On Her Way Back

Over the last 36 hours or so our sweet Ashley has shown her daddy and I that she is on her way back to us. Her sweet smile has returned and the twinkle in her eye is shining. She looks a little rough, but to see her spirit and her personality begin to emerge from underneath all that she has been through over the last 3 weeks has done amazing things for our hearts.

Her last 2 steri strips over the incision on her neck finally came off last night and so tonight she will be receiving her first shampoo in 3 weeks! Trust me, I KNOW how gross that sounds, but it is what it is. I was given strict instructions to not allow that incision to get wet at all and so shampooing was out of the question. With cheeks as round as Ash's its impossible to keep her neck clean and dry while washing her hair. I'm so excited to have the opportunity to make her smell nice and look nice again.

Dave and I have had so much fun playing with her the last couple of days. She is signing and communicating more and she is cracking us up with the things she has to "say". I think I've smiled more in the last day or so than I have in over 3 weeks. When Ash is not well and not happy it is so very hard for us to keep our spirits up. I'm just so thankful.

Tomorrow morning she and I will be leaving the house at 4am to make the drive to Shreveport. I would like to say I'm not nervous. I would like to say "this is just another line placement". The truth is that after living with what happened to her from the last "line placement" attempt I can no longer just assume things will go well. I hope and I pray that they do, but until I see that tiny girl open her eyes with a non -infected, fully functioning line in place I will not breathe easy again. The plan has changed and even though I don't like it much, I don't get to choose the way things will be done. They will be removing the infected line in the OR tomorrow and placing the new one at the same time. We all know the risks of the new line becoming infected are high, but this is what the surgeons would like to do and its their OR I'm working with. My prayer is that the last 10 days of anti biotic treatment have somehow cleared the current line and that no bacteria will break off and travel her system in search of the newly placed line. My other concern is the area this line is being placed. We essentially have no other options, but the likely hood of keeping it dry from her ostomy and her g-tube is almost impossible.

On top of being concerned over her line placement, we are just overall a little sad to know that she will once again be in pain and that her spirit will recede behind the pain until she is feeling well again. This is heartbreaking because we have all missed her silliness so much and having it back for such a short time just seems so unfair.

I have managed to get her tube feedings up to 15ccs an hour. I know it doesn't sound like much, but from 3 to 15 is really a lot of progress. At this point we are thankful for each and every cc of formula that is being pumped into her transplanted bowel.

Still we find ourselves without Internet and phone service in our little yellow house and have decided to forget the hassle of trying to have it re-established until our move at the end of the month(if you need to reach me my cell phone is probably the best way to do that). That means that our updates only come every couple of days as sneaking away to the office is proving difficult for me. I wish Ash was well enough to just jump and run with me, but she is not and without help to watch her then I have to wait until her daddy is not working. She is still struggling with lots of respiratory junk and vomiting, but as you can see from these photos she's got a smile on her face and in her eyes(just ignore all the ugliness on her neck. I'm trying to). I'll take that over the blank stare we've had the last month any day.


We ran away in the RV for the last couple of days and had so much fun just hanging out with our kids. Ash was feeling better and we needed a break from all that has been going on in our piece of the world. We're home now and will be all week. The packing is well under way and seeing all of those boxes scattered around our home is both sad and exciting at the same time. Life is so full and so busy right now We are surely blessed. Thank you so much for your words, your prayers, and your time spent here with us. You are loved and appreciated. Hope you have a great week. Trish

To Clear it all up

Many of you have asked the same questions lately so I thought I might give the answers to them in case you missed them the last week or so.

Is Ash scheduled for another line?

Yes. She will be going in Monday, June 1st at 5:30am. They will be attempting to place a more permanent central line into her left femoral vein and tunneling it up to come out somewhere to the left of her g-tube(feeding tube). I can't even imagine how sore her side will become from all the dressing changes in such a sensitive area. The surgeon's goal is to stay out of her breast tissue but to locate it just below it and still above the g-tube. These are the plans, but we all know that most anything can happen once she's back there.

Has her neck healed yet?

It looks like most of the incision is healing nicely. It is about 2 1/2 inches across sitting right under her jaw line. She still has a few steri-strips in place, but from what I can see it is healing. She does have a stitch coming out of one end that will have to be removed. I look at it and still can't believe it happened.

Did our little yellow house sell?

Yes. I mean, there was an offer made and accepted. I suppose its not technically sold until the closing, but it was gone within the first 2 hours on the market. As sad as I am about losing it, I am so thankful it went quickly. The idea of having to move Ash out of the house each time it was being shown was so frightening to me. The way things turned out she was in the hospital the day it went on the market and then it was gone. It was such a blessing it all worked out that way. As sick as she is right now keeping it up for showings and being on "call" to leave with her would have been impossible. Dave and I really believe God worked it all out for us.

Have we found a home?

Yes. Our offer was made the same day and was accepted without a counter back and forth. This too was such a blessing. Our space will have doubled. The kids will have plenty of room to run around with their friends and it even has an in ground pool for them to enjoy. They are thrilled about this. Our plan is to have it converted over to salt water as soon as the papers are signed. Its much better on skin, on hair, and on over all health. Ash will have a very nice sized therapy/class/ play room. Blake will still have a game room so that he can continue battling back and forth with his dad for the title of the ultimate ping pong champion. Seriously, the competition is getting out of control, but its probably one of the best purchases we have ever made. I would highly recommend a ping pong table for any one who wants to spend more quality family time together. We talk, laugh hysterically, and play with our kids and there is nothing that can beat a night like that! Basically all of our desires were met. God has truly blessed us. There is some work to be done but it will all be worth it.


When are we moving?

Closing is set for June 30th.


What school is Blake going to next year?

Pine Tree. It was his hearts desire to attend school with his best friends and it is our pleasure to give him the opportunity. Its a privilege. The kids earn the right to be schooled outside of our home. If they don't keep up their grades, maintain Godly character, and continue striving to be the best young people they can be then I have NO problem teaching them around our dining room table. Its just the way it works at our house. Allison will stay at Christian Heritage. I hope she'll be there until graduation, but we'll see.

Do we have any big plans for our summer?

NO. I have learned that planning anything usually leads to disappointment. I'm trying to just go with the flow and enjoy our days at home together. The kids each have a church camp their attending. Blake has 3 state tournaments and 1 national tournament to play. Other than those things on the calendar its pretty much open. We usually like to plan some type of vacation for the family, but to be honest Ash is just too sick right now to even think about it. It will probably happen spur of the moment and more than likely won't be anywhere very far from home. Just feel the need at this moment to keep her close to home.

I hope I answered them all. That's all I can think of right now. Even among the hard times concerning Ashley Kate's health we are feeling very blessed. I know God is taking care of so many of the details in our lives. I really believe He is. I"m looking forward to getting her well again. She hasn't been in therapy or in school for 3 weeks now and we will find ourselves starting over yet again with her. To be honest, I'm just thankful she's here with us so that we can start over again. I'm convinced that if we can ever find a balance to her health and give her a few good months or even a year of being well that she would find the strength to do amazing things. I'm still hopeful. I suppose I will always be.

Have a great evening. Trish

A little lighter

This afternoon we got word from Omaha that Ashley's biopsies were clear of acute or ongoing rejection. Instantly lighter. There is no better way to describe it. Just when I felt as though the burden we've been carrying was about to crush me He lightened it a little. Perfect timing.

Lots of things were seen on the biopsies. There are lots of things to be discussed this week. Some changes may be headed our way, but "nothing urgent or immediate needs to take place at this time." Never have we EVER heard those words come from our transplant team after a biopsy. OH, praise God! It felt so good to hear those words. The team is meeting on Friday and will be going over different options for Ash. Mainly the drug Rapamune will be talked about. Do we keep it on board to protect her organ along with her Prograf and Prednisone or can it be eliminated at this time relieving her of the many side effects she is struggling with. Their going to put their minds together and form a decision and let us know. Basically this regime of medications has kept Ash from slipping back into rejection, but it has also kept her very weak, very susceptible, and very ill for the better part of the last 8months. Her quality of life has been severely compromised. So what do we do? Do you protect the grafts at all costs or do you take the risk and restore to our baby her joy, her sparkle, her quality of life? No one ever promised us this transplant life would be easy. I distinctly remember them telling us the exact opposite. It is not easy. Some do fabulous, so struggle for years, and some don't survive. Its a not a life I could ever recommend for another, but I do know in my heart we would do it again. For Ash we would stop at nothing to give her a chance to grow up and be happy. We just have to find our way back there again.

