Drama!

My oh my...the ways we find to fill time :)

We've had several really bad belly days for Abby...and I mean bad--she turns grey, sweats and just generally looks horrible with her feedings.  We are running them at 40 in 3 hour cycles.  It's hard not to be discouraged with how hard it is for her.  We did a CT scan of her head yesterday just to be sure there's nothing we're missing.  None of us thought there would be, but I wanted to be sure.  I haven't heard from the neurosurgeon, but he hasn't' come in to say she needs a shunt either.  I'm assuming that means she's ok. 

They stopped one of the antibiotics she's on to see if that was making her sick.  Her baclofen pump got turned back up too!  Yay for that :))  She needs to be looser.  All of that tone coming back has been really hard for me.  She needs to be repositioned often, so my back was starting to hurt.  Her being looser helps with that. 

Hannah texted me yesterday to say something might be wrong with Emily's new G-J tube. I almost choked when I opened the picture of it she sent.  Um, ya think?  The balloon was deflated and it was almost out.  AHHHHH!!

I tracked down the doctor, who arranged for interventional radiology to get her in ASAP.  I had to run out on Abby again to get Emily.  This time, Abby flipped out.  She was not having Mommy leave her for the third time this week.  The doctor gave my poor Abby a nice, happy dose of Ativan to help her not care quite so much about it.  I don't feel good about that, but I think it's better than her being so stressed. 

I ran home, grabbed Em, Hannah and Sarah and made the trip back to the hospital.  What I thought was an awful situation was not quite that bad.  When we got her in, the x-ray showed that the tube was still almost in place.  I think my caregiver accidentally deflated the balloon that holds it in when she gave morning meds.  She must have hooked it up to the wrong side and the water came out.  The balloon being intact meant that we could save it.  It also meant that Emily didn't have the abdominal trauma they were concerned she could have. They moved it back in place, confirmed it was good and we were on our way. 

That was not a fun situation, and my stress level stayed pretty high.  We all went up to see Abby, who was having her typical bad belly day, she just looked even worse because she was tired from the ativan.  The nurse needed to do the dressing change on her central line, so I waited to take the girls back home until that was over.  By then, it was almost 6pm.  I decided to take the girls home and spend some time there.  I've never left Abby awake in the evening before.  The nurse got her to sleep that night.  She washed her hair and massaged her arms and legs before she went to bed.  God bless that sweet lady for taking such good care of Abby and giving me some time off.  Abby didn't love me gone, but she handled it.

I stayed home and cuddled Emily, and then ended up sleeping in my own bed!!  Jeff came home, so he took the early shift with Abby and I got to hang out at home with my girls on a Saturday morning.  That was an awesome, unexpected surprise. 

Now, I sit here with my nauseated girl and no idea of what this week will bring, but so very thankful for an unexpected breath of fresh air that came from a dramatic, scary situation.

~Please continue to pray about the right house in NC.  Jeff is seeing several this week.  We are trying to decide if it's better to live closer to Jeff's work or the children's hospital there.  They are about 30 minutes apart. 

~My awesome church has a team in Honduras this week.  They need lot's of prayers for safety and guidance as they are the hands and feet of Jesus to all they meet this week.  :)

~Pray for Emily to have a good, safe, non-dramatic week.  She needs to recover and she really needs to put on some weight.  She's been running feeds for almost 2 weeks and hasn't gained an ounce :(

Thanks to all of you who walk this road with us, faithfully praying for my girls.  It means more to me than you can ever know <3

3 weeks

Today is our three week mark here in the hospital.  I haven't counted the days like I did last time, but apparently somewhere in me, there is a 3 week wall that I hit.  It gets so much harder, lonelier, scarier to be here.  I just feel upset about it.  The night nurse waking me up at 3am to ask if she could put a humpty dumpty safety sticker on Abby didn't help with the whole feeling upset thing.  :)

Abby woke frequently through the night and was really cranky this morning, but generally had a good day.  Her line dressing change was due for the first time since Sunday.  It was pretty rough on her; it's still much better, but VERY painful.  It's hard to tell what's underneath the surface, which is still red and scabbed, so she'll stay on IV antibiotics a while longer.  The skin around the original Broviac site is a little soft which could mean it's deeper than we can see.  Please continue to pray for her with this.  I can take a lot, but watching her cry in pain almost destroys me. 

She handled her feedings relatively well and almost on time.  She was pretty sick by bedtime, but otherwise got through the day without too much trouble.  Child life came in this morning and told me they were offering the mom's free facials.  I was excited about it for a lot of reasons.  Getting out of her room for 30 minutes; doing something purely for me for a bit sounded delicious, and I thought it was a nice little gift from God as I didn't want to spend a 22nd day in this room.  I chose the 3:30 time because I was sure I'd be done with Dr.'s rounds and have Abby settled by then. 

That's why I got a call around 1:30pm telling me Emily's J-tube was clogged and they couldn't get her feeds to run.  I tracked down the Dr about what to do.  Apparently, meat tenderizer and Cola in the tube can break up the blockage.  I had to leave Abby and run home to deal with the problem.  Thankfully, I was able to get the tube running again, but ended up being really concerned that she wasn't getting the level of care she needed.  I don't think my caregiver realized how specific her care was.  I spent some time re-organizing her room and making signs with instructions for her care all over the house.  I also gave her a shower and cleaned up her new tube because it looked a little red.  She had a 100.6 fever when I got home too. :( 

I gave extra water through her tube for hydration, and between that and a nice warm shower she seemed to feel a little better.  Her temp was 99.8 when I left.  She's doing really well, but she's very fragile too.  She requires a lot of care.  I'm so torn between wanting to be there and knowing that Abby needs me too.  I'm doing the best I can, but it never feels right.  The tears from Sarah who didn't want me to leave didn't help either. 

I missed my facial, but still didn't spend the whole day here at the hospital, so I guess in some weird way, that's good.

I've been getting TONS of information on a daily basis.  What theory each Dr/nurse/specialist thinks may be wrong with Abby.  I got an email tonight from a family member packed with alternative things I should consider giving Abby.  It's not that I don't appreciate it, but I feel a little overwhelmed with all the information.  Then I feel guilty if I don't at least try anything that I don't think would harm her.  Then I just feel tired and don't want to do anything.

