February 2007

February 28, 2007 (way to early)
Dad: We met with everyone yesterday in the Discharge Meeting. All seems to be moving forward. Still some loose ends that could cause delay and certainly lots of other things that could unravel and put things back. So the official date for discharge as of today is March 6, 2007. We have our out of house transport scheduled for Friday. I probably already said what that is, but if not it's hospital speak for a "test flight." We're still a little hopeful to be able to take her somewhere like the zoo but we'll have to see - depends on her, the weather, etc, etc, etc.

Ashleigh is just now getting back to full calorie and volume on her feeds. She's having loose stools tonight so we'll have to see how it goes. We've spent the last few days trying to get her worked back up to full throttle. She's lost somewhere around 400 grams through this nasty tummy bug. That converts to just under a pound. That converts to nearly a tenth of her body weight. That's a considerable percentage of weight so we're trying to ride the balance of giving her what she'll take but not giving her so much that she just dumps it (poops out everything plus some). The pulmonologist that is on this month has been flexible with finding that line.

It has been beyond busy. We get up, get everyone ready to roll, make a drop off at school, drive to the hospital, spend most of the day in training, then do trach care with Ashleigh. If we have time we go ahead and give her a bath too. Then we head back and pick up our other daughter. Then we come home and work on getting the last little details finished up in Ashleigh's room. Somewhere in between all that we find a bite to eat, a few hours to sleep and all the other stuff that normally happens in life.

Soon we'll be rooming in though so the schedule will change again. Then, if all goes as planned, early next week the schedule will change yet again. My guess is from that point forward it will be a constant tweaking process.

Thank you everyone for your continued thoughts and prayers. We are trying our best to keep 'all systems go'. I'll update as soon as I can again. Thank you for checking in. I know the updates are sporadic right now.

February 23, 2007 (afternoon)
Dad: Ashleigh is starting to get her strength back after that nasty bug. She's still a bit weak, but is overall doing much better. There have been numerous people out from the hospital with the same bug and say it was no fun at all. Michelle is working through it right now. I'm keeping my hopes up that I'll be able to avoid it.

Ashleigh ran a fever off and on yesterday. Some have said it was probably the bug. I also saw some signs of teething again last night but haven't seen any today. Could've been either or neither.

Ashleigh is wearing a onesie today that says "Instructions not included" on the front.

She's currently on half breastmilk and half pedialyte. She tolerated pedialyte all day yesterday and so far so good today on the mixture. I'm guessing she'll work back up to her bolus feeds over the next few days. Right now she's on a lower amount that runs continuously.

Training is still going well. We still hope to complete the training part sometime next week and then start our residency (the four day room-in) towards the end of next week. I guess somewhere between all that we'll graduate and start our masters degree when we walk out the front door of the hospital.

The sleep study came back okay. Her blood gas after her sleep study showed she was actually being over oxygenated. She had been on the ventilator for two full days before because she was sick. So that shows that some weaning is really necessary at this point.

There is still so much to get done before our "day of d(ischarge)" and even less time to do it. Let the fun begin.

Thank you all for your continued thoughts and prayers. My prayer is that Ashleigh will continue to gain strength, avoid any other infections or viruses, and that everything will come together for us to safely bring home a healthy little Ashleigh. Everyone, including her big sister, is ready.

February 21, 2007 (evening)
Dad: Can't believe it's been almost a week since I updated. It would literally take me a week to type in everything that has happened since the last post, so I'll just do my best.

Training is going well. Lots of very valuable information. It's almost overwhelming at times. Not so much trying to absorb all the information as a student, but more from thinking as a parent just how important this information is. There are a zillion different scenarios that could challenge Ashleigh's health. We'll probably only experience a few hundred (sort of being sarcastic, sort of not), but we have little control over the variables like when and how and what. Bottom line - you have to be able to recognize there is a problem, determine what is is, and immediately jump in and figure out how to solve it with the equipment available to you. This training puts us in that mindset and gives us the fundamental knowledge we need to do that.

Ashleigh (and our other daughter) both got hit with a stomach bug. Both got it pretty bad. Tonight both of them are feeling a bit better, but I gotta tell ya, the past 24 hours have been challenging. Michelle and I felt like we were standing in the middle of a frozen pond that was cracking and breaking up. Kind of like jumping from one hunk of ice to another one. It turns out that Ashleigh has C-diff again. Not sure if the stomach bug and that were/are at all related - but we'll have to deal with that again. We have to talk with the pulmonologist tomorrow to find out whether they will treat it with antibiotics like last time.

Some of the hospital staff came to our house today to be sure we've got an overall good set up for Ashleigh. There is a laundry list of items we needed. Fortunately most things we were in good shape with but I have a few items left to be sure we get straight before Ashleigh comes home. The updated date on that is now either March 5 (Monday) or March 6 (Tuesday). A little trivia: if she is discharged on March 6, she will have been at this hospital for nine months to the day. A lot has to happen before that can happen so we'll continue to work toward that goal and do our best to make it happen. Lot's 'happening' - get it? We have a meeting on Monday with everyone that is involved in one way or another. It's a chance to get everyone on the same page and get dates circulated and approved. It's amazing to me how many different hospital departments, companies and agencies are woven into the fabric of her journey home.