Ash has not been well again today. My car is completely packed with 3 bags for Ashley Kate and 3 bags for myself. I just knew we would be headed somewhere today. We saw her doctor this morning and he stated that nothing more could be done for her at this time. She either has to take a turn for the worse(which we do not want to happen) or eventually start getting better. The doctors did not want her admitted into the hospital because she catches everything in there. They decided they could do nothing more than what they are having us do in our home. IV antibiotics, IV fluids, and trying to make her comfortable. Wait it out and see which way she goes. So that is what we are doing tonight. She began spiking fevers this morning. How she is doing that with all of the antibiotics on board none of us know. We drew new cultures this morning and are just waiting. She's pretty miserable tonight and so it will be another night of sitting up with her, willing her to get well, praying for her to find sleep, and running meds and fluids. Around 4 this morning I couldn't do it by myself anymore. I was so tired I couldn't get one of her pumps to stop alarming and I finally woke Dave and asked for some help. I sat there and cried as he switched out the tubing and got the thing to work again. Why I couldn't figure it out on my own is beyond me. I just think I had run out of ideas,out of energy, and needed a few minutes of rest.

In between the meds changes and fluid bolus' I am attempting to pack. I think I finished packing 3 or maybe 4 boxes at the very most today. Its going to take a while at this rate so I'm thinking how grateful I am that our closing day doesn't come until the end of June. It gives me about 4 weeks or so to get this all done. Then the fun will really begin. The first thing we have to do in our new home is lay floors. Before Ash can live there we have to get the floors down. Just the thought of all of those rooms is overwhelming to me.

So all in all my burden feels lighter tonight. Its still there and I really wish I could figure out that whole lay your burden down at the foot of the cross thing but I haven't. Even after I pray about all of this I feel it weighing me down. Its always there. The most wonderful part of hearing that she was not in rejection was knowing that I don't have to leave Blake and Allie this summer. It feels so good to know that we should be here with them. All 5 of us together taking care of our pickle. Yes, I'm feeling much lighter tonight. Thank you for your sincere prayers and encouraging words. Some days my heart just hurts and there is no getting around it. Goodnight my friends. Trish

Pushed to the Back

We've been home since Saturday afternoon and Ash has been on this course of treatment for her blood infection since Wednesday or was it Thursday that we went back to the PICU? I'm so tired I can't really keep the days of this past few weeks straight. Anyway, I had really hoped to see some improvement in her by now. Usually after 48 hours or so she begins to start feeling better and starts looking more like herself. This has not been the case this time. The only improvement in her condition has been the absence of fevers. I'm not convinced that the leaving of this infected line in place was the best idea, although the physician did speak with the head of transplant surgery(also known as the "transplant god" out in Omaha) and told me that everyone was on board with the plan. I just think that she's not bouncing back because the line is still infected and still in place. I may be way off base, but something is different with her this time. In addition to the infection she is trying to heal from not only the incision in her neck, but also the extensive bruising she has all over her neck, shoulders, arms, hands, wrists, ankles, and feet. She truly is black and blue all over. The only sign she has given me for the past 4 or 5 days is "hurt". She is really hurting, and my heart is really breaking for. She's not smiling, not communicating much. Every once in a while she lifts her tiny hands up in the air and motions for me to pick her up and hold her. Other than those two things, she's pretty much "silent". This too is breaking my heart.

Ash picked up a rather nasty respiratory cough this last admission. I'm assuming it has come from the multiple intubations. It's pretty bad. She coughs all night and all day unable to truly rest. The coughing only makes her vomiting worse. Again, she is sleeping upright in her car seat next to my side of the bed.

We've got to hold on for 6 more days until we take her back in for yet another intubation and more invasive procedures. Then if she has clear cultures we will take her back to the OR for the 4th time in 3 weeks in an attempt to give us some access so that we might put her back on full strength TPN. Her tube feedings remain at only 5ccs an hour and the goal of 80ccs seems so very far away. Our hearts are more discouraged then they have been in a very, very long time.

None of us speak much about what we fear is happening with our Ashley. We try not to talk about the "constant" infections(3 in 8weeks time) from her leaking gut. We do not mention the "O" word or the "R" word. Still this afternoon I found myself helping Blake pack up his closet and falling into conversation about how very sick his baby sister truly is. It was completely accidental, but I'm sure needed to be discussed for some reason. At the end of this conversation my son shared this, "I just keep it pushed to the back. I try not to think of it and don't want to really know it even though I do. I think its easier if I just keep pushing it to the back of my head." Then he left his room and I found him cuddled up next to her on my bed singing the theme from Wonder Pets for her. There were tears in his eyes as he reached out to brush his fingers across her hand.

This is hard. It really is very, very hard on all of us right now, but especially on our sweet Ashley. She has really no strength, no spunk, no desire to play or even to sit up for more than a few moments at a time. My heart is breaking over her broken body, and stability seems almost impossible. Its just an impossible dream that is dangling itself before our eyes, but always out of our reach. Dave rocked her this morning and stated, "Why? Why does her life have to be so hard!" I had no answer and all I could do was walk away.

The last thing I want to do is take her back into the hospital. I just want to give her all the things that I can't. Health. Strength. Speech. Mobility. Instead I continue to give her my love and my heart. I have nothing else to give.

That last sentence pretty much sums me up tonight. I have nothing else to give. Nothing. I'm exhausted from the constant IV schedule she's on. I'm exhausted from the inability to sleep for fear of something happening to her while I do. I'm exhausted from worry of where she and I are headed. I haven't been at this place for a very long time and the attempt to keep myself out of it is exhausting me.

Still I look to left and I see His gift to me. To all of us. Wrapped so tightly in her quilt, strapped safely into her car seat, and looking back up to me to tell me that she's hurting. I love this child more than anything in this world. There is nothing I would not give to make life different for her. If I could ask you to do one thing for Ash or for me it would be this. Never take for granted the health of your children. Never forget that their lives are a gift. Never fail to thank the Father for the peace that comes in not having to fear for their every breath. I just never knew how painful life could be until I loved my Ashley. I never, ever knew. God, forgive me for not being aware of the burden that other parents have carried long before I picked mine up. Forgive me, and please show your mercy on my baby. Thank you for making her mine. Thank you forever. I would want it no other way.

WE'RE OUT OF HERE!!!

Enjoy your holiday weekend, I know we will.

Laid Out

Late this afternoon Ash's doctor laid out a plan and goals for the next 10 days. So here goes:

If Ashley's electrolytes will balance out overnight with the extra potassium boluses' and such then we will be discharged in the morning.

We will continue infusing her antibiotics over the next 7-10 days as we attempt to clear her line and her blood stream of the bacteria that is growing there.

At the end of those 10 days we will be admitted back into the PICU.

Then they will put Ash to sleep using this "temporary" central line that was tunneled through her neck last week. While under anesthesia they will attempt to place peripheral IVs in both of her arms or hands or wrists. Basically where ever they can find a vein. Once those are in place they will pull this line, draw blood cultures and bring her back to the PICU.

We will sit her for the next 36 hours and hope that the cultures do not grow anything back.

If they are clear at the end of the 36 hours they will take her back to the OR and place a Broviac central line into her left femoral vein and tunnel it up toward her rib cage.

During this time Ash will basically be on TPN and lipids along with IV fluids. Our hope would be to advance feedings to somewhere between 6-8ccs an hour to assist her bowel in healing.

For the next 10 days we need for these things to happen:

1. Remain fever free. She's been fever free for a little over 24 hours.

2. Line not to collapse forcing us into the OR before her blood stream is clear of the bacteria. If they were to take her now the new line would be infected in a matter of hours.

3. Her output to drastically slow down allowing us to keep up with her fluids.

4. Her electrolyte and fluid balance to remain within the normal ranges.

This is actually a very "tall" list of things to accomplish. If at any point this list becomes compromised we will be back in the hospital to "fix" whatever went wrong.

The slides arrived in Omaha today. We've gotten no word on pathology yet. The findings could change any and all of this list of goals. Currently the team in Omaha is on board with the plan here in Louisiana.