Tonight, I was praying for wisdom.  I need serious discernment about what's best for Abby, but I also need confidence to follow through with what I believe she needs.   I need confidence to follow through with what I believe God is doing in our lives.  As I left my house this afternoon from my unexpected visit, I noticed a sharpie on my desk.  I wasn't sure why, but I grabbed it and threw it in my bag.   As I prayed this evening, I felt the Lord say "scripture" (I LOVE instant answers to prayer!!).  I'm hearing so many voices, listening to so many people that the word of God is fading into the background.  I am breaking that Sharpie out and taping scripture all over this room. 

So if you will, leave me a verse.  Speak His words to my heart and your own.  Help me to focus on what's important and glorify Him to everyone who walks in this room.   I want to hear His voice!  I pray that every time I feel discouraged or alone I will look around this room and know that He is with me. 

If I sit here 3 more days or 3 more months, I am going to be surrounded by the only word that hold any truth in this world.

good

So many things are going through my head tonight; filling my heart. 

Emily went home today.  I was looking forward to it and felt ready for it, but when the doctor cleared her, I experienced an unexpected wave of sadness.  I certainly don't want her here, but being able to see her and take care of her every day was comforting.  I didn't want to be away from her.  I didn't want to trust others to care for her.  I wanted to hear her laugh and see her get better everyday.  I want to watch for any sign that she's not.  I can't do any of those things, so I packed my baby up, and dropped her off at home. 

After a quick tutorial on her new schedule, tube, and meds I kissed her smiley face as her dog settled in faithfully on her feet and left her.  Who in the world brings their child home from the hospital and leaves them with a baby sitter?  Mothers who have left another child in the hospital, that's who. 

I came back to a very nauseated Abby and a heavy heart.  My sweet girl is having a rough time.  Her line is better, but her tummy is worse than ever.  She's mostly supported by TPN, taking in a few feedings everyday.  The doctors are all trying to help her, but there are very few options for what she's dealing with.  Today was the first time the doctor mentioned the possibility of her not making it through this--not this particular hospital stay, but eventually something else will happen that she can't fight. 

Honestly, I knew this, but hearing it was hard.  I have mixed emotions about all of it.  I want her here.  She is my daughter...I have loved her since before she was born, since the moment I knew she was coming.  I have grieved her, held her, and given her all I've had to give.  Yet, with the same intense love, I can't stand to watch her suffer.  Sometimes I pray that God would take her quickly if she's not going to get better.  I don't want her to live for years so sick. 

I watch cars go by, people walking around, the world moving forward and wonder if anyone else is wondering if their child is going to live or die.  I wonder if they understand how fragile it all is.  So much of my girl died many years ago.  I can not willingly let go of more.  I just can't.  And the bottom line is that today she is here, and I have to figure out what's best for her in the moment we're in. 

I have to move this family.  We really need a lot of prayer about this entire process.  I just can not believe that all of this does not work together for our good.  Nor can I understand how I will be able to bring my family back together again.  I have to continuously trust the same God who knew my child before she was formed in me to carry us through. 

I keep thinking of the question I posted a while ago, what if I woke up tomorrow with only what I've thanked God for today?  I would wake up without so many big problems.  I would wake up without a sick child.  I haven't thanked God for this, I can't even imagine it.  But that made me think, if I really trust Him...really believe Him...really understand his promises to me and my girls, would I not thank him for even my troubles?  Would I not praise Him for loving me enough to teach me?  Without all of this, without what I'm feeling right now, how could I know the immeasurable gifts of grace or mercy; or how very deep our God given capacity to love could be?

God is good in every single situation.  I am grateful, confused, and yes, saddened.  But God is good.  All the time. 

Better~

As awful as yesterday was for Abby, I didn't have high hopes for today. 

The surgeon came in and I held my breath as he removed the bandage from her chest.  I hated the thought of seeing that sore first thing this morning.  And then a miracle! 

It look a thousand times better.  The swelling, oozing and redness were virtually gone. 

The hole is still there, as is the infection, but it doesn't look nearly as angry.  She's fine.  The line can be saved. 

It's unbelievable that in just 12 little hours, what seemed hopeless is restored.  She needs no special treatment and just a few more days of antibiotics.  Amazing!  Seriously, miraculous. 

It changes everything.  A usable home line means she can leave here in a few days, when yesterday her Dr thought she could be here for a month.  At the risk of being repetitive...Amazing!  I am so thankful! 

The Baclofen pump being off is exactly what I thought it would be.  Awful.  She's so stiff and uncomfortable.  She was awake for hours last night.  Not doing anything, just awake :(.  Still hoping that's not the problem with the belly. 

Today, I'll try not to worry about all of that and thank God for some good news that I desperately needed. 

Happy Sunday~

Abby the Brave

How I wish my sweet girl didn't need to be so brave. 

She's sick.  She's just a sick girl and there isn't really another way to say it.  Her belly is not working any better than it was in March.  She is sick, nauseated, and bloated.  She just looks sick.  She has moments during everyday when she seems to feel a little better, but in general she's pale.  Everyday seems a little worse. 

**line description warning!!**

She has an infection at her line site.  I thought about a picture here, but even I have limits.  They finally took the dressing off today to clean it, which set off a series of calls and opinions about what to do with it.  Basically, there is a moderately deep hole where the old Broviac was that is filled with infection.  That has spread to the new line making the insertion site badly infected.  The skin no longer holds the stitches in and all of it is draining causing condensation under the bandage.  The buck stopped with the surgeon who had the nurse re-dress it with gauze to absorb whatever may drain.  They also re-cultured it.  I was glad for the gauze, I didn't want to see it anymore.  It upsets me.  Tomorrow the surgeon will clean it up.  Most of the doctors think we can still save the line, so I'm praying they are right. 

Brave Abby endured that pain with a steady stream of "ow", but no tears.  The same little girl who cries like the world is ending when I walk out of the room sat stoically as someone poked a q-tip in a hole in her chest. 

We continue to need the line because her belly is not processing her food well.  We are at 30 as far as rate goes...45 to go :(.  We did a gastric emptying study yesterday.  They put food in and followed it for 2 hours.  We only put 2 ounces in because we thought Abby could handle that.  The results of the test were that at the final film, 4 hours after we put the food there 85% had left her belly and was sitting in the small bowel.  She did not process 2 ounces in 4 hours.  No wonder the poor kid has trouble.  The GI doctor was happy it left the belly at all.  I did not see this as good news because it never occurred to me that it wouldn't leave, it's just soooo slow. 

