Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Sunday, April 29, 2007

Day +50

Well, its Livi's dad again. It's been a couple weeks since I last wrote on here. I thought I would share some more with everybody out there.

I work in the remodeling business so I am going to tell a little story about wood. This is the easiest way for me to explain what I am trying to say. Plywood is a type of wood that is made from a lot of little peices of wood. It is usually constructed from leftover scrap wood. The peices that are too small and too weak to use some where else. These peices by themselves have nothing to offer. But, if you take these peices and put them together and add glue and pressure you get plywood. Plywood is a many layered sheet of wood that has stength and durability. It is not the individual peices of wood or the glue or the pressure that give it its strength. It is the combination of all these parts. I feel this is exactly the same for us. We are able to be strong because we have a network of friends and family that are supporting us through this whole ordeal. We are sandwiched in by our frinds. The glue that holds us together is Gods grace. The pressure of life only makes us stronger. We are part of something bigger than ourselves and we will not be broken. Come what may we will stand throught it. Because of Gods grace and the friends that stand with us. I want this post to be a "thank you" to all those around us. You are going through this with us whether you know it or not. Our biological family. Our extended family of friends. Our church family. Thank you for strengthening us. thank you for being here for us. Your support, no matter how small is part of the bigger picture. You may not know it but you are helping us. Just like every little piece of wood that makes up a big peice of plywood is important, so are you. I want to thank every body who has helped us along this road. And thank you for continuing to help us. Thank you for what you are doing for my wife, my daughter and my self.

Tomorrow will be day +51. This means that its been 61 days that My wife and daughter have been in the hospital. Its definatly staring to wear on us. Emily is very tired. I am very tired. Even little Alivia seems to be getting tired of this whole experience. She has started to say home more and more often (even calling it out in her sleep) It would be really great to be able to just come home with a healthy little girl.

Friday, April 27, 2007

Day +48

I was checking my phone messages today and I stumbled across this photo. It is from the car ride to the hospital 58 days ago. She was in an amazing mood that morning. She was laughing and screaming with Pa in the backseat. She had no idea what was ahead for her. she was just happy to be with her some of her favorite people. She is the toughest kid I know. I haven't seen the silly girl as often lately. But she's still in there. We get glimmers and I get so excited about the future when she will be a carefree little girl, when hospitals are a distant memory. I think she will always remember bits and peices. She's that kind of a kid. But I pray she only remembers the good things...like the sweet nurses, her Pa, Gigi and Nan being here all the time, special days with Daddy, new toys and new little friends. I hope that somehow those are the things I remember too. I don't want to live with this always in my side mirror. I don't want to live always looking over my shoulder or waiting for the other shoe to drop.

Things are stil the same. Her liver functions continue to creep towards normal. Unfortunelty she is still "stooling" around 6 times a day. If this doesn't stop soon they will be doing an experimental treatment on her next week. It is a cell infusion that will hopefully help with the GVHD. They say that there don't seem to be many side affects in the short term. They aren't sure if there could be any long term affects since it is such a new treatment. I would rather not be part of an experimental treatments. Please pray the steriods, cyclosporin, and cellcept (Spelling?) start to work so she doesn't have to have the experimental treatment.

Thursday, April 26, 2007

Day +46

Livi is allowed to wander less crowded parts of the hospital as long as she has a mask on. We avoid crowds and take elevators that no one is on. Here she is on one of her outings.

Today's med infusion went well. Our doc said that since she didn't react the first few times they would assume that she wont' react. What a blessing. Her nap was no where near as long as yesterdays.

She had a pretty rough night last night. I am hoping we don't repeat it tonight. She was up for over 2 hours crying and I wasn't able to console her no matter what I did. Finally we got some meds for gas and that seemed to finally help her to settle back to sleep. She has been eating GoGurts like crazy (8 today) and tends to gulp them down so her belly doesn't feel great after. Also she is getting 2 teeth. Yikes. So she had some really unhappy times today. Pray the teeth come in quickly and that she will be hungry for something besides GoGurts.