I can't wait to have this arterial line removed from her ankle. It is causing her a lot of pain although it is serving its purpose. They've drawn blood effortlessly from it over 10 times already. Her neck is healing. The steri strips are starting to pull away from the incision. It is really bruised and still a little swollen, but once those strips come off then her hair can be shampooed and I can begin cleaning her up a little bit.

I can't wait to get her back home. I'm so hoping for it to happen tomorrow. We had some offers submitted on the house today. Our realtor is looking them over and deciding which one would be best for us to accept. We are still waiting on a decision about the house we have made an offer on. The owner lives in Florida and its taking a little bit to get it all worked out. Anyway, our days are numbered in our little house and I just want to get Ash back there so we can enjoy them before it sells or before we are told we need to be back in Nebraska.

So Weird

Allie was definitely right. This whole thing just feels weird. Here I sit an hour from our home and at this very moment( and from the sounds of it throughout the entire weekend) strangers are walking through what has become a very precious place to us. It is just so weird!

On top of the stress of not being there this week to clean it the way I would have liked, to make sure all the rooms were smelling delicious, and that each book, toy, and item were put in its place, people are actually deciding if it in fact is right for them and their families. How do you guys do this? I mean, I know lots of you who have sold your houses and moved on, but I'm really wondering how do you get through this process.

You see, what might not be "right" for someone else has become so treasured to me. I mean I have always loved being in our home, but since Ashley's birth it has become a treasure. Something I long for, dream about, and enjoy with every part of me. This is the only home she's ever known. When we pull up in the driveway and her eyes see that little yellow house she KNOWS she's safe. She KNOWS its all ok again. I KNOW she's survived yet again and has made it back to where she belongs. What memories we have made in this place!

People are stepping into her nursery this very day. Peeking into what is her speciall place. Walking across those floors that I dreamt of hearing her feet run across. Probably wondering why in the world we have an entire closet, floor to ceiling, organized with medical supplies, equipment, medications, feeding pumps, IV poles and supplies, etc, etc. I wonder if they can tell how very special our little one is just by looking into that closet? I wonder if they can imagine how talented Allison Brooke is just by looking at all the canvas' she's painted and placed around her room? Can they see that my son loves God, loves his family, and loves playing baseball by peeking into his space? I just wonder if they have figured out how very much we love the Caribbean by walking into our kitchen? They'll either LOVE it or HATE. That's for sure! Each wall is a different color. Drift wood adorns the walls with our favorite island names hand painted across each piece. Allison's palm tree paintings sit on the shelves of the bakers rack. A copy of her "Waves of Grace" resides there too. Right next to the tin rooster that just had to come home with me to fill that spot. The colors are loud, so fun, and just plain crazy! Did I ever share with you that we have a red wall, a purple wall, a green wall, a bright yellow wall, and orange wall all in the same room? The beams coordinate as do the cabinets and dishes. Its a crazy space that makes you want to dance as you listen to the island music Dave plays each time we prepare a meal or grill on the deck.

I really love that house! I love our home, and it just feels weird to know that I have opened it up to strangers and allowed them to come on in. I'm just going to sit here and pretend that their old friends who stopped by for a little visit. That is already making me feel a little better.

In and Out

Its been a really, really long 8 weeks for us. In and out and in and out and in and out, etc., etc., etc. I never dreamed life would be like this for our girl. Never, ever did I imagine she would be spending her life in and out of hospitals. I just didn't. I find it more and more difficult to hold on to the dreams we dream for our Ashley. I wonder if the day will ever come where our little girl is allowed to be just exactly that...a little girl.

The strength this child holds in her little finger far outweighs the strength I possess in my entire being. She is the most amazing person I have ever known, ever loved, and have ever had the privilege of holding tightly to. I look into her eyes, those twinkly eyes that I love so very much, and I am inspired to keep believing, keep trusting, and keep holding on to my faith. The faith that assures me there is a plan and that He is not and has not ever been caught off guard by one single moment, event, or twist and turn of her life. If I don't hold on tightly to that then I have nothing because I don't get this. I don't understand it. I don't like it, and I don't know how to pretend that her pain and her struggle is good, or ok, or a "blessing" in our lives. It isn't. Its not good. Its not ok. Its not blessing us or her or anyone as far as I can see. Then again its not my eyes that can truly see. Its His.

I know "all things work together for good for those who love Him". I believe it somewhere deep inside of me. Some days its just really, really hard to pull from that place and keep telling myself that its true.

Ashley Kate is currently resting with the help of a double dose of Morphine. Until it kicked in she was screaming silently with no voice because she was hoarse from all of the screaming. Tears rolled down those rosy cheeks and her tiny hands told on all those who had hurt her and what they had done. She told her mommy on them and her mommy could do nothing about it. "Hurt, cry, mama". "Hurt, cry, hold me." "Hurt, cry, sad." Over and over and over again. In those moments I feel as though my heart can not bare it for one moment more and then I look at that face and see that I am NOT the one who is having to bare it. Its her. My tiny girl. This one who lights up our home. The one who has taught us how to live every single moment of this life to the fullest. The one who changed me. The one who stole my heart from the moment I heard of her existence. To be honest she had stolen my heart even years before that. Oh, my sweet girl!

The art line was finally placed into the inside of her right ankle. After 6 attempt into her wrists with physicians working on each side. They couldn't stick her wrists any more and went to her feet. I have no words to describe to you the amount of hurt she is in. Her bowel was scoped and the biopsies should be on their way to Nebraska. I am holding onto a small glimmer of hope that the photos I saw of the inside of her bowel this time looked better than the last set. The thing that does concern me is the smooth appearance of the walls of the inside. This could suggest to me that they are too smooth. No villi or mucosa present? It is a possibility. The encouraging part is that it is not angry, ulcerated, or bleeding. It could really go either way. As always, we do not want to receive a call from Omaha. No news will be considered good news.

The plan from here, without a call from Omaha coming in, is to continue treating Ashley for 7 to 10 days for the bacteria that is in her blood stream. It is yet again a different type than the last two were. The doctor's here in Shreveport would like to get her fluids and electrolytes balanced and then send her home to finish up the course. If we can accomplish this she may be discharged Saturday or Sunday. Then at the completion of the course they will schedule surgery yet again to place a central line in her left femoral vein so that she may receive TPN nutrition as she works her way back toward tube feedings. After testing positive 3 times in 8 weeks for a line infection I'm not near as confident as I have been her whole life about staying infection free. I think our luck has run out and her body has caught up with us. Her bowel walls are leaky and she is very susceptible to becoming septic yet again if it doesn't hurry up and begin to heal.

Dave will be joining us here in a few hours. He is currently at Blake's awards ceremony. Somehow, one of us will be in Tyler with Allison this weekend as she plays in a big soccer tournament(if the call doesn't come in). Blake has the weekend off. Tomorrow is the last day of school and will be followed up with parties for both of the kids classes. This will be Blake's last chance to hang out with the friends he has made at CHS because he will not be returning there in the fall. I really wanted to be there to capture lots of memories on film, but it won't be possible. Allie will return to CHS next fall. They are both very excited about tomorrow and about summer vacation beginning. I'm hoping with all that I have that Ashley Kate and I will be around to enjoy it with them. Allie just called and told me how "weird" it is to drive up to our house and be locked out of it and to see a for sale sign in the yard. "Its just too weird, mom." Yes, I think that it will feel really "weird" to me as well if Ash and I get the chance to drive up to it also. Life is changing for our family. Big things are happening. Some good and some not so good. I guess that's just the way it goes.

Positive

Gram positive cocci. It grew out in her peripheral blood culture that was drawn yesterday. Identification and sensitivity are still unknown, but she is currently being covered for gram positive bacterias with Vancomycin.

What does all this mean? I have no idea. She's never had a gram positive before(at least one that I can remember. In those early post transplant ICU days she had lots of stuff that just kind of became a blur of bad news). How long until she starts feeling better? I have no idea. How long until the fevers stop spiking? I have no idea. How long until Ash is out of the hospital? I have no idea.

The whole bacterial infection, bacterimia, septic, sepsis, whatever you want to label it(they all mean the same thing) is getting old. This will be her third round of it in 8weeks.