In a last ditch effort to help her tummy, the doctor decided to have the neurosurgeon come in to turn her Baclofen pump down.  They want to be sure the medicine isn't slowing her tummy down.  The NS didn't think it was, but agreed to try it.  They turned it down 20% while I was in the cafeteria.  Thank God.  I was down there seriously re-thinking that plan.  I hope it doesn't help.  I think she really needs the pump, so if it's causing all this tummy trouble, we'd be in a crummy place (again) with her.  I want her better, she's just so stiff and uncomfortable without the right dose running through the pump. 

Emily is doing well. The PICC came out today, so we are just working on tweaking a few meds and schedule-type things before she goes home Monday.  She hasn't run a fever today at all, so we all think it was just time for the PICC to go.  I can't tell you how thankful I am that Emily has done so well.  She still has a long way to go physically, but in every other way, she the same Em :)

I've had a really hard day.  Emotionally, dealing with all of this has been overwhelming.  There is so much information to take in and process; so many decisions to be made all the time.  This move looming over our heads is about to make me lose my mind.  We had hoped to move the last week of July, so watching ANOTHER move date come and go is almost more than I can bear. 

As I was explaining this to the Dr. today, he mentioned that we may be able to transfer Abby to another hospital in NC.  We hope that we don't need to do that, but it's a very real possibility.  It made me feel better.  I think I needed to know that no matter what happens, our family can be together.  It's obvious that waiting for her to get well is not a wise plan.  We are moving forward with our move and praying Abby is well enough to go with us.  Lot's of prayer and planning need to go in to the next 2 weeks!  My girl and I may have to be much braver in the next few weeks than either one of us would ever wish to be. 

Lord, only You could work this out.  I thank you for what you've already done and for what you will do.  You are my all in all.

To end on a good note and some sweet pictures, child-life decorated the kids rooms this week.  It was really sweet and they both loved it.  Emily also got a very special visit from a CCI facility dog Murry.  It made us both miss Nola, but it was fun.  

My eye is finally healed enough to be able to handle the light from the computer.  Yay!!  That has been as much of a trial as dealing with Emily and Abby have.  Thank God it's better. 

I went home for a while tonight to see Hannah and Sarah.  I hadn't been out of the hospital since Saturday, so I really needed to get away for a bit.  I've decided I love my home.  I always knew I did, but today I walked through my sweet house and realized how much I love it.  It's so comfortable and so us.  I took a quick nap in my own bed.  Usually, when I lay down at night I think about how we should get a new mattress.  Today, I thought it was heaven.  I am so thankful to be able to go home, even if it's only for a few hours. 

Abby has had a very difficult few days.  She hasn't tolerated her feedings at all.  Today, she did a little better, but she's still only running at 25.  We are going to try for 30 tomorrow.  It's so frustrating to have been so close to being done with it, and now we are essentially starting over.  She's nauseous, even vomiting.  We had to set up suction last night because she was choking on her saliva/ tube feeding.  It's horrible watching her go through this again.  Coming home without TPN would be an absolute miracle. 

Her central line is infected at the place it goes in to the skin.  Badly.  It looks very red and irritated and today it's seeping with the skin turning white from the infection.  They started her on IV antibiotics yesterday.  It's slightly less red today, although it has a larger area of what is probably dying tissue.  I know it doesn't sound cute, and trust me, it's not.  The infectious disease doctor saw it today and isn't sure we can save the line.  She has no fever and we don't think it's in her blood stream, but it's still scary.  It could be contributing to her feeling so sick overall. 

She had music therapy today, which lifted her spirits for sure.  She's resting comfortably now.  :)

Emily has been a hospital champ.  She's been cruising right along with feedings and stopped TPN tonight.  She goes up 10 everyday with absolutely no problem.  It's unbelievable how different it is from what we've experienced with Abby.  Emily feels great.  She's been laughing and playing everyday.  All she has to do is move up on those feeds and we're out of here.

Her blockage will clear as she gains enough weight to lift her mesenteric artery off of the duodenum.  Clearly I am not at risk for this condition ;)

Emily's new tube--because the bowel is obstructed just outside of the stomach, the g-tube portion drains off what can't move past as the J-tube feeds her.  It's kind of cool!

Oh wait a minute, not so fast!  I came back from home tonight to find out that my little stinker has a 102 fever.  AHHHHHH!  I'm hoping it was a one time fluke.  She got toradol, so it came down to 100.5, but I'm wondering what in the heck is going on.  Hopefully it's nothing to worry with.  But, of course, I'm worried.  Her heart rate is 106 while she's sleeping.  That's high for her and tells me something is up with her. 

I don't want anymore complications.  Abby has been here more than 2 weeks with no end in sight; Emily for just a week and for most of it, she's done well.

This has certainly been a challenge for all of us.  I am more tired than I thought I could be, just because they both need and want me.  Emily is a little spoiled--admittedly our fault---because she isn't used to watching commercials, and this wonderful hospital doesn't have a DVR.  Poor kid!  LOL.  She does yell EVERY. SINGLE. TIME. a commercial comes on.  My sweet child needs to learn something about patience!

Doing fine

I've wanted to update, but every night I'm so tired, and every day, so busy. 

Emily and Abby are both fine.  I've had conjunctivitis since Saturday and I haven't been feeling well.  I'm on my second antibiotic drop because I had a bad reaction to the first, making my eye worse.  This isn't a huge problem, but not touching it or the girls too much has been.  It's also VERY painful.  I'm praying it clears soon. 

I'll update more tomorrow, but for tonight:

~Emily's G-J-tube is in place.  It's going fairly well.  We've started feedings in the J-line and continue to drain the G.  I'll explain this more tomorrow, but pray she tolerates the feedings.

~She pulled her PICC down some.  It's still in the subclavian, so usable, but no longer a going home line.  It might be even further down now. 

~Abby's struggling with feedings--- big time.  She needs to do better tomorrow. 

~Her new Broviac is infected around the skin.  The line is fine, she has no fever, but the site looks really bad.  The site of the old line is very close to the new one and it is open and oozing.  I'm very worried about this.  She is definitely the sicker of the two girls. 

Jeff and Grandparents left, everyone else is well. 

I'm going to try to get some much needed sleep :)

update:

I started this Saturday night:

Emily and Abby have each had good days in their own ways. 

Abby went for her line first thing this morning.  Her Dr. put the new Broviac almost where the old one was.  It looks good, although a little more menacing to me because of it's double lumen.  The subclavian came out, so line-wise, I think we're good. 