Her Liver functions were down again today. So after a few more days they will start to taper the levels of steriods. I am glad. I want her off of steriods as soon as possible. Pray that the GVHD is gone and that it doesn't return!! (it is possible to get it even 100 days after transplant.)

My parents are coming back tomorrow and we will be glad to see them agian. If you haven't gotten a chance to see them they will be leaving by 3 tomorrow so don't miss your chance.

Thanks to Cynthia and Bill for coming to visit and help today. It would have been a long day without any company (not sure how single parents or parents without support do this!!)
Thanks to Margaret O'Dell for your sweet letter and the coupons.

Tuesday, April 24, 2007

Day +45 part 2

The meds went well. She didn't have any reactions...except she's STILL napping. Yikes. that might mean she's up all night tonight but I can handle that side affect. They said that just because it went well today doesn't ensure that it will go well tomorrow so please continue to pray as she will have this med until her liver functions are normal and they can start the oral anti-fungal med back up.

My parents got home safely. Have a great time at home Mom and Dad...see you Thursday. Love you

Day+ 45

Alivia will be starting a new anti-fungal med in the next 15 min. It is IV and runs over 2 hours and has some intense possible side affects (95% of people get them). The pre-meds are tylenol, benadryl and demoral! She may have fever, shaking, and chills to name a few. Please pray she is in the 5% that doesn't get side affects.

Her liver function numbers came down today. (For the nurses out there...her ALT is 592 down from 706 and her AST is 110 down from 220.) That is encouraging news. They are not near normal yet but at least they have stopped rising.

My Dad AND Mom just left for Indiana. Pray for a safe trip for them. If you love Gigi and have been missing her this is your big chance to see her. They will be in Indiana from this evening till about 3 on Thursday. Also if you have anything to add to the nurses gift please get it to them.

Thanks to Marmie for the card, Leslie for the letter, Sparti Hemingway for the note and to whoever sent us the worship CD...we look forward to listneing to it. Mail is still one of the highlights of my day.

I'll post to say how the meds went later.

Monday, April 23, 2007

Day +44

Alivia's liver function numbers continue to rise even though they have stopped all meds and IV nutrition that might make them rise. So starting today they are upping her dose of steriods to a little more than double what she was getting and also adding a med called Remicade (which she is getting now). If neither of these things work they will try an experiemental treatment that is a T-cell infusions.

She is a bit crabby lately (I'm sure I would be super crabby if it was me so a bit is no big deal). She just seems unhappy more often. She was up every 45 min to an hour last night just calling out my name and wanting me to stand by her bed and rub her back. She would quickly fall back to sleep but as soon as I walked away she would call out for me again. It was a long night. She also needed a new diaper 4 times. Dad came at 8 this morning and around 9 she was awake enough to let him hold her so I got back to bed for about an hour. Mom has been sick since yesterday so she has had to stay away...we miss Gigi. Cynthia returned from her week in Colorado today and its nice to have her back. My dad will be heading to Indiana again this week to get some work done.

Our house is coming along slowly. We are hoping to get it done before we get discharged so we can go straight home instead of to the Condo. I would be overjoyed to go to our house and not the condo. I will go there if need be but to be at home would be ....I can't put into words how that would feel. oh well.

thanks to the Garners for the sweet card and pics of Jude (he's getting so big!), to the Rice's for Mr. Potato head and the glamour clothes, to the Spinetti's for the Polly Pocket and the visit (I loved meeting your sweet girl) and to Jill Piper for the generous gift.

Also thanks to Andy and Sonya for a great Friday night. James and I are both so thankful for friends like you guys. We know we will always have the best time with you and look forward to the next time. Have fun on your trip!!! Take pictures so we can pretend that we went too.

Saturday, April 21, 2007

Day +42

Just a quick update. Alivia is official not Neutropenic (who knows if that is spelled right) anymore. It means that she has an ANC count of over 5000 and thus is less likely to get an infection. Avoiding infections is huge!