Did this come from her line? Don't know. Did it come from the OR last week? Don't know. Did it come from her visits to the dentist's office? The eye doctor? Don't know. Did it come from a pneumonia or something? Don't know. The only thing I do know is that her immune system is compromised intentionally to keep her organs safe and she's likely to get sick from absolutely anything that she comes in contact with. Yep, she's proving that point quite well this year. She's still feeling awful and she's set to leave for the OR close to 12:30 with this fever. They will draw more cultures once she is put to sleep. Thank you God for compassionate physicians who realize when a little girl has endured too much. Thank you for their willingness to make this as easy as possible on her. Thank you.

Biopsy. Scope. Arterial line placement. Lab draws. Cultures drawn. That is what I think is going to happen back there. Then again, I would have never expected her to come out with a 2 inch incision across her neck just last week. I can't be for sure what is going to take place until I am allowed to see her again. Your prayers are appreciated. Trish

Spiking

Ash continues to spike fevers. Its been over 24 hours of this off and on again fever. Late in the day she started coughing continuously. Then her nose began running. It lasted most of the night. Her lungs sound completely clear and her chest x-ray is too. Her oxygen sats are dropping into the low 90's and no one is very happy about it. When she's sleeping they've been as low as 85. Currently we can't find a reason for this change.

As far as I know the plan is still in place to take her back to the OR for a bowel biopsy. Since her fevers haven't ceased she will not get a central line at this time. My suspicion is that we need to pull out this current one because it is probably the cause of the fever, but they aren't willing to do this since she has no access. We will continue to treat the unknown with antibiotic coverage even though we don't know if it is helping or hurting. They will be placing the art line so that we may have a way to draw labs without constantly sticking her. Like I said, this is what I think is still going to happen. Its not ideal to put her to sleep with a fever, but the biopsy can't wait.

As it stands Ashley will still have to have a line placed in femoral vein which will require yet another slot in the OR once she has been fever free for 48 hours.

In the early morning hours Dave and laid still and listened to her coughing both secretly hoping this might be the cause of the heavy stool output. If it were some type of viral something that included fevers, vomiting, coughing, and runny nose that would almost be considered a blessing for us at this point. Fever, coughing and runny nose are NOT symptoms of rejection. Vomiting and excessive stool output are. How sad it truly is to be hoping and praying that your baby is sick, but not really sick. I'll never understand why her life must be this way.

We had hoped that her fevers would cease and that she might perk up a little bit so that after the biopsy was finished we might have the opportunity to take her home for a few days. In our life a few days is such a gift. I watched her big brother fall apart last night. As I stepped into his bedroom to apologize for snapping at him and to ask his forgiveness for it the tears were slipping down his cheeks. He was trying to look down and appear to be concentrating on making his bed, but I knew he was crying. I asked if he were angry with me for responding to his messy bedroom the way that I did and he shook his head no. The tears kept falling. I asked lots of silly questions trying to get to the bottom of it while making him laugh. It wasn't working. I finally asked what I knew was the answer to all of our broken hearts. "Are you upset because your sister is sick?" Flood gates. From my 13 year old and his broken heart. "I'm just so sick of her being sick and having to leave. I'm sick of it. Its not fair." What do you say to that? I'm sick of it too. I really am. He's worried about her and worried about us leaving for Omaha. None of this is fair. Not to him, not to Allie, not to Dave, not to me, but especially not to Ashley Kate. We are all needing for her to just have a period of health. Give us 6 months, a year. Anything to allow her body to get a break from being broken and allow her mind to heal, her body to grow, and her strength to return. Anyway, it looks as though even those few days won't be a possibility. More than likely we will have to wait here in the PICU for the biopsy results. Once they are in, and I'm being completely honest with you here, I think we will be boarding a plane and on our way out for the summer.

If this fever would break I'd snatch her up and take her 45 minutes down the road to spend a few days in our little yellow house. They could be the last ones she ever has there. Our house is expected to sell quickly. There are no promises of course, but each day away from it is breaking my heart. I just wanted to enjoy some more time there before moving. At this point Dave is doing his best to keep it cleaned up and ready for showings. On top of working at the office, finishing up the kids last two day of school and all the activities, and coming back and forth to Shreveport to see Ash in case she has to leaves. His job is much harder than mine. He has to keep going, going, going in spite of his broken heart. I just sit her and rock our baby with mine.

A Plan

We are planning to take Ash to the OR mid morning tomorrow. Not for a line placement(because of her fever) but for a biopsy of her bowel. She will still require a central line, buy when she'll get it I have no idea. In addition they will place an arterial line in her wrist to assure that we have access for blood draws. No one wants to attempt drawing from her again. We will wait on all lab work until she is fast asleep and is unaware of what is being done. Just giving her little veins a break from all the searching and attempts.

The biopsies will be sent overnight to our team in Nebraska and based on the finding we will make a decision as to what direction she and I will be headed. Still we are all hoping and praying for a virus or an infection and no sign of rejection.

Tonight we will rehydrate her, balance her electrolytes, and keep her stable. Her heart rate is down a little, her respiration's are trending down as well, and her oyxgen saturation's are up to 97%. Chest x-rays are all clear. All vital signs tell us that she is stable and not in any immediate danger giving us a little bit of time over then next couple of days to make the best decisions for our family. If at any moment things change then we will head toward Omaha.

I'm going to try and get home at some point tonight to take care of things at the house, pack a little more effectively, and run a few errands in case we must leave again. I think Dave is making an offer on a house we saw yesterday and ours must be ready for showing tomorrow. I need to get the RV straightened back up(from living in it this week) and get it ready for Allie's tournament also. Wow, I imagine I wont be sleeping much tonight. I won't even make it to Longview until 8or9 once Dave can arrive here to sit with Ash. Then we will switch once I make it back to Shreveport so that he can make it in to the office in the morning. What a crazy time in our lives this is!

It started raining

Ashley Kate and I made our way back to the PICU in Shreveport. She's finally resting after multiple attempts to get blood from her worn out veins. It took a very long time to find anything that was "healthy" enough to attempt to stick.

Around 5am things began to change and I knew by 8am that we would no longer be spending our days at home. A high fever spiked, vomiting began, and a loss of 450ccs in stool all in that 3 hour period told me we may be headed for trouble. I checked her O2 sats (low 90's), her heart rate(high 190's), her respiration's(mid 60's) and then tossed some things in a bag and loaded her up.

We are now settled and waiting for a plan. I know we will be scoping and taking biopsies at some point. I prefer today, but expect tomorrow. Based on those results we will know which direction we are headed. She will also be receiving that femoral line at some point. Currently we are all hoping for a line infection in this temporary line or still clinging to the idea of an unknown virus. Past that those things it all points toward the ugly "R" word. She is stable, very, very tired, but stable.

If she is in the "R" word then most likely it was triggered from the two line infections and bouts with sepsis she has been through in the last couple of months. Anytime her body gets sick it attempts to ramp up her immune system and this in turn places her organs in jeopardy. I hope with all that I have that we are not facing this issue yet again. I just don't know what we will do if we are. I honestly don't. I've never had to spend the summer away from Blake and Allie. It seems were always there during the school year which serves as a great distraction for them both. So many things are planned for them this summer that I can't imagine missing out on it all. Allie's big tournament is this weekend and Blake has a string of State tournaments coming up in June with a National tournament in July. I can't believe this is happening to Ash again. I really can't believe it. There are moments in my day when I want to stomp my feet and scream as loud as I can because I'm just not getting my way(you know if I had my way NONE of this would be happening to Ashley Kate and she would just be a normal, healthy, little girl). Then I realize it's pointless to act like a toddler and pray that somehow in someway my youngest daughter will instead get that very opportunity that I am fighting not indulge in. I would give most anything I have to see her stomp her feet and scream over not getting something she wanted. Yes, I really would. Instead I get to watch her cry crocodile tears from the needles in her arms, sign the words "hurt and cry", and reach out for me to make it all stop.

Oh, sweet girl, just hang on. We are trying so hard to give you that normal life you deserve and to see your days filled with nothing but giggles and play. Just keep being tough. Someday we might get you there. I love you, Ash. I truly do. I'm here with you and I'm not going anywhere. You are not alone. I'm so, so sorry your sick again. So, so sorry.