Abby's alright, but she looks a little thin to me today.  She's responsive and happy that her grandparents have been here.  This evening she's been very nauseated and the belly is swollen some.  We're venting her and trying to keep everything going in nice and slow.  So far, it's only been meds.  If that's an indicator, she's being typical Abby. 
 Now, Emily.

First, she went for a PICC line this afternoon.  They put it in in the ICU --which is a very nice new unit--so we spent about 3 hours there today.  I was thankful that we didn't stay there--as nice as it is, there are some very sick children there.  She couldn't have done better!  It went in with the first stick and she woke up with no problems.  Thank you Lord!  I also brushed her hair while she still sleeping from the anesthesia, this is both funny and a blessing, because it was a MESS!! 

Sunday morning:

Emily was supposed to go to get a special tube placed to move past the blockage this morning, but for whatever reason it didn't happen.  That happens a lot.  We think one thing is going to happen, but it doesn't or something different goes on.  It's one of those things that I expect a little in the hospital, but has proved to be very difficult when I have twins here.  I'm trying to make sure I'm there with each of them for procedures or tests, for them and to make sure I understand what's being done. 

When I came back from Abby's surgery yesterday, Emily was gone.  I didn't know where she was or that she even had a test ordered.  She had gone for an upper GI to confirm her diagnosis.  When I got down there, they had already injected barium into her stomach.  I had just had a conversation with the surgeon about NOT putting anything in her belly so I was worried.  It turned out okay because they did indeed confirm SMA syndrome and then pulled the barium back out. 

So far, Emily is on for tomorrow morning for the tube.  She continues to have quite a bit of drainage from her G-tube, but that's still normal.  She is much more comfortable and will change from Morphine to Toradol today.  I hope to get her out of the room to the playroom too! 

She started TPN with lipids last night.  I know she needs it, but seeing that bag hanging again for another one of my children made me cry.  It just hit me suddenly that we are doing this again.  Seeing it made me recognize that she was in for a long haul. 

Dr Guedes (our beloved doctor), said it's not unusual that children like Emily and Abby would have complicated medical conditions or that they would be difficult and time consuming to manage.  It was unusual that we went for such a very long time with so few problems and hospitalizations.  It's like they are making up for lost time. 

Emily will be on suction for anything up above the blockage (Kathi---you had to put that suction tube in my bag--in case I ever needed it, right?!!!! lol :)  and feedings directly into her intestine below the blockage.  This could take a few months to get resolved.  There's the potential for numerous problems with what or plan is that I won't get in to today.  But the bottom line is that if it doesn't work, she would need a surgery to reroute the bowel.  We pray we can avoid this because it has very serious risks and a potentially difficult recovery period.

I was able to leave the hospital last evening for a while.  I wanted to get my gross swollen eyeball out of here!  I took Hannah and Sarah to dinner and got them some groceries.  They are doing well and handling this as good as anyone.  They are both concerned about their sisters, but we all are hoping for home by the end of the week.  I was telling Sarah how sorry I was for so much confusion because I know she is a creature of habit.  Offended, Sarah replied "I am NOT a creature of habit.  I just like to have the same routine everyday".  I, of course, apologized for the misunderstanding :))

I've gotta go take care of my girls, but please continue to pray for us.  I have absolutely no idea how to do this.  It's never happened before.  The Grandparents left today and Jeff goes tomorrow.  Then it's me.  This is a very good time to deal with tomorrow, tomorrow.

All in

Sorry I didn't update last night, but the need for sleep won over the hope to write. 

Emily was admitted to PCU Thursday night with a bowel obstruction. 

My helper came up to stay with Abby so her Grandparents could get some rest.  I stayed with Emily. 

She didn't sleep at all the whole night.  She was in  a lot of pain and still confused from having such long seizures and being so sick.  They hooked her g-tube up to suction where it drained a lot through the night.  To me, it looks like we are deflating her like a balloon.  I have never seen her so thin.  It's like her weight just melted off.  Her heart raced and she twisted and turned constantly, unable to get comfortable.  It was scary not being sure what was going on or whether she needed to be in surgery. 

We expected Abby to go in for her line placement yesterday morning, so I waited by the phone to leave Emily  for Abby's procedure, but the call never came.  In the end, the surgeon had decided he wanted the line culture from the subclavian (they put in last Saturday) to be clear for 72 hours before he put the new one in.  I'm not actually buying that, as word on the street is, he forgot.  Either way, it's going in this morning.  We are in the surgical waiting area right now.  She's getting another Broviac on the same side as the old one was, they will just tunnel it in the other direction. 

Emily has SMA Syndrome.  Basically, the mesenteric artery and aorta have compressed the duodenum between them causing an obstruction.  She has been in a lot of pain from this condition.  The cure is to actually gain weight and have her own fat lift the mesenteric artery off of the bowel.  This is a relatively rare condition, mostly being associated with people in body casts who lose weight quickly.  Up until Emily presented with symptom's, she was a good weight for her.  She's always been tiny, so she doesn't have a lot of body fat anyway.  It's possible she got a little virus over the weekend like we thought, and the ensuing weight loss caused the condition.  We're not sure how long she'll be here. 

Today she will go to endoscopy where we're hoping they are able to run a temporary tube past the blockage and into her small bowel where they will drip slow feedings in.  She will also have a PICC line placed and begin TPN with lipids today.  She has been on Morphine which helped significantly with the pain.  She slept well last night, before she pulled her IV out at 5:30 am.  :(

This is a busy day for the Cushman girls! 

Last night, Emily moved to the floor and Abby moved to the room on the other side of Em's.  There's an adjoining door which makes it very convenient.  I was thankful to have my friend who came and helped us get the girls moved and then made sure I got something to eat.  By that time, I was on auto pilot from lack of sleep and barely able to think.  Miraculously, we make through the day and had a decent night.  Both girls slept pretty well, as did I.  I did wake up this morning yucky, gross pink eye.  I'm trying not to touch my kids. 

This will certainly be a long day, but thankfully everyone is doing well.  No more am I bummed or upset about being here.  It's like going to the beach and not wanting to get in the cold water, so I tip toe in complaining all the time.  Then a wave comes and knocks you all the way in.  After the initial shock, it's not so bad being in the water.  That's how I feel now.  I'm in, we're all here, and we just have to swim. 

I can't think about our move or TPN, or anything other than being here and taking care of them.  There will plenty of time to deal with all of that, but for now--I feel peaceful.  No doubt a gift from God.  I am thanking Him for what I can not understand, but am choosing to see as blessing.  There has to be a reason for all  of this, so I trust in Him.

Really?