Her liver functions have been elevated and they have had to stop 2 meds and the lipids (fat) of her IV nutrition. Then once the numbers come down they will add the most important of the meds back in and hope that it is not the culprit for the high liver functions. Hopefully they will be able to figure this out soon.

Her WBC's and platelets seem to be engrafted (for the last few days her platelet numbers have risen slowly instead of drop) Her RBC's are slowly decreasing but seem to be holding on longer than usual. She hasn't had a transfusion since the 11th.

She is still having major stooling issues. Hopefully the increased steriods will combat the GVHD and thus clear up those issues. GVHD can become pretty major. You can die from it if it reaches stage 4. Not sure what stage Livi is but it is lower. Pray that they are able to get in under control because it can get out of hand rather quickly.

She had an overall good day today. She walked all over the place (where she's allowed to go) she hasn't had this much energy in a long time. She usually walks for a bit then wants to be carried. Today she walked up and down a very long hallway twice. It was good to see.

Over the next few weeks you will hear from James, my dad and maybe others. My dad will be going home again this week. So if you have anything to add to the nurses gift now is your big chance. Please consider doing this as they have truly made our lives so much easier.

Friday, April 20, 2007

Day +40

Pictures of the latest paintings and who they are for.

Easter Chicks on her mirror

Easter Basket and flowers on her bedroom window

The Aquarium (by Sonya and I) at the end of the hall)

Her Princess door


Thursday, April 19, 2007

Day +39

The results from Seattle are in and Alivia does have GVHD (graft versus host disease). They have already started treatment (large doses of steriods) and we are hopeful that it will clear up quickly. The stomach has GVHD already and the colon was swollen which is the sign that it will be starting soon. Now we know why she is stooling so much and why she doesn't want to eat. Not eating was her bodies way of protecting itself. Even when she was hungry her stomach told her not to eat. Pray that it is easily controlled, that it doesn't affect her esophogus, lungs, or skin. And pray that it is the acute form...not the chronic.

Thanks to
Joanne Mimi Yen Ayers for the card and stickers
Kathy Booker for the card, stickers and article
Marmie for both of the cards
The Teeter family for the cute photos, card and stickers
MaryAnn Kisic for the card for the nurses

Tuesday, April 17, 2007

Day +38

Hello everybody, I had a crazy idea about a week ago to write a few blog entries for Emily....give her a little bit of a break. And at the same time give everybody reading this a different perspective than you have been getting. Let me introduce myself: I am James, Emily's husband and Livi's Dad (or Da! as she likes to call me)

This past year have been a very hard year. This is a bit of an understatment. I still remember April 8th,2006. When this whole crazy trip started. It was very scary at the begining. And it is still very scary now.I remember thinking "how can we make it through this?" The task ahead of us seemed so unbearable. I remember the first week we were in the hospital. We were in the room at the end of the hall from were we are now. At the time there was a family in the room that we are in now. A young couple like us with a daughter Livi's age. She was in the middle of a bone marrow transplant. I remember the tired look on the fathers face everynight when he would come from work to spend time with his wife and daughter. I remember looking down the hall and praying to God to spare us from that! I felt that that would be too much to have to go through. It would be more than we could bear. It seemed like a hopeless situation. Now I look up the hall at family's in the room we were in a year ago. The tables have turned. I am the tired father coming to visit my wife and daughter. We are the family going through the unbearable situation. But, somehow how it seems different from what I imagined. It's hard like I imagined, it is so tiring like i imaginged. It is so draining, so scary, so sad. But its not hopless. Somehow we are getting through it. Its not unberable. What is this? What is it that is sustaining us? Why does this seem easier than I thought even though it is harder than I imagined? I have realized that this is the grace of God. He is giving us the grace to get through the tough situations that we are in right now. The reason that it seemed so hopeless a year ago was because I had forgotten that God gives us grace to get through each situation that we are in at that moment. A year ago God was giving us grace to get through what we faced then. And now He is getting us through this. He is with us today. He is sustaining us in this moment. I don't have to worry about tomorrow or later tonight or what might come next year. God will give me grace for that situation.Then. Not now. This idea is very encouraging to me. It reminds me that God is good and that even when I can'tunderstand things or when i don't believe, He is still with me. He is still sustaining me. Even when my unbelief is bigger than my faith. God is still faithfull. This gives me hope.