The sky is falling...

...and I'm searching for an umbrella big enough to shelter us from the storm that's brewing. In our part of the world a large black rain cloud is lurking overhead and I can't help but expect it to begin falling at any moment. I really don't know any other way to describe what is happening other than this. I'm literally waiting for it all to come falling down. I can't shake the tears, the fear that is welling up inside of me, and the ache that it brings to my heart.

I sat this evening rocking our sweet baby in our living room and fought as hard as I possibly could to keep the tears that are raining down inside of my heart from finding their way to my eyes. All I could do was whisper the prayer of my heart over and over again. Please, please, please don't take this all away. I want us to stay.

I've been grumpy, and irritable, and frustrated all day and it stems from the fear that I'm feeling. I know that I can't change what is happening in my Ashley's body, but I wish with all that is in me that I could. I'm just so tired of starting over, of biopsies, of waiting, of rumors of rejection, of it all. I'm tired.

Ashley will be going back to the OR on Thursday instead of Monday. Her transplant surgeons want biopsies "sooner rather than later". This means that we have no scheduled slot in the OR because it is already full. We are basically on "stand by". That means once all other cases and any emergencies have been completed they will take Ashley Kate back. We've had to do this once before and it left Ash and I in day surgery from 8am until 9pm. It was very, very hard on her. I'm so disappointed about this change. Really I am. Allison has an awards ceremony and other activities going on Thursday and Blake has his first Athletic Banquet ever that evening. I will be missing out on both of them. When I begin to feel the disappointment I begin sensing the feeling that I may miss out on a lot more than just Thursday. If all suspicions are correct then Ash and I may be spending our summer in Nebraska away from Blake and Allie.

The deal is that Ash is tolerating NO feedings into her gut. NONE. In less than two weeks she has gone from full feedings to NO feedings and is completely dependant on not only TPN but also lipids. I HATE lipids!!! I am convinced that it was the use of the lipids in her early life that led us to liver failure and then transplant. The lipids are killing our children and very few people want to admit that nasty little fact, but that is a whole other post. Ash continues to stool out at very alarming rates and is requiring around the clock IV support as well as her IV nutrition.

If you stopped by to see her you would have NO idea that our baby is sick. None, other than the IV pole that follows her around. To look at her sweet face and see her smile is so wonderful, but at the same time her daddy and I know that our "normal" life and her literal life hinges on the biopsy results. We hesitate to plan for much of anything at this time. We are just waiting. You know, for the sky to fall.

We are desperately trying to find a house, purchase it and get ours sold before all of this happens. I want to know where we will be living and know that the stress of it all is not laid at Dave's feet just in case we are gone. Stress levels are high in our house as we do our best to keep it all together in front of the older kids and to still try and enjoy each moment we have together. My deepest desire is that she has a virus and that in some type of miracle things would all turn back around very quickly. Unfortunately, I think time on that desire is running out.

I can feel my heart is on the verge of breaking for the millionth time. I wish it wasn't so hard to live this life, but it is. It just is and I'm not good at pretending that all is rosy when in fact its very stormy.

I wish I could keep Ash out of the OR, out of the hospital, and out of "trouble", but unfortunately she has been given a very broken body and no matter how hard I try I can't change that fact. All I can do is love her like no other. I rock her to sleep each night and pray that life will even out for my child, but to be honest I expect that it probably never will. Just being honest.

Trish

So Very Tired

We are home. As is Blake, Allie, and Ashley. At least we are sort of home. We are in our driveway living in our RV for a couple of days. Not a huge deal, just a little exterminating taking place that isn't safe for Ash to breathe(and not good for the rest of us either) so until we are sure its an all clear we are residing in the driveway. Its close enough to home to be considered home for me. I'll take it.

Ash has had a good day. She's been happy and silly. Giggling in the car seat on the drive and enjoying her freedom. Her gut is not tolerating the tiny amount of feeds we have going so I will be cutting that 8ccs back to 5cc over night. So discouraging. I honestly don't even know how to explain it, but I do know that some of you are transplant moms our short gut moms and you understand the dance we can't seem to get to stop. Anyway, I'll take a happy, smiley, little girl any day. Just knowing the relief she must be starting to feel from the pain blesses me immensely.

Tomorrow will be a long day of coordinating plans, talking to doctors, surgeons, transplant teams, and pharmacy. Yes, we will be managing this from home. As long as we possibly can. If at any point Ashley's organs seem to be in danger then you all know the drill. I'll be packing our bags for an extended stay in a little place I don't like to talk about that often. So lets not, ok? I'm pretty sure this is a virus of some type that has her gut sick. We, with the help of our many teams of doctors, will try and ride it out. Ashley is so much happier at home(or in the RV for the time being) than she was at the hospital.

We are all exhausted. Really, really exhausted. Ash is already sleeping soundly on the bed. Dave has some work to complete at the office before the morning and so its going to be a late night for him. I'm currently at the office since we still have no phone or Internet service. Once I finish up here I'm off to bed. I think I could sleep for a full day and not even feel bad about it. I just wanted to let you all know we've made it home. Thank you for your kind words and prayers. I find great comfort in reading your words of encouragement. I'll talk to you when I can run up here and steal a computer from one of the staff for a few moments this week. Take care and God bless. Trish

Hard to Believe

Dave and I find ourselves in some state of disbelief over the events that have taken place the last couple of weeks. Its just really, really hard to believe that we are starting over. Again.

Ashley is feeling much better in regards to her incision. The swelling and bruising are still there, but she is no longer growling and grunting and crying. I am so grateful that she's better.

Basically we are starting back at the beginning and its expected that it will take us months and months to rehab Ash's gut. She will be going back to the OR next Monday(or perhaps sooner if this line collapses on us) to have a line placed in the dreaded femoral vein. We have done everything possible to keep this from taking place, but are now in the position that we have no choice. Ashley will be placed back on TPN and we have to have a line that it can run through. Her current line needs to hold out until next Monday. It is not capable of having TPN run through it.

We have orders to have albumin infused daily. How or where this will take place is some sort of a mystery at this time. We have lots of calls to make and lots of hoops to jump through to make this happen. I'm not sure if you remember the last time we needed this done, but basically its an insurance nightmare and they refuse to allow us to pay for it ourselves because of the costs of it. Approximately $1800.00 per infusion.

For now we are headed home with her. Literally on our way out the door. Our goal is to make it through next week at home in order to get the older kids out of school and give them the opportunity to attend and be a part of all the end of the year events. Then the focus will be full force on rehab for Ashley's sick gut. She is currently on 8ccs of formula an hour with the goal being 80ccs per hour. We have a very, very long way to go.

Still the cause of this nightmare has not been identified. We may never know what has led her back down this path. All we do know is that we are committed to getting her down it once again and moving forward with allowing our daughter to grow up with the best life we can possibly provide for her. Ash deserves nothing less.

Your prayers for us over the next couple of weeks would be so appreciated. Its not only a physical battle that rages inside of Ash's body, but its also a mental battle that is exhausting to us. On top of all that the spiritual battle that ensues is tough as well. Trying to remain strong in our faith and reminding ourselves moment by moment how very much God has indeed blessed us and blessed our Ashley.

Its time to go. Talk to you all as soon as I can. Take care. Trish

Putting it all together

Sweetly Sleeping with toy Lollipop in hand

Around 7pm last night things all began to make a little more sense to us as we figured out just exactly what Ash had gone through in the OR and then put it all together. All I can really say is that it broke our hearts for our sweet girl. She's been through a major surgery which is not at all what we thought would happen to her when sending her back for a line placement.

Ash spent yesterday being miserable. She was in a lot of pain. I knew it was to be expected for her to be fairly uncomfortable with the many attempt made at threading the wire into the veins. We've seen her go through that before, but never had we seen her endure what they call a "cut down". Dave and I were thinking we would find a small, perhaps about an inch long, incision underneath her dressing, but we were SO wrong. Ash just couldn't take it any longer. Her skin was raw and blistered and she was clawing at the incision in her neck and so the nurse and I decided we needed to change her dressing(a day earlier than desired) to see if we could make her more comfortable. The screaming and growling sent Dave from the room. I have never seen Ash grind as hard or bear down and scream that hard in all of her life. Here I was standing above her, pulling the dressing away from the site and trying my best to give her some type of comfort as the tears rolled freely from us both. It was a miserable experience and then I saw why. Her neck, just along the jaw line has been cut about 2 and 1/2 inches across. The incision shocked me and literally took me to knees on the floor beside her bed. The bruising found clearly shows that the two side were held back by some one's hands as the surgeon had to "cut down" through the layers to locate this large collateral vein that was identified on the ultra sound. Ashley's neck is in severe pain from the trauma that she endured. The depth and size of her incision clearly pointed to her blood loss. When I spoke to her surgeon last night he said assured me that yes she had lost a LOT of blood on the table.