This has to be fast.  Emily is being admitted to PCU.  She is having almost constant seizures, to the point that she didn't even recognize me today. 

We thought she had a virus on Sunday into Monday.  She seemed a little better Tuesday, but Wed her grandparents said she was real lethargic.  They thought it was because she was having a lot of seizures and had to have extra medicine that makes her sleepy.  When I talked to them, that made sense to me too. 

When I got in today, I knew something was really wrong.  She was gagging and confused.  I vented off about 500cc of green stuff--she's since had much more.  I took her to the hospital, where they found a blockage in her small intestine on CT. 

They're giving her loading doses of seizure meds and I'm not sure what else happens now. 

Abby's still on the regular floor, her GP's stayed with her all day.  She is not loving what's going on.  She goes to surgery in the morning for her line placement. 

This is all scary, I think overwhelming stuff.  I really can't feel anything now because I'm in a little bit of shock.  I'll post more when we know more.  Thanks for praying for her.

Day 7

I'm looking across the room at the TPN, lipids, med pumps, and an unused feeding pump.  I remember how grateful I was the first time the TPN bag hung 5 months ago.  I was so desperate for Abby to have nutrition.  Today I only felt sad.  When they finally brought it in tonight, it seemed uneventful.  I wish I felt grateful.  Somewhere in there is gratitude, I'm sure.  It's so hard to feel thankful for something I absolutely don't want again. 

I have to get over it, but alone tonight, I think I can give in to it.  It's just sad. 

Our hopes for home on Friday are all but gone too.  We held Abby's feedings today because of the disaster feeding was yesterday.  Her tummy is making a little more noise today, which is encouraging, but starting the TPN today means she'll certainly need a more permanent line.  Another trip to the OR is scheduled for Friday.  I haven't talked to the surgeon yet, so I don't know what kind of line it will be.  Likely another Broviac or a Port of some sort.  Either way, anesthesia always slows Abby's belly down.  It doesn't really matter how little she gets apparently.  She's just not going to handle it well. 

We don't want to work on pushing her feeds up this week only to have to start over again next week.  Our plan (I cringe even saying it, but we have to try) is to run some very slow, probably half strength feeds tomorrow so her tummy doesn't completely forget it's job, then surgery on Friday.  We plan for and expect the ileus over the weekend and hope to resume feedings on Monday.  She'll also have to continue the antibiotics until the new line is in, just to be sure there's nothing left to cause an infection in it. 

If we can get on some sort of feeding / TPN cycle established during the week, they hope she can head home next Friday. 10 days from now. 

Emily is home struggling with seizures.  The virus she had very likely started a seizure-cycle for her.  She's up at night seizing/ then fussing, and alternating sleeping during the next with crankiness and headaches.  It's been a rough few nights for her poor Grandparents.  I'm praying she sleeps and stabilizes tomorrow.  Other than seizures, she's better. 

A few months ago, seizures ruled our lives.  Tonight, I wish that was all there was to handle. 

I keep thinking of some of the other blogs I read.  A few written by parents of children who have cancer.  Over and over they write about how they just want their children to survive intact.  Don't let their personalities change.  Don't let them lose their abilities.  They are begging God to not let their children lose what my children have lost.  I don't blame them a bit; I still do that too.  I still feel as desperate as I did in the beginning for my girls.  Quieter maybe, but it's still there.  I want them healed. 

This is hard to go through.  Here I am now, on another day 7 in the hospital and all I can do is put one foot in front of the other and walk by faith, obviously not by sight.  I'm still praying for healing for Emily and Abby-- I just don't have a picture in my head anymore of what that means to me.  I'm relying on the Lord to show me what it looks like to Him---and kind-of praying he shows me in less than 10 days! 

New Plans

I was thinking today about how I thought I'd feel when Abby's Broviac (central line) finally came out.  I anticipated relief and a feeling of life returning to normal.  When it came out on Saturday, it wasn't quite what I'd hoped for.  Because it was a source of infection, what had been a great line and our friend, was the enemy.  Rather than thanks for all you did for us and good-bye, it was sorry sucker, you gotta go. 

Today, the infectious disease doctor said we'd be fine to stop the antibiotics tomorrow because it will be a week and that should be long enough with the line out.  The problem is that she also wants the subclavian line that the surgeon put in Saturday out.  She doesn't want it in more than a week.  I proudly reminded her that Abby kept her 7-10 day femoral line for 22 days.  The poor woman nearly fell out of her chair; then she reminded me that my luck had run out with lines. 

So began the debate as to whether or not a new line was necessary. 

My vote was no, let's see if she can handle it.  The doctor thought "no for now, but I doubt she's ready."  Abby apparently thought she needed it.  Early in the week, I foolishly asked how long she could go without any real nutrition.  Today, I can answer with confidence: 10 days.  She can look good for 10 days without much running in the belly.  She handled her feeds terribly today.  She was nauseated and bloated, which isn't incredibly unusual for her.  The return of icky color and lethargy along with very high residuals and low sats all day was. 

We've stopped feeds yet again and start TPN tomorrow.  Even as I write the words, tears fill my eyes.  I am so sad to be here again with her.  We were sooo close.  I'm trying to remind myself that it won't be the same.  We have the right formula, we know how she works, but still.  She's taking less now than she was when we left the hospital last time.  She has to be here through Friday, so I'm still holding out hope that she'll go home only on tube feedings.  I know it sounds naive and just a little denial-like.  Perhaps it is.  I don't care.  I don't want to go home on TPN.  I want to move with my husband---and again --the tears. 

Emily is better.  She woke up nauseated, but has slowly been able to handle liquids today.  The rest last night did her good.  She must have had a little virus.  I can't tell you how thankful I am that she didn't have to come to the hospital today.  See, that's how I'm feeling about Abby.  Last night I was sure Emily would end up here today, but she's safe and sound in her own little bed.  I can't begin to imagine how Abby could possibly end up at home without a line and probably TPN, but she could.  She could turn right around and do great. 

It's certainly a set back to start TPN again, and I can't help but feel disappointed.  The Lord is in control and not surprised, even if I am. 

I am counting my blessings too; knowing that there are many and undoubtedly more than I can see.  Even if it's not how I hoped it would be, Abby is safe.  If you recall sweet Jordan I wrote about here being so similar to Abby and dealing with the same issues.  He went back to the care center where he lived shortly before Abby went home.  His bowel perforated last month.  He died surrounded by the nurses here who loved him and the people who cared for him everyday.  My heart is heavy with the loss of our young friends recently.  It's impossible to distance myself from it, and yet I don't know what to do with it.  It's such a long sad good bye. 