I am looking forward to the day that Livi and Emily can come home. Until then I am going to continue to trust God. And, hopfully, I can learn some things through all this. Maybe grow a little as a husband and a father. Thank you to all who read this and all who are praying. I will write more later. -jh

ps. the camera is having some battery related issues and will be fixed soon so then pictures will be posted again

Sunday, April 15, 2007

Day +36

All weekend we have been excitedly preparing to be discharged on Monday. We are able to get into Home of their Own (the condo here in Hershey) and Mom has been furiously cleaning every inch (thanks Bleach Queen). Then this morning we talked to our doc and he said that we wont' be going home tomorrow after all. Alivia "stooled" 8 times yesterday and a few of them were big. So we will be here contiueing to observe her. We are currently on all oral meds but we may be switching some back to IV. Also they will be sending all of her biopsies from the endoscope to a special lab in Seattle that does all transplants and has much more specialized equipment. They will test to see if their were any small indications of GVHD that the labs missed here. So we are not out of the woods. And if the stooling continues then we may have another endoscope later this week. We want to catch it early if it is GVHD. Please pray that the stooling (which is what I will be calling it cause poop just isn't a serious enough word anymore) slows down and that she truely doesn't have GVHD. Pray that she starts to eat more (still only a few chips, pretzels, crackers or peices of cereal a day). Pray that she isn't sick to her stomach anymore. Pray we get to go home sometime this week.

Friday, April 13, 2007

Day +34

Livi's tests for GVHD all came back negative.
Her stool tests also came back negative for any viruses, bacterial infections or parasites.

We have to switch one very important med to oral (and get the levels perfect) and then we will be discharged early next week to the apartment here in Hershey. Pray that she can keep the medicine (which smells like skunk and has to be oral not through the NG tube) down and that the levels are easy to regulate.

Wednesday, April 11, 2007

Day +32

Livi seems to have come through today well. She had to be intubated. But she came out of anesthesia well enough. It was a little uncomfortable because she had to wear her mask while coming out of anesthesia because they had no sterile room for her to recover in. Its amazing how little ability they had to protect her from germs while in recovery. They are most definelty not prepared for immune suppressed people in surgery recovery. Her nap was short so we are hopeing she will hit the hay early. I didn't sleep so well last night and could use some sleep. In general not a horrible day. Any day when your kid has to be under anesthesia is not a great day but it turned out well.

Night terrors are definetly one of the possibilites for why she isn't sleeping well. My brother had them when I was growing up so I definetly have some experience with it. And he didn't have any traumatic hospital stays to draw from. Also steriods can increase them. We are still going to try to rule every other possibility out to be sure we aren't missing anything.

Her WBC's are slowing rising on their own. This is the hope and we are glad to see them coming up on their own. Two days ago they were 1.7 and today they were 4.4. Hopefully they will continue to rise and be the right kind of WBC's.

James is working on getting our home ready for Alivia to come home. Thanks to everyone who has volunteered it is such an amazing help and I can't even express how much it means. Thanks to Bill Haughery (for organizing and working so hard), Matt Haughery, John Haughery, Chris Haughery, William Haughery, Steven Smith, Lyndon Sentz, Anya Stoltzfus, Ken Stoltzfus, Dwayne Lapp, Darcy Smith, Jason Taylor, Andy Long, Josh Landis, Jared Randolph, Bron Irwin, Mike Keener, Clyde Erb, Lane Randolph, Dave Howell, Sonya Long, Tom Eckman, The Minich Family, Cynthia Haughery, Gretchen "Gigi" Allen, Darrell Landis and Scott Stoltzfus

Here are a bunch of pictures since I haven't posted any in a while.

Pa and Livi playing their oatmeal box drums.

Outside her door for the first time.