Her beloved copy of "Goodnight Moon"

Healing from this incision is going to be difficult because of where it is on her neck. If you haven't noticed(yeah right!) Ashley has what is called "moon face" as a result of the steroid she is forced to have each day. She has a lot of extra "fat" or swelling in her neck and cheeks. Look closely at her pictures and just imagine how painful it would be to have that lifted up daily to have the dressing changed on an incision that is sitting underneath it. Honestly, it is killing me inside to do this to her. I can't even believe the turn of events of the last few days. This was not supposed to be this hard on her and the guilt I feel for agreeing to this is overwhelming. None of us could have imagined how it would turn out. We thought she was "just having a line placed" not like that's not a big deal, but it is something we parents of chronically ill children have sent them for over and over and over again. I guess you might say it becomes routine? Although I've never adjusted to having her taken from me and going to the OR. I don't think you can adjust to that because it feels so "not normal".

The idea of having a medi port placed in her was quickly ruled out by her transplant team. In all reality they call the shots because of their expertise and experience with Ashley. If they say no, then we say no. We have that much trust and respect for them. It's a little disappointing, but I knew that I had never seen it done to the bowel transplant kids in Omaha and I already knew what their answer would be. We had to ask anyway just in case we had the opportunity to make life a little easier on Ashley Kate.

The current plan is to sit still through today and give Ash the support she needs. Blood, albumin, balancing electrolytes, etc. We will begin giving her a "thimble full" of formula. 5ccs an hour to give the gut a trial run and then increase to 10 in the morning. Discharge is being discussed for tomorrow. Then from there I will bring Ashley back over to clinic each and every week to make adjustments for her. Also to keep a close eye on the healing of her wound.

My hope is that her day will be easier than yesterday. Each day the pain should lessen and she should begin to return to feeling more normal. As I look at the bandage on her neck my heart sinks knowing that before this all of her "battle scars" were hidden underneath her clothes giving my heart great comfort in knowing that someday she might have the opportunity to grow up, live a normal life, and have no visible evidence of her fight for it. That opportunity is lost and now she will bare this scar for all to see. I just can't let go of the dream of her growing up to put all this behind her. Kind of silly and naive on my part I suppose, but thats my mommy heart toward this child. I just love her so much and want the absolute best that life can be for her.

Allie has her last soccer game this morning and we have no opportunity to get there for it, but she will be playing as a guest player next weekend in a big tournament so we are all excited about watching her then. Blake is actually playing in Louisiana this weekend and we have no opportunity to make the early game, but perhaps if Ash is doing better this afternoon then as Dave's mom is traveling by toward Blake's tournament we may switch places with her and spend the late afternoon and early evening with Allie as we watch Blake do what he does best. I think grandma would like to spend some time with Ash. All of this hinges on how she's doing of course, but it may happen. We'll just see.

This life we have been given the last 3 and 1/2 years has been filled with some very hard times and some very broken hearts, but more than anything it has been filled with God's mercy and His grace as He placed the very desire of our hearts into my hands that August afternoon. Just the idea of my sweet Ashley that day changed the very core of who I was and formed me into the person I am today. For that day and each and every one I am given with this child I am grateful. More than you will ever, ever know. She is a gift and defines the meaning of it in my life. A beautiful surprise that came so unexpectedly. God is very, very good.

Dropping

We were just alerted to the fact that Ash's hemoglobin has dropped 6 points since she was admitted Wednesday evening. If we had been drawing blood and taking labs I would maybe understand this, but the only blood that has been drawn since then is 2ccs. That is not an explanation for this drop. She's gone from 12.6 to 6.9 in less than 48 hours. Is it even possible that she lost that much blood in the OR yesterday from a line placement? It doesn't make any sense at all. Dave and I are a little nervous and wondering if she's bleeding somewhere internally. If she were I think we would be seeing more problems arising. I think.

It does help explain her higher heart rate, pale skin and blue tinted lips. She will be receiving blood today, and probably albumin, and a lot of other stuff too.

Ash is currently on no feeds and from rounds this morning it sounds as though we will be starting our journey to full feedings and no TPN all over again. Problem being? She doesn't have a line that TPN can go into to. The line that was placed yesterday was only placed in a collateral vein. Its basically a glorified IV that was inserted through the incision in her neck and tunneled into this large collateral vein. It can basically only handle IV fluids. I guess in one way you could say she went through everything she did yesterday for nothing, but none of us had any idea that they would not be able to place a central line because of the state of her veins. We just didn't know that. Even with the ultra sounds that were done we had no idea. We all knew it would be difficult, but not impossible.

How in the world are going to get through this virus or bug or whatever is causing her high stool output? I honestly don't know.

The team here is really encouraging us to consider taking her back to the OR next Wednesday and placing a port in her left femoral vein leading back up toward her hip. This port would be strong enough to run antibiotics through and TPN and IV fluids if they were all need. The biggest problem we are facing is the not knowing. We just don't know if she'll need it. So do we do it just in case or do we wait until she's crashing and we have no immediate access? Everyone, including our surgeon is "just so tired of sticking her". Those are his words not mine, but I agree. The port would require her to be stuck every week, but it would be a for sure stick. No guessing and not multiple attempts.

I just don't know what to do.

One part of me wants to save and protect those femoral veins for the future. What if we lose those during this whole mess and when we need them to save her life we won't have them? Dave and Dr.S said they don't live in the land of "what ifs". Unfortunately, I do. Remember how Dave and I live in different lands? His, the land of rainbows and daisies and mine, the land of reality. How I wish I could move on over to his stretch of land and leave mine behind forever!

What needs to happen for us? She needs to stop stooling out in such high amounts. IF she could stop that, then we wouldn't need IV access to keep her hydrated. This is what NEEDS to happen and then of course for her to "just get well and grow up". Yeah, I think thats what we all want to happen.

There is talk of "topping her off" and allowing us to take her home for a few days giving us time to talk, pray, and make a decision. The surgeon just wanted to share with us that "she is a venous nightmare. When we read her name on the OR list we shake our heads and say "oh, no not again."

Update

Ashley Kate went into the OR a little before 2pm and didn't come out until well after 5pm. She is battered and bruised(seriously she is) and has a very temporary "permanent" central line. Her surgeon met me in the ICU waiting room and as he approached I could tell the news he was going to deliver to me was not good. As if I couldn't tell by the look on his face, he approached me all the while shaking his head no.

We sat and talked. For a while. We are running out of options. He tried more times than I have taken the time to count to place a line in one of her main veins. The interior jugulars or the sub clavians. He was unsuccessful. There is no longer any access in her upper regions for line placement. This is not good news. Everything is scarred down from the multiple lines she has had over her short life. He finally decided to make an incision on her neck and tunneled a catheter down through a large collateral vein into the area he needed to go, but it is not ideal and it will not last. He also attempted to place pic lines in her arms with no luck on either side. In his words, "Her veins are a mess. I shot contrast through them to try and find something and her chest lit up like Medusa". She's in bad shape if she needs this line for any length of time. Our hope is that it will get us through the next couple of weeks and then it can be pulled out and she have no need for one.

We still have the femoral veins that are patent, but not ideal for a toddler with an ostomy bag that is pulled off or leaks almost daily.

"What do we do if she loses all access?" That was my question.

"Your done. If she has no access and she needs access to fight sepsis or rejection or organ failure then your done. Its over." He then walked away, stopped in the doorway and said, "What we need to happen is for her to grow up. Get bigger and stay well for a year or two. Then perhaps with the change in her body size she might have some of those veins open back up. That's what needs to happen for her." Then he left.