I sit here not knowing how to close.  I'm longing for some faith filled statement of trust, and it's there--the trust--that absolute believes in the sovereignty of God never leaves.  But so many other things swirl around as well.  Fear, that I'm always reluctant to admit.  Confusion that I can't sort out.  Sorrow, for so many little losses each day.  Longing, for what I'm not exactly sure.  And Love, so much love for that little girl in that hospital bed. 

Dear sweet Lord, as I've prayed for more than 13 years, hold my girls in ways I can't.  Be with them in ways I don't understand, and love them as only You can. 

Sick in our house, take 2

I'll cut right to it:  Emily is sick.  Puking, fever, probably dehydrated.  Praying she's okay through the night.  She's having seizures, so I gave her the extra seizure med for it, but now I'm worried with how dehydrated she is and how quickly she fell asleep it's too much for her.  My in-laws are with her, so I'm just praying she has an alright night.  Last night she was up ALL night sick.  Sick all day today.  When I got home, I vented off about 400cc of gross green stuff.  No wonder she was so sick.  I hated leaving her to come back to the hospital.  She should be curled up in my bed with me :(

If by some miracle she wakes up tomorrow able to tolerate feeds, I think she'll turn around quickly.  If she's not taking them first thing in the morning, she's going to have to join Abby here at the hospital.  Pray for Grandparents because it's a huge responsibility caring for someone else's sick child.  Pray that Emily does well tonight--we'll deal with tomorrow in the morning. 

Abby hasn't had fevers in a few days.  She's doing generally alright.  She's not tolerated her feedings well at all.  She's at 25cc/hr back on 3 hour cycles.  I hate tummy issues.  Abby hasn't tolerated feedings in 9 days now.  Amazingly she looks pretty good.  We'll have to make a TPN decision soon though.  If that gets us out of here, we'll take it.   She'll probably spend most of the week here anyway just because of antibiotics.

Overwhelmed is an appropriate word for how I am today.  Worried too.  Emily is so tiny.  Sometimes I forget how little she is.  She has such a huge personality, it's hard to remember what a fragile girl she is when she's sick.  This is not a fun place for a mother to be.  Torn between two sick children. 

This has to get better soon!  I pray. 

Abby today:

She did great in surgery this morning.  The Broviac came out without a problem and a new line went in her right subclavian.  It's more like the femoral line in that even though it's central access, it's more temporary.  It's working well, although it has a good amount of redness around the site that we are watching.

She looks so much better now that the Broviac is out.  It was obviously making her sick.  Her color is back and she was even smiling some today.  The Dr. also changed the Benadryl to Atarax which seems to be better for Abby.  She had continued to have a little bit of a rash on the Vancomycin, even on Benadryl and that seems to be gone this evening. 

Overall, she's been fever free and although a little sleepy, doing well. 

Which leaves room for her belly to act up a little.  She hasn't eaten much at all in almost a week.  She had an increase in nausea this evening and we decided to vent...there was quite a bit in her tummy which really shouldn't be there.  She has some very faint tummy rumbles, but even a short surgery probably impacted that fragile belly a bit. 

We hope to start feeds again tomorrow and try to add some water to the mix.  She really needs to try to go home off of fluids so we don't need another line--if she ends up needing home IV antibiotics, this won't matter so much because we'll need a PICC anyway, but I'm hoping she goes home IV free and we can run her across the state line into NC and get her set up there.  No one has come to a decision as far as how long she needs antibiotics.

I know we could go in many different directions depending on how she does now, but tonight I am going to sit here in her hospital room simply grateful that she looks good today.  Her infection is under control and she is sleeping peacefully.  I went home to spend a few hours with the girls and clean a little for my in laws who are coming in tomorrow to take care of Emily.  They are all doing well, and even though it's hard to be apart, I'm always proud of the way they handle it. 

Hannah leaves for a new student week at Pfeiffer tomorrow.  I'm so excited for her.  It's a neat time in her life.  I wish everything wasn't so complicated and we could just have fun with having a college girl, but like I said, tonight I'm being thankful for what I have, not pining for what's missing. 

Sunday's in hospitals are usually pretty quiet, so I'm hoping Ms. Abby goes with the flow and has a nice quiet day herself.  Doesn't a nice, quiet Sunday sound lovely?

Faith by numbers

I've had another long day at the hospital with Abby.  It started with a very cranky girl.   I think that may be from the Benadryl she needs every six hours for sensitivity to one of the antibiotics.  It could be making her a little nutty.  We also decided it's possible she's having some seizures, although the doctor says she has so many other problems that it's not worth looking at now.  We all agree that's probably what we're seeing, but she's still pretty sick, so if she's still doing it when she's well we can reevaluate the need for and EEG. 

I'm going to try to make this long day a short  post.  The infectious disease doc came in and spent some time explaining what was going on.  I really liked her a lot.  She explained that the common skin bacteria that never makes kids sick, actually never makes kids sick.  There are only two cases in the literature, both on chemo and neither had the high fevers Abby had.  But Abby has 3 positive cultures for that "bug" as they call it.  It's probably in the line and able to colonize in that small space. 

Sadly, the line must come out.  She goes to the OR in the morning (I'm not sure what time) to take it out.  She will get another line, either PICC or peripheral in the OR too.  I'm really torn about the line she may need.  I'd like a regular old IV, but I don't want to be needing access that we don't have down the road like before.  I'm praying the Lord directs the surgeons hands and she leaves that operating room with the only line she'll need in place. 

The doctors all hope pulling the line will go a long way in helping her get better. 

That was how we thought all day.  I was having a really hard time wrapping my head around Abby being sick from something she shouldn't be sick from.  I couldn't imagine how her immune system could be so low that she acts like a child on chemo.  It made me concerned for her future and exposure to everyday stuff. 

Then around 7pm we heard that the culture DID in fact grow staph neg.  That's not really good news, but it makes a whole lot more sense than what we've been seeing.  The line probably does have that common skin bug, but it's not what made her sick.  It's likely the staph.  I'm not sure how that changes things, but I like not feeling so confused. 

She seemed to be trying to run a little temp this evening.  It went up to 100.4, but her Toradol was due, so it took care of it.  This could be a long road, or it could potentially work out quickly.  Abby does look better today, and had a relatively quiet evening.  Thank God for quiet. 