Daddy, Livi and the Easter loot

Gigi, Livi and the Easter bunny (she was so excited)

Thanks to...
the Wilson's for the card
Kelly Tonkin for the cute chair
LouAnn and Barry Miller for the ladybug cup, bank and push toy
Buzz and Hazel Blanchard for the card
The Yoder's for the card and pictures
Jeremy, April, Lane and Ava Stoltzfus for the cards, stickers and picture.

Day +31

I'm way to tired to type anything coherent but I wanted to let everyone know that Alivia's endoscopy is scheduled for 9 am...or so we think. She will be under anesthesia for about an hour and I am nervous as she doesnt' always do well with anesthesia.Please pray her lungs won't fill with fluid, that she won't be fluid overloaded, that she will tolerate the procedure well and that there will be no bleeding from the biopsy sites. Also pray all tests come back negative. Thanks

Tuesday, April 10, 2007

Day +31

Alivia had a rough night last night. I'm not sure if it is nightmares, nausea or pain but she wakes up crying and gets more and more upset. She doesn't want to be held and gets really upset if I pick her up. She doesn't want to be touched and if I do she tries to hit me. It is so sad and I wish I knew what was wrong so I could help her. Please pray that it stops happening so she can get a good night sleep.

We are definelty having the endoscopy on Wednesday. We talked to the Doc that is on services this week and he said he also thought it would be a good idea. They are sending samples of her poo to be tested for all different kinds of infection and with the endoscopy we can nail down why she is still having the problems. Continue to pray for these problems.

This evening was a somber evening on the 7th floor west. A patient that has been here the entire time we were here passed away. She was in her teens and had AML. Please pray for her family tonight. She was there only child and I can't imagine how they feel right now.

My dad went home today and will be home till Wednesday. So if you needed to get something to him, had cards for the nurses, or just wanted to see his smiling face now is your big chance. We miss him dearly but are glad he is able to get some work done so that he can come back to us. Miss you and love you Pa.

Thanks to Marmie and Aunt Kathy for the cards.

Monday, April 09, 2007

Day +30

Happy Easter everyone. Alivia had a great Easter. She saw the Easter bunny through the window yesterday and today saw him up close and in person in the hall. That's right Alivia has ventured into the hall. We have been officially "allowed" to go into the hall for a while now but she hasn't wanted to wear her mask (which had will have to wear outside for quite a while) but we were finally able to get it on her the other day. She cried until we opened the door and stepped into the hall and it was like a whole new world opened up. That was the first time she was really happy in a while. Since she seems to be having a bit more happy times. She is still out of sorts frequently but at least now we get to see her smile too. She got an Easter basket when she woke up and we did an egg hunt. When she spotted the first egg she squealed with delight and ran to it. Way to cute. She would hold each egg up to her ear and shake it to see if there was anything inside.

That's all the good news. Now for the less pleasent news. She is still "stooling" more than she should and it is still not a good consistancy (trying to be discreet). So they scheduled an endoscopy for Wednesday. She will go under sedation and they will put a scope into her colon and take biopsies and then into her stomach. Neither sound like fun to me. There is a high risk of bleeding due to low/poor functioning platelets. They want to do this to rule out GVHD. Originally it was going to be tomorrow but the doctor who ordered it was the doc who pushed for the NG tube so we decided to wait till Wednesday so we could get the opinion of the doc who comes on rotation tomorrow. He will probably agree but we want to make sure that everyone thinks this is a good idea before we proceed. Please pray that she doesn't have to have this test. pray that she doesn't have GVHD. Pray that she is able to feel better more and more often.

Friday, April 06, 2007

Day +28

Livi woke up and used her arm as if last night never happened. Thank God. We are assuming it was a muscle spasm from holding her neck the wrong way. Her day was pretty good. She is definetly ready to be out of this room. We are getting closer to that day. She hasn't had a RBc transfusion since the 28th which is really good. She will probably need one tomorrow but that is going to be the way things are for a while. Some people get RBC's every 3 days for months after transplant. She is also going about 3 or 4 days between platelet transfusion. That is good also and one of the markers they look for for discharge. She ate a bit today and we got her some lactose free ice cream (thanks Mom) and we used some instant pudding mix with lactose free milk to make pudding. She wasn't thrilled about the pudding but ate about 1/3 cup of ice cream. Also she ate about 15 pretzels, a bite of banana, about 5 fruit loops and 7 oz of water. Suprisingly that is pretty good. She is still on IV nutrition at night.