I sat there for the next hour trembling. My heart racing. Wondering how to grow up with a bowel transplant and avoid the need for line access. I know in my heart that its impossible. At some point we will be done and we will lose. She will lose. Tears flooded my eyes and fell in my lap. I prayed, pleaded and just cried to God. Without His hand on her life then we will lose and I can't imagine my life going on past that. I NEED Him. I need Him to help us raise our daughter. I want for to grow up. As she came out recovery I decided to wipe away my tears, push all the fear into the deepest corner inside of me that I can possibly find and love her today. For I have been given today with the most beautiful little girl my eyes have ever seen and for this day I am grateful. If and when we get further down this predicted line I will look to Him for the courage and the grace to walk that line and then beg for His mercy to fall on my daughter's life. I'll never stop fighting for her until He reaches down and removes her from my grasp.

As the minutes tick by she swells larger and larger. There is a lot of trauma for her to overcome from what you would expect to be a "simple" line placement. It wasn't so simple. She is already bruising and each time the nurse steps in she comments on how her face, her neck, her eyes, her arms are changing and how quickly it is happening. By morning she won't be recognizable. Tonight I pray for ease of her discomfort and for this stooling out to stop. Like the doctor said, "she needs to get well. And stay that way."

I remember years ago as we sat with our GI doctor and his nurse that had been caring for Ashley and discussed the idea of transplant. His comment rings in my ear on days like today. "Once we pull the trigger it can never be undone. Think about that." We did think long and hard about it and the alternative was never an option for Dave and I. I firmly believed and still do that God had a plan for placing Ashley in our hearts and in our arms. Giving up was never supposed to be a part of that plan. I know that and remind myself of it almost daily.

Your prayers and you support for our sweet Ashley bring such comfort to this momma who loves this little girl with all that I have. Thank you from my heart. Trish

At the End of the Day

At the end of the day this is the image I laid down with. A smile crept across my face and gratitude filled my heart. A perfect ending to a not so perfect day. Nothing else mattered. We survived. She still blows me away with her courage at every single bend in the road. This beautiful child of mine. That last sentence sent goose bumps up and down me. "Child of mine". I've done nothing in my life to deserve such a gift, but I am grateful. Even on the rough days.

My frustrations come from a broken heart. I can do nothing to spare Ashley Kate from the pain that she will and does experience in her life. Through the years I have been able to shield Blake and Allison from most things that would bring hurt to them. For Ash ? I have not been able to do this. Instead I am forced to make the decisions that allow the hurts to be done to her. Its the hardest thing I've ever done. The absolute hardest. Sitting by and watching her experience physical pain and many, many times being one of those who must hold her or pin her down while she endures it is something I wouldn't wish on anyone. My heart breaks again and again.

On top of all the "nonsense" that took place in her life yesterday it was a very emotional day. Her physical therapy session consisted of me sitting on one couch crying my eyes out and asking questions to our therapist that she too had asked herself many, many times in her line of work and hearing that there are no answers to those difficult questions. Sometimes Sue is more than our physical therapist. I thank God for her. She is a blessing in our lives. A friend who allows me to fall apart at the seems while she continues to encourage me along this path with my daughter.

I've spent the last month reading through the gospels and then Acts. I wish I had kept track of the accounts of healings that have taken place just in those 5 books. Each and every time I stumble across another person being told to "arise, to get up, to take up their bed and walk," I get those goose bumps. I wonder to myself "Why Not". If He is the same God today that He was yesterday(and I believe that He IS), then "Why Not?" I read the words recorded about the man who left "walking, and leaping, and praising God" and said out loud to no one that "She could do that". She really could. I would teach her to walk and leap and praise God. With each and every step I would remind her to give Him the glory. I would encourage her to tell her story and to never stop. Still, I'm left in awe of His power, His spoken word, and His mercy on those who had been shown none.

As we begin peering into the world of wheel chairs, accessibility, home modifications, a newly equipped vehicle, lift systems, etc., etc., I find myself praying for it all to change for her before we actually enter it. If it doesn't? Then Ashley Kate will be just fine. She is happy. She has no idea that she is missing out on anything. As I shared with Sue yesterday, "Ash doesn't have a problem with her life, the rest of us are the ones struggling to deal with it."

As a baby and a toddler its been easy to get by without any of this. She's always been so tiny and I have been able to care for her. Still as an almost 4 year old its relatively "easy". I mean lifting the 34lb, long legged, beauty is a little exhausting by the end of a day, but I manage pretty well. Its the future that concerns us. She's only almost 4, but what about 6 and then 8? 10, 12, 14? How will we adapt our home, our vehicles(getting her in and out of car is an exhausting task and becoming more and more difficult), our hearts to all of this, if that is even where she is at that time. God could heal her. I KNOW that He could and she could begin to walk at some point. Either way we as her parents have to prepare. It is our job to take care of her and to give her the absolute best care that we can. With this in mind we peek, we tiptoe, and we begin to make plans to enter this world that is very, very unfamiliar to us.


In order to do all of this moving is necessary. There is no getting around it. On top of Ashley Kate's needs Blake will be changing schools and he would like to attend the school district that most of his friends are in. We are supportive of that. This places a limit on the homes available to us. I know the right one is out there. I just wish I hadn't seen the other one because it would have been just right for us. We have a clear budget in mind and much of that budget is being set aside to make the modifications for Ash's needs to the home we purchase. Again, limiting our field of possibilities. One of our biggest desires is wide doorways, hallways and large open spaces. We plan on fitting Ash with a chair that she can learn to control in the very near future(more than likely by the end of the year) and we are looking for a place where she might have room to experience the feelings of freedom and movement. Currently she stays wherever I place her in the house. (I hope that answers the questions asked about why we consider moving.)

There are big changes in store for our family this summer. Change isn't easy. I like for things to remain steady and constant, but its not always the best way to see growth. Its in the growing where we tend to see God's hand in our lives the most.

My apologies to those who were offended by the photos from last night. To tell you the truth I never know what will trigger an offense and things that I wouldn't think twice about tend to sometimes do just that. I'm sorry you were upset about her dentist pictures. I really didn't intend to be offensive. Ash's story is just that. Ashley's story. I record it for her and for our family and I knew my family would want to see how things went during her appointment. That is the reason behind showing her there and also showing her photographs while in the hospital.

So today's plan? Ultra sound in attempt to locate a good vein for a catheter, stool cultures, and fluid replacements. That's all I know. We do have a slot blocked in the OR, but I have no idea what time it is. Hope your day goes well and that you are blessed beyond what you expected. Take care my friends. Trish

From Bad to Worse...

This day has gone from bad to worse

...with no sign of it getting any better any time soon.

It began with a disastrous visit to the dentist. Honestly, it was a mistake to take her there. They told us to come back around the age of 6 when all of her current teeth begin to fall out or when we can get her vomiting under control. The only "good" thing that happened at this appointment was the sticker with a toothbrush on it they gave to Ash at the end. She really, really liked it. The basically said her teeth have eroded due to medications and vomit. Nothing can be done to help them.



Once we arrived back home she dropped that toothbrush sticker and leaned over to pick it up causing her to fall on her FACE on the wood floors with no ability to break her own fall. She came up off the ground with blood spurting from everywhere. Her lip was split open and her nose busted. Probably the most difficult thing we have been through with her at home. I was so scared! Can you see the bloodied nose and swollen lip? Its kind of hard to tell in the photos, but trust me when I tell you its nasty.


Then came the stool. I'm talking massive amounts of stooling out into her ostomy bag. By 5pm I was 700ccs behind with no way to give the fluid back to her. I knew by morning we would be in big trouble. You can only replace so much enterally. She had to have an IV, but I had no idea where they would be able to place one.


So on to Shreveport we went knowing that she needed some type of a line in place to keep up and to try and figure out where the stooling out is coming from. I'm just guessing a scope will be in our near future if things don't change soon. Currently we are 1200ccs behind.


We sat in the ER for about 4 hours while they tried to figure out what they wanted to do before bringing her up to the PICU. Most of her veins have blown by attempted IV from this past week and she is covered in bruises. They finally found a vein in her foot, but it blew immediately. They gave up down there and sent us up without an IV.




So our little pickle sat and waited knowing all along that they were going to begin trying again. Sometime around 11pm they finally placed an IV and have now started an IV bolus of fluids. I believe she is being scheduled for the OR for tomorrow morning where they will attempt to place another central line until we figure this whole mess out.