My friends came by to visit for a bit this evening (thanks for dinner girls) and we started talking about healing.  I reminded them that God is in control and heaven is the ultimate healing.  They commented on my strong faith as I was looking at the monitor to check Abby's O2 sats.  I joked that I had monitor based faith.  I can say those things when Abby's looking better and her numbers are good. 

Later I started to wonder if I really have faith by numbers.  When I don't understand what's going on and I feel confused and afraid, how's my faith hangin?  When she's been sick the last few months I watched the monitors.  When she's home, I look to the labs.  Where's the white count?  Platelets?  (both low by the way)  How's the temp?  How much did she take in or put out? 

When the numbers are good and she's treading water, I find myself saying that God is in control and all of our days are numbered.  I tell people if she can't have quality of life, then I'd rather she be free in heaven.  But let one of those numbers be off.  Let her look bad and all I want is my child fixed.  Not in heaven, but here with me.  Sure, I still trust in God's plan, but the depth of that trust is certainly occasionally about the numbers.

I don't want number faith.  It could be money, time, people, stuff; think of all the ways we count everyday.  My faith should be as immeasurable as God's grace is.   Is prayer only answered when I see the numbers I hope to see?  Of course not.  Is he worthy of my trust only when He does as I've asked?  I hope not. 

Tomorrow I will sign consent again to allow my daughter to go to surgery, to leave that room in pain and confused.  I will let them pump powerful medicines into her that make her feel sick.  I will do this because I can see that it's best for her.  I know that allowing her this pain is actually helping her.  I am trusting that my Father is doing the same for me.

I'm sure I'll still blog a lot of numbers in the coming weeks, but my faith can not live by numbers.  I am going to purpose to live outside of the lines I can see, and trust He who sees all. 

"For we live by faith, not by sight"  2 Cor. 5:7 (niv)

Hit by a truck

Have you ever had a day? 

A day when the sun finally went down, and you sit down aching and bruised and just know that somewhere there had to have been an invisible truck that ran you over? 

Abby is sleeping quietly in her hospital bed.  Finally.  She's quiet and fever free for now.

She ran high fevers through last night.  She would be burning up, then sweating profusely as the fevers broke.  We had to change all the linens on her bed 3 times last night because of sweating. 

Today, her highest temp was 101.7.  I thought that  was pretty good considering the previous days.  The doctor thought she shouldn't have run a temp at all today with the antibiotic she's on.  He fixed that by adding another one this evening. 

The only clear things about today is that she has some sort of infection--and that Abby never does anything typical.  Her blood cultures are all positive, but the bacteria that seems to be growing is not something that grows in healthy immune systems.  It's a common bacteria found on every one's skin and typically doesn't colonize in the blood.  We don't know what to think about this. 

Her echo, urine, and chest x-ray were all clear--Thank you Lord!  I always hold my breath a little, even when I know it should be fine.  So many unexpected things happen, right?

Abby was very cranky bordering on confused today.  She's twitching some and occasionally lethargic.  She absolutely refuses to turn her head to the right.  It makes me wonder if something neurological is going on.  Caring for her the past 36 hours has been  a horrific nightmare challenging.  She's been constantly fussing, screaming, uncomfortable, or just way too quiet for a few minutes.  I miss the days when I could walk the floor with my cranky baby to comfort her.  Instead, her doctor added Toradol for pain around the clock in case some of the irritability is because something hurts.  The high fevers for so many days could have just wiped her out too and she's just beyond  reason. 

So far the Toradol seems to have taken the edge off, but she's awake again now.  The poor kid needs to sleep.  Her poor momma needs to sleep too.  I actually ache from being so tired.  Abby doesn't want me near and she doesn't want me to leave her sight.  She's kind of mad that I'm typing now.  It makes me a little nuts. 

What I would give for a hot bath and my big bed.  Instead, I'll appreciate the fact that we moved to the floor at 10 pm and get to sleep on a couch instead of a recliner.  It doesn't sound that great, but trust me--it's a BIG  improvement. 

Unhappy Abby and the dreaded "sleep chair"-- clearly an oxymoron

Tomorrow I'll meet with the infectious disease doctor to try to figure out what's going on with my girl.  In the mean time, if any of you see that truck that keeps  knocking me around, let me know! 

Oh, and pray for us to our not so invisible God who is bigger than any old truck!!

Long day

This morning before Abby ever woke up I knew she needed help.  She was just more than I could do. 

Her temp was still 103.3, but more than fever she looked so bad.  She had a GI apt. already scheduled so I went anyway to have someone else look at her.  While there, I called her pediatrician just to let them know how bad she still looked and how high her fever was.  They were going to admit her anyway just because she needed fluids, but as we were talking they discovered the blood cultures were positive.  Amazingly, her white count was significantly lower today than Monday.  I just don't get that.

We left the Dr.'s office without seeing him and went straight to the hospital.  She was admitted to PCU (progressive care unit).  I was so relieved.  Her fever has been so high all day.  It breaks briefly like it did for me, but comes right back up.  She looks terrible.  She's sleeping a lot today or waking up and moaning.  I think the fever is just taking it's toll.  It makes her achy and maybe a little out of it.

Needless to say, it's been a long day.  She's had chest x-ray, u/a, and an echo cardiogram to look for bacteria in the heart.  I don't anticipate problems with any of those things. 

We should be here at least 5 days, if all goes well. 

I'm exhausted and going to try to get sleep in this little chair.  PCU is definitely less fun than the floor.   

still sick

Another long night of high fevers for Abigail. 

I've been thinking a lot about viruses, fevers, and Abby tonight.  I was wondering why I keep hoping she has something other than a  virus.  I certainly don't want a bacterial infection.  I think it's just that I'd like to be able to do something to help her, and there is nothing to do for a virus except treat the fever.  She's so scary when she's sick.  The feeling of being completely helpless is really what I don't like. 

Last night Abby's fever was 104.2 two hours before she was due for Motrin.  She laid on her bed, grey and shivering, making little moaning sounds, her hands and feet freezing; it was all I could do not to snatch her up and rush her to the hospital.  Instead, I gave Tylenol in between which helped some.  She came down to 103.6, then 102.6.  She's stayed around there even with fever meds all night.  I'm sure she's dehydrating some now, complicating the fever.  Her IV fluids at home only run at 45, so it's not really enough to keep up with high fevers for several days. 