Thanks to
Sue Brown for helping with the nurse gift
Jill Piper and Paula Daskavich for visiting my dad
The Garners for the card and chocolate
Great Granddad and Great Grandmom McClements for the sweet note
The Mikes and the Petes for the cute bathrobe for Livi, San Francisco/Elmo shirt, leggins, chocolate (that is almost gone already) and lady bug purse. Hope you are all having so much fun together. Wish we were there too.
The Stutzmans for the musical card.

Day +27

Today was another day. Livi woke up in a really sad mood and took about an hour to want to play or let Pa hold her. Usually she likes that he is here and doesnt' even notice if I sleep a little more but not today. We are still chugging along trying to get more meds oral and get her to eat some. Right before her nap was tough because she opened the fridge and saw pudding and wanted it. Of course dairy is the only thing she can't have and she was distraught. It is so hard to deny her food when she finally shows an interest. There was some small frustrations over some silly rules that we didn't understand (having to do with activities and toys that are donated..hard to explain and not really worth talking about).

Tonight James got to spend the evening with us and I was so excited. We had to give Alivia a bath and after for some reason she just wasn't happy again. My mom held her for 45 min while James and I spent some time alone then we came back to give her some oral meds. Then my Dad held her for a while and then me. While I was holding her she was eating some pretzels and wanting to drink and I realized she wasn't using her left arm (which is her dominate arm). It was strange and I started to try to get her to do things with it and she got really upset and was crying really hard. The nurse came and looked and then a doc. There is no noticable swelling (which could mean a blood clot or that the broviac has a tear under the skin and is leaking fluid and blood) but she won't use it and would cry uncontrollable if you tried to move it. Very sad. She didn't fall asleep till 12:30 and ever since has been crying out in her sleep ever 20 min or so. She just cries "no" over and over. So she is back on Morphine every two hours and if she is still seeming to be in pain in the morning she will have to have an x-ray to rule out all the serious possibilities. We are hoping that it is just a pulled muscle from the way she has been holding her head due to the NG tube. This NG tube has cause nothing but problems so far. It will be a week tomorrow from when we put it in and it has not been a good week.

Please pray that pain will subside while she is sleeping and she will awake with full use of her arm. Pray that there is no need for an x-ray. Pray that she gets some peaceful sleep at some point. It is excruciating as a mother to listen to her crying "no" over and over and know that there is nothing I can do to make her dreams better.

Wednesday, April 04, 2007

Day +26

Livi finally seems to be adjusting a bit to the NG tube. They stopped the NG feeds because of all the poop problems. It has been much better since. WE are going to slowly start to give her meds orally, no where near as fast as last time. ANd then we can use the NG tube as a crutch. Then in a bit if she is taking all the meds they will star to try the really important meds orally. For now they will continue to be IV. That way we are sure she is getting them and we don't get used to using the tube for the most important ones. (cyclosporin and steriods). We will probably be discharged around the 15th and go to the home here in Hershey until our house is ready sometime after the 21st. If you volunteered to help and havent' been called or know how to do construction and want to help please contact us. (call Bill, James or post a comment and we'll let you know what is needed)

Here are some pictures.
Alivia decided to decorate my face with stickers.

She got bunny ears as a present and and everyone has had a chance to wear them...but she looks the cutest by far.

We let Alivia play with the toilet paper since no one is allowed to use the bathroom. She was making nests for all her stuffed animals.

Karen Lin made Livi a hat to match her Zoe slippers. She loves it and has to wear it with her slippers.

Here are the dancing grannnies entertaining Livi.

I have a ton of thank you's since I haven't done them in a bit.