This has been one of Ashley Kate's tough days. Her first "normal" kid injury took place. Can you imagine trying to explain that we weren't in the ER for the busted lip and bloody nose. "Just ignore those injuries please we have bigger issues to sort out." I can't imagine what people were thinking when they saw this beautiful baby with her bloodied nose and busted lip. She can't stand up and doesn't even walk! Still she managed a doosy! She's had every vein in her extremities stabbed in the last week and today they re-stabbed a few. Still she cuddled up with her daddy and gave him the best "xmo"(Eskimo) kisses ever with the tears still wet on her cheeks.

To end the day on the right note we received an e-mail letting us know that the house my eye has been on is more than likely not going to happen for us. Another client of our realtor made their offer before we could and I'm not feeling that this it gonna work out. Its pretty much a broken dream and my heart's pretty much not really into this whole house hunting thing. I love my little yellow house, but the problem is that its too little. Too little to adapt for Ash's needs and leaving it is breaking my heart. I know I'm not supposed to get emotional about the process, but its really hard not too. I don't like this game one little bit. I guess I'm just tired and not having that good of a day. I think I'd like to give it up before it really even begins. This is not fun. Not fun leaving behind something you love and not knowing where your headed just knowing that you have to go somewhere. That little e mail was just one more thing that I didn't need to happen today.

Ash is settling down for the night and I'm going to try and join her. Dave's already snuggled in the bed with her, so I'll take the couch. Another trip to the PICU. Life is anything but predictable for us. When I woke this morning I had no idea we'd be sleeping here tonight. A perfectly good day can turn bad in just a matter of minutes. Still I look around and see how blessed we are. Goodnight. Trish

Reflections from a Mom's Heart

With the loss of phone service AND Internet service I have lots and lots of time to devote to preparing the house for listing, enjoying the children, and reflecting on my job as their mom. Its amazing what you can get done when your little laptop is out of service and your phone stops ringing. This afternoon I've stepped out to the office during the lunch hour to "hijack" Dave's personal computer in his office and post a little update.

First and foremost Ash is doing well. Not perfect, but well and for that I am so very grateful. She has been free from our daily episodes(I won't type it out because I believe its the avenue that is causing these things to keep occurring) but the word begins with the letter that comes after "U" and ends with the letter that comes after "S". Is that confusing enough for you? Its been 3 whole days free and 3 whole days with our little one sleeping back in her nursery. Amazing how good it feels to tuck that sweet girl in to her her own bed in her own room surrounded by all things "Ashley". She has continued to enjoy her baths this week and has been fever and symptom free from her bout with sepsis. Again our hearts are very, very grateful.

Mother's Day. What an amazing experience it is to be a mom. Without a doubt the best thing I've ever done. In my younger years never did I imagine myself as a mom. Nor a wife for that matter. I was focused on growing up to do other things, but oh what a gift it has been to see the direction God has taken my life. Not my plan, but His and I have learned how important it is to live according to His plan for my life rather than my own. I would have missed so much.

Marriage was not appealing to me in any way. My experience growing up was not what I would call a good one when watching the marriages in my family play out. I had no desire to be in that type of a "mess" and so motherhood kind of took the same back seat when thinking about what I would do when I grew up. I grew up in a broken home. Not something I speak about very often. My parents split up when I was only 7 years old and I never quite understood what took place. I woke up one morning and my mom was gone and that's all I remember about that time. Shortly after my parents both remarried and once again the examples were nothing that I desired to have in my life. I was raised by my father, whom I love very much, and his wife, my stepmother who proved not to be a very kind person to my siblings and I. I won't go into the details, but I will share that I had no idea what it meant to be a mom. There was no real example lived out in front of me. Since my childhood, God has restored a relationship with my mom and I love her very, very much. She and my father are both good people and I don't judge them in anyway because I didn't have to walk in their shoes. My relationship with both of them is strong and I am grateful.

When I married Dave I knew that I wanted things to be different. Different from every thing I had ever witnessed. I didn't know exactly what I wanted I just knew it couldn't be the same as what I knew marriage to be. God has truly blessed us. Our marriage is as strong as any I know and I trust Dave with my life, my heart, and my dreams. Only God could give such a gift. I believe its our friendship that seals our relationship. We have fun. Lots and lots of fun together. When the children came along again all I knew is what I didn't want motherhood to be. I took what I knew from my childhood and used it to form who I am to Blake, Allison and Ashley. I'm not perfect by any means, and I'm not even sure that I would say I'm good at it, but I will say that it is one of my highest priorities in life and a work in progress. There is no greater job that to be their mom.

What is it that I want for Blake and Allie and Ashley? I want them to feel loved. To know that without a doubt their mom loves them NO MATTER WHAT. I love these young people and I am honored to be their mom. I want to provide for them a safe place. A place to fall when life gets crazy and know that they will not be hurt. I want them to know the pride I feel in being their mom. In all honesty I look at these children and feel such pride in knowing I get to be the one they call their mom. Oh, how good are the gifts the Lord gives to us. Something I never dreamed I would desire, but He knew and He gave abundantly. I want for them to be happy. Undeniably happy. Joy inside of their hearts. Joy of the Lord. I want to walk beside them as they chase their dreams. Large and small. They know that Dave and I support them in all they do and it is not something we take lightly. Their hearts desires will be what shapes them. Dream big and work hard. God will bless their efforts as they seek to give Him glory in all they do. I truly believe this. Laugh. Be silly. Even goofy(like their dad). I want to see them smile each and every day. Life is hard and childhood is short. I want for them to enjoy it. Worry free. There will be plenty of time for them to grow up and take on the "worries of the world." I just don't want for them to have to live like that now.

I am blessed. Blessed by the three that God chose for us. Blessed to hear them call my name. Blessed to be the one they look up to the stands and search for. Blessed to be the driver of the car they climb into each afternoon. Blessed to get to listen to them rattle on and on about the days events. Blessed to kiss them goodnight. Blessed to pray with them. Blessed in those moments when they open up the windows of their hearts and share the burdens that lie within. Blessed.

Motherhood is the best thing that has ever happened in my life. I cherish the time I have with them and as they become young people before my eyes I am reminded how short my time with them is. So for today I am concentrating on who they are right now. 13, 11, and 3. With each age and each child comes whole set of "fun" issues to tackle and it my privilege to be the one they run to with them.

I've said it to them their entire lives and I'll say it again, "Of all the kids in all the world if I could choose the ones I wanted I would choose you. I really, really would". More than just loving them, I get to say that I like them. It was a good mother's day and I hope yours was too.

Take care my friends. I have no idea when we will have service again so it may be a couple days before we can post. Until then, enjoy and have a great day. Trish

Pleasantly Surprised

Between the episodes of drama in our home last evening we found ourselves to be pleasantly surprised by the following event:

BATH TIME!

For the first time in her LIFE she played, she splashed, she cried a little, and the she ...

SMILED!!!

All the while she was sitting in the bath tub.

Dave and I had SO much fun watching her enjoy something so normal. No central line, no IV. Just a little girl with a band aid, a button, a big scar and an ostomy bag. Yep, this is our normal and I wouldn't trade this life for anyone else's. We eventually went and got Blake and Allie out of bed so they could enjoy watching her play too. We blew bubbles for her and she splashed water and smiled that amazing smile while her eyes twinkled. What a great memory.

Soon afterward the nurses(ours brought a back up along with her) arrived and all the fun ended. They finally left around 11:30 no IV in place and two knots on Ashley Kate's thighs were they were forced to push the very thick, very painful antibiotic shots into her muscles. This morning she is very sore and can't stand to be held. She is STILL signing to us that her legs are hurting and I'm sure she won't be forgetting the whole ordeal for quite some time. Ash is so smart and she now knows what that nurse is coming here for. They are not going to be friends.

Last night was even more confirmation in my mind that I have NO desire to ever be a nurse. I admire them, I appreciate them, but I could NEVER be one of them. It doesn't matter how sweet they tried to be to Ashley Kate or how loving they were after the sticks she no longer trusts them and thats that. As they closed the front door she clapped and clapped then snuggled her self into my chest with that amazing smile. She thinks she won because they left. Poor girl has no idea and I can't stand the thought of breaking the news to her so I won't.