My plan is to take her back to the ER today for some extra IV fluids, and to have her reevaluated. I need to make sure her white count is still low. If it's the same picture, I want to bring her home again.  They were right, she's better here.  My plans, of course mean very little.  Hopefully, we should be through the worst of it

I want to handle a little virus at home like everyone else does.  I'm just so scared it's something else.  My mind races out of control, which is not at all where God wants us to be. 

I really struggle, not with trusting God's plan for our lives or with having faith in who He is, but in knowing that He allows us to go through so much sometimes.  I know that even with a little virus, there is purpose and God notices and cares about us.  But as her mom, I wonder how much her little body can take.  I wonder how much I can stand by and watch.

I asked Jeff if he thought this was really a virus we're dealing with...gut feeling.  What do you think?  His answer was what I'm most afraid of, but didn't even realize.  He said it really didn't matter, he just hopes fevers aren't a part of our new Abby.  Is she going to pick up every single thing now?  Is she going to struggle to fight them off? 

As always, I'm hoping to have a better day today.

waiting.

Waiting has never been my favorite thing to do.  Patience is something I've learned; but I've never learned to love it. 

Before bed last night Abby's temperature jumped up to 104.  That's always scary, but what was really scary was her hands and feet turned to ice.  Her body and head were burning up, but her limbs were cold and dusky.  I called my aunt, who is a nurse and asked her what to do.  I really wanted to take Abby back to the hospital, but I think I knew she could stay home.  She said to try Motrin and if it didn't work to take her back.  Motrin brought it down to 102, but more importantly her limbs warmed back up. 

She stayed between 101 and 102 all night.  She's still looks awful and skinny.  She's lost weight, although we're trying to run her feedings at least some today. 

The initial blood culture report was negative, so she'll stay home for now.  All we can do is wait for her to get better or get worse.  We are still thinking that this is a virus.  It's just a nasty, mean virus.  Our biggest concern is that we're missing something.  I guess time will tell.  If it's a virus, she should begin to look a little better today.  I don't expect her fever to spike again because it's been 72 hours now and most virus's start to burn out after 3 days.  If she continues to run the high fevers we'll make a decision then. 

Jeff left today and one of my caregivers is out sick with a bad tooth.  Hopefully everything will settle down, since I'm down helpers.  I'll miss my goofy husband making me laugh because every time I tell him Abby's temperature, he comes up with a radio station somewhere in the country that correlates to the number.  Right now Abby's temp is 101.7 (he's gone, so I'm not sure where that would be).  She hasn't had any Motrin yet , so maybe she's on the way to getting better. 

Today I'll wait.  Yuck.:(  Wait for answers, wait for better, wait for our own messed up normal.  I don't like it, but I'm waiting. 

Scary

Sweet Abby Grace has not had a good day.  Her fever won't stay down.  She looks worse than I've ever seen her look.  She simply has no color.  She's so pale that when she falls asleep, Jeff and I have to make sure she's still breathing. 

Her color is freaking me out!

We are home with her for now.  Her blood work didn't look bad which is so weird.  Her blood work is off every week when she usually looks okay.  Now, most things look normal, but she looks awful.  Her fever breaks for a bit, but goes right back up.  Her O2 sats are good, which is good.  Her heart rate was up pretty high, but that's not too abnormal considering her temperature.  She hasn't tolerated feedings for the last 24 hours. They gave her extra IV fluids in the ER.  

They let us bring her home and for the first time in my life, I was scared to take her.  I cried leaving the hospital.  I know they're right.  They weren't going to do anything for her there that we aren't doing here.  Control the fever and run IV fluids.  Her Dr. didn't want to start antibiotics until he sees the blood cultures.  He's not convinced it was a contaminant two weeks ago.  Because this started 10 days after she stopped antibiotics before, it's possible that we just stopped something brewing and didn't actually kill it.  We are just not sure.  If she has a blood infection, I can't imagine her white count being normal.  If she has a virus, it's awful. 

Jeff has decided to stay an extra day because Abby looks so scary to us.  It's awful being so afraid for her.  It was one thing to not want to be in the hospital and deal with that.  It's another thing entirely to be so worried about her.  We just wonder how much her little body can take.  

I'm praying tomorrow comes with answers and Abby does well through the night.


***Fever's up to 103.9, giving motrin and really praying she's alright tonight***

And again....

Stubborn fever.  Poor Abby. 

I would probably take her to the hospital to get checked out now even if she didn't have all the other issues she has.  Her fever went up and down through the night.  Down a little with medicines and then right back up again. 

She woke up 102.2. 

I didn't sleep much, but I feel more peaceful about taking her in.  She needs to go and get checked out. 

Hopefully we'll get to come back home today, but I'm not naive enough to think that would really happen (darn it).  I kind of miss the days when I believed that she could get sick like other kids do. 

So now we'll see what another day brings.  This is still the day the Lord has made and I will do everything I can to rejoice and be glad in it.

Desperate

That's how I feel.  Sad, weighed down, desperate for good news. 

People ask me about Abby all the time and with each response I long to say "she's great"!  I would even take "she's recovering".  The truth is, I just don't know how she is. 

She has a fever again.  102.9.  I called the Dr. and told him that I didn't want to bring her in again for powerful antibiotics that she doesn't need, especially because of her white blood cell count last time and the reaction to the Vancomycin.  The danger, of course, is the possibility that she really needs powerful antibiotics and she's home with us. 

It's been exactly two weeks since we were in this exact same place.  The Dr. said we could try to bring the fever down at home and bring her in if she gets worse.  It's been 8 hours and it hasn't dropped to less than 101.9.  We'll see how tonight goes.  I would not be at all surprised if tomorrow greets me with a trip to the hospital.  Our bags are packed and waiting by the front door, a drill we have sadly become accustomed to. 

She looks so bad.  She's pale and feverish.  I just want it to stop.  I want to stop worrying about her. 

Jeff has been here since Wednesday and we have all relaxed a little.  It's the longest time we've had together in our own home for more than a year.  It's been so nice, but always lurking is the feeling that we're stealing time. 

He leaves tomorrow and I will have to handle all of this. 

There are really no words to express how desperately I do not want to do this again.  I am so tired of the hospital.  More than actually being there is the constant threat of being there.  Everyday she stays home is a day we've worked hard to keep her here, and God in His mercy has allowed it.  I haven't started a single day in almost a year that hasn't included some sort of mental planning for the possibility of Emily or Abby being in the hospital. 

I'm just praying tonight.  Praying God would show me whatever it is He's trying to teach me in this trial.  Praying for wisdom to know when to take her to the hospital and when to stay home; praying for this desperate dread I feel to somehow ease a bit.