Thanks to Marmie and Lisa for making my weekend perfect. I've missed you ever since.
Thanks to Sonya, Bekah and Hollis for making me laugh harder than I have in a while. You girls are the best and I am blessed to have such good friends
Thanks to....
Melissa Nibert for the books, stickers, hat and cutie outfit. Can't wait till she can wear it.
King Jude
Laura Bol
Pa..for the movies that Livi is enjoying so much
The Williams famiy for the finger puppets...she loves them and talks to Elmo all the time
Jenn VanBuskirk, Jeff Eaton, Callen, Mishelle and Peter VanBuskirk for the bubbles, headbands, windmill, stickers and bunny ears.
Grace United Methodist Church
Mary Ann Kisic for the card and stickers
Eisenhower Elem All Star Basketball Tournament
Joe and Karen Lin for the stickers and cutie patootie hats
Lynn and Denny Templeton for the craft, stickers (we used half of them already), Eggs, Bunny ears and super generous gift cards
The Rosenbergers for the movies, my all time favorite candy, the easter egg craft, the magic grow sponges, and the generous gift.

thank you for helping me with the nurses gift...
The Kruest family
Amy Fideli
Claudia Curry
The Tourist Inn

Monday, April 02, 2007

Day +24

The last few days have been filled with frustration for me. As you know Alivia got the NG tube on Friday and up until this evening I had not heard her laugh. If you know Livi you know she is a happy, smiley girl and so days without her laugh is torture. This tube has affected her so much. They keep telling us she will adjust but I dont' see it.

The most frustration stems from the seeming miscommunication between doctors. Up till now things have been so smooth and great but this NG tube experience and the discussions of discharge have frazzled us all. On Thursday I talked to Dr. A (we'll just call them Dr. A and B for reference) and discussed the possible NG for Friday or Monday. Then Friday at 7:15 I was awoke by Dr. A telling me we would do the tube that day. I was shocked as we had decided after much discussion to wait till Monday. I talked to my dad, James, mom, the doctor again and the nurses and after pressure decided to go ahead with it. The next day we talked to Dr. A again and said how bad it was and he said "if she'll eat and take her meds orally we'll take it out". I was under the impression that it had to be done. Well today Dr. B came in and said we had to do some meds orally and that we wanted to remove the tube as soon as we can. My question is why did we do it in the first place? Part of the reason was her eating wasn't enough to get off IV nutrition and the other so she wouldn't have to take oral meds. Now because of the tube she won't eat at all, she almost constantly pooping (10 times today) and she still has to take some meds orally.

The other concern is discharge. They would like to discharge us later this week which would be amazing if we had somewhere to go. But our house is still in a major state of disrepair because of all the improvements we are doing to make it safer for Alivia (ie..as germ free as possible and with the best air quality for her) There is a place that they usually send patients too but it is not currently available because it is being renovated. So we are stuck in a holding pattern. Can't go home, can't stay here. Never thought I would actually want to stay here longer than needed but I don't feel safe taking her just anywhere.

We definetly need a huge dose of prayer.
1. That she would start to eat
2. That the pooping would stop being so frequent
3. Her bottom would continue to heal (it looks pretty good but all the pooping could make it bad again)
4. The NG tube issues would be figured out (ie. keep it, take it out, feeds, meds, etc)
5. That they would find a place for us to go.
6. That they wouldn't discharge us on Friday. Weekends are really hard to get a hold of someone if you have a problem because clinics aren't open so I would much rather be discharged on a Monday.
7. That work would get done at our house so that we could go home.
8. That Livi would be happy again. She spends her days with her head cocked to the side that the tube is taped to. She is so aware of it. She just sits and sighs. She even sighs in her sleep. They say when you are sad you don't heal as well and she is most definetly sad.

Sunday, April 01, 2007

Day +22

Adjusting to the tube has been much harder than expected. Livi is sad and always aware and nervous about the tube. If the meds are cold she cries when they go down. And the formula being given through the tube made her poop close to 15 times today. Please pray she will adjust to it and be able to enjoy her days once again.

Congratulations to the Spinetti's!! Can't wait to meet your newest addition. Love you guys.