new stuff that is suppossed to make the tape stick better...but it stings when they put it on.
Please pray that her skin isn't so irrated, that the access doesn't come out again, that she can forget its even there for a while.

The coolest thing yesterday was the Motorcycles. The Harley owners association (or something like that) of York comes each year with Santa and Mrs. Claus (on Harleys) to drop off toys. Livie was sleeping and missed it but my dad and I were on the 5th floor watching football when we saw all these bikes entering the parking lot. There had to be 200 motorcycles. It was fun to watch and Livi got a cool Elmo doll that does the chicken dance (guess what we spent quite a lot of time doing yesterday?!). This motorcylce group does this every year. What a great idea. All the kids that can come down to the lobby and see Santa and the bikes and get a toy.

We all got some good sleep last night. Livi did a great job of staying alseep or gettng back to sleep if she did wake up. What a good girl. I love my little ladybug so much. She always amazes me. When they come to check her vital signs (every few hours) instead of getting scared and freaking out she holds out her little finger for the pulse oxygen reader then picks up her leg for the blood pressure cuff and then points to her chest so they will listen to her heart and lungs. What a smarty, what a joy.

thanks to the Millens for dinner last night it was so good to have all that food for everyone and even Alivia liked the rolls...she ate a whole one...so good since she's only wanted yogurt since we got here. Thanks to Bill, Cynthia, John, Will, Matt, Viv, Nicholas and Hannah for visiting last night. It was good to have some distractions and made the evening go so much faster.

Please pray for James. He is still having to work and not getting to be here as much as he would like. (In fact he's working right now). Pray that he is able to concentrate when he's not here and able to have a good time with Livi when he is here.

Gotta go...think the doc might be in soon.

Influenza

Livi has the flu. I know you're saying...wait I thought she had pnemonia. Well they haven't ruled that out. She may have that also. But she most definetly has the flu. So we are on contact isolation..meaning we are stuck in our room from here till we get discharged (little taste of the future I guess) its not to protect Alivia but to protect the other kids on the floor from the flu.

If you are or were planning of visiting it is still fine just know that you will be exposed to the flu. It isn't a strange form or anything. Just the flu. But you have to be aware you are most definetly going to be exposed if you come visit us. Thanks. Livi wont' be able to leave the room either so if a bunch of people show up know that you'll probably be sitting somewhere else and not seeing Alivia at all. Thanks.

Back in 51 West

We are recovering from the broncostomy. It went pretty well...
They didn't do as much as they usually do because each time they went into her lungs her oxygen levels started to drop so they felt she was too fragile (doc's words) to really look around her lungs. But they got the sample they needed. They will culture it and see what grows. In 2 or 3 days we will know the results (fungus, bacteria, virus...What kind of pneumonia...Etc). She was such a trooper. I am amazed by her ability to bounce back. She is watching a Sesame Street Sing-a-long video (her new favorites!) with my parents and being cute little Livi.

Please pray that the she is able to fully recover from the intubation and procedure. during the procedure they squirt a little salt water into the lungs so it will mix with whatever is growing in there and then suck some of it back out. The rest is just absorbed into the blood stream. With kids this makes them cough a lot more and she's already thrown up once. this is normal as she is swallowing everything she coughs up right now. Pray she doesn't throw up a bunch more and is able to clear the fluid and stop coughing so much (usually takes 24 hours). pray for a good nap (we only got about 3 hours last night). Pray that the pneumonia is a pneumonia and not a side affect of the leukemia. Pray it is something treatable and easy to get over...and normal.

Thanks to both of my parents for staying in the overcrowded, cough-filled Ronald McDonald room so that you could help me. The 2 am walk that lasted 2 hours was fun with my dad along. Love you both more than I can say.

Early Morning

Tomorrow morning between 7:30 and 8 they will start the broncostomy...Or whatever its called. They will be intubating her because of the size of her belly. It just makes it too hard to regular her breathing while she is under anesthesia. So they will put in the intubations tube and then snake a small tube with a camera on the end down into her lungs. Once there they will squirt in a bit of salt water and then suck it back into the tube. Only about 35% gets sucked back up the rest is supposed to be absorbed by the lungs and dissolved into the blood stream. The fear with her is that it will instead irritate the lungs more and thus make her breathing worse. If that is the case then she will stay intubated (and in the ICU) for a few days until she is breathing better.

Pray that the procedure goes smoothly, that her lungs don't get irritated, and that there is not bleeding of the esophogus on the way down. If there is they will stop the procedure and thus not know exactly what kind of pneumonia she has and not be able to treat it properly.

On a good note...our doc stopped in and said he was suprised (after looking at her x-ray) how good she was doing and how little oxygen she needed. Always nice to give the doc a pleasent suprise.

Thanks to Kathy for the great dinner that feed everyone and for hanging out all night. Thanks to Corey for stopping by and for the reassuring words...good to hear from a doctor. To my parents for hoping in the car the second they heard what was going on. To Bill and Cynthia for being here and to Grace and Pete for their visit.

Room 51 West

Unfortunelty we are back in the hospital. Total suprise. We came in for our normal counts and realized Alivia had a fever. She didn't have one last night or even this morning but sometime on the ride here she developed one. So then they realized her heart rate was fast. So they sent us for a chest x-ray. Turns out she has pneumonia. Poor little lady. It came on really fast and is called silent lung because you wouldn't know by listening that she has it. It is diffused throught the lungs instead of all being in one place. So we already had round one of IV antibiotics. And she is getting red blood cells. We will be in the hospital for 5-7 days...although there is a slight outside chance it might go great and we could get out in 3. Tomorrow we will have a bronchioscope (no idea how to spell it) under anesthesia. They will put a scope down her throat into her lungs get stuff to culture. Not lung tissue...I don't really understand it. We will have a consult with the anesthesiologist and the pulminary doc tonight. They might have to intubate. Not looking forward to any of this. Also there is a chance they will just leave her intubated for a while. that means ICU. No thanks. By the way I couldn't have gotten through today with Cynthia and the nurses in the clinic. Thanks to Joanne, Cindy, Carol, Lois and Janiece. As always you blow me away with your kindness. Love you ladies.

Please pray for a quick and easy recovery. Pray that she will eat okay, that there will be no more fevers and that she will keep her oxygen levels up on her own.
Please also pray for my friend who had a baby yesterday. There were complications with her (the baby is fine) and her recovery is going to be really long and hard. Pray for her and for her family. thanks.

Halloween Pictures 2

Uncle John and Livi racking in the candy. We were one of the few groups that went trick or treating in James' parents neighborhood so everyone unloaded candy on us. We had way way to much.
Uncle John and Livi. She figured out the concept of trick or treating pretty quickly. As soon as someone would put the bowl of candy near her to pick one she would start grabbing as many as she could. We had to work hard to get her to pick one.
Jeremy the Goat
Uncle Will the Scarecrow
We had such a great time. Definetly going to be a tradition in this house.

Halloween Pictures 1

We went trick or treating Tuesday night...it wasnt' just Alivia's first time. None of us had ever been when we were younger. So it was all of our first time. We went with a barnyard theme.

Farmer and Chicken
Pitchfork John
Kitty Erin
Farmer Emily, Chicken Livi and James the Egg