Oh, I did count teeth - I was right! She has nine... at the moment. There is another spot on her top gum that looks a little lumpy to me.

Before she got the stomach bug, we were upping her feeds at night. She was supposed to bump up to 42 ml/hr, but for now she is on IV fluids. There has been some chatter about starting back feeds tomorrow. We'll see. She looks like she is feeling much better tonight. She's pink again. I never liked pink so much in my life.

Tonight they are doing a sleep study on Ashleigh. It's a 'standard' step in the discharge process. They want to be sure there is no apnea while she is sleeping. In this case primarily caused by mechanical or neurological anomalies. Everyone expects her to do well with it. They put little leads on her head before she goes to sleep and then monitor her breathing during stages of sleep.

They are still dinking with her blood pressure medicine. That process is frankly a little frustrating. I think there is a nice sized communication void between the people measuring her blood pressure (which is often times us) all the way through to the person that makes the decision on how much medication she needs (which seems to change frequently). My guess is this will be an ever evolving cycle until her body is ready to manage it without medicine. That part of the system is broke and so it's going to take extra time to find something that works for her - if we ever do.

There is much to be done before Ashleigh has the opportunity to come home and many things that can slow or halt that process. We are very thankful for your continued prayers for Ashleigh and that this process will continue to have enough momentum to get Ashleigh home.

February 15, 2007 (evening)
Dad: Happy (belated) Valentine's Day everyone.

Michelle and I made it through our first day of training today. We'll be training four days a week through early March and hope to be discharged somewhere between March 6 and 13. Oh yeah baby, I said the "d" word - discharged. Man that sounds good rolling off my tongue... discharged, discharged, discharge-a-mania.

We have to successfully complete training and then go through a four day 'room in' where we do everything for 96 hours straight. The nurses pretty much just get the supplies and we do the rest. For the ones that have been reading this for a l-o-n-g time, you know this will actually be our second room in. I'm confident this one will go better. Had we gone home at the end of the first room-in, I wouldn't be talking about the second one. But moving on. After all that is accomplished, our Creator willing, we will finally all travel back home and be under one roof to start the next chapter of this crazy thing called life.

Ashleigh is probably going to go home weaning 8 hours a day. We're kind of settling into that being her best place for now. I feel that will go up over a short amount of time. She needs to grow more and continue to strengthen her muscles. I obviously can't predict the future, so we'll walk down the road a step at a time and see. Her primary pulmonologist thinks she might be off the vent by this fall. She'll still have her trach for another year or more.

She's cut a few more teeth recently. I need to try and count them all up. I think it's probably around 9 now. I've kind of lost track and she's not very cooperative when you try to dig around in her mouth. By the way, she bites hard and those teeth are sharp!

From a physical/developmental side, she seems to be getting stronger. Just over the past few days she's started to straighten her legs when she's on her belly. The result is her gluteus maximus waving up in the air. She doesn't have the arm strength yet to get her upper torso off the bed - but she's able to kind of wiggle around a bit in that position. I don't think it will be long before her arms begin to play a more significant role in moving around.

Her feeds during the day are the same volume for now. She is tolerating her bolus feeds better, still some wretching but not as bad. We did go up to 40 ml/hr through the night. That's helped her weight gain even back out. She was up and down before we did that. She's 11 pounds and about 4 ounces right now. Slow, but mostly steady gains overall.

The next few weeks are going to be excessively busy trying to keep up with everything. Our goal has always been for Ashleigh to "come home healthy." Whatever we need to do to get there. Some days that goal seemed nearly impossible, others just kinda far, far away. Today it appears to be in reach. I'm going to hold on to it. We may get side swiped with something unforeseen. We might get to come home on the schedule I mentioned earlier. One day at a time. We'll see. I have learned to aggressively work toward the goal, do every thing I possibly can to achieve the goal, and let prayers and our Creator's will fill the void, even when the void seems impossible.

Through this experience there are seconds burned into my mind that seem longer than eternity. And then there are full days that are some sort of cataclysmic blur. There are notes from people I've never even met offering us encouragement. Thank you all for your continued thoughts and prayers for Ashleigh. Thank you all for your words of encouragement and support for us ...Ashleigh's family. I am humbled, grateful and often bewildered by it all. This is not a journey that I would suggest but I have learned much already. Plus I've been able to spend time with, and be a part of, a miracle that's still in progress. Really all of us reading this have been a part of this little miracle I like to call 'doodlebug'. That's awesome, don't you think?

February 13, 2007 (afternoon)
Dad: Ashleigh got back from the O.R. about three and a half hours ago. She's doing pretty well. Still a bit groggy - but ready and willing to play. For the most part the bronch backed up what we all thought to be going on internally. She still has malacia in her upper airways. Her breathing heavily causes her airway to collapse. The two positives out of this are that she does not have any granulation tissue in her trachea or stoma and that her airways (though still floppy) are growing and getting larger. The second of those is very reassuring to me. That is good evidence that her breathing issues will get better with time.

We are going to orientation in a few minutes for vent training.

Thank you for your continued prayers for Ashleigh.

February 11, 2007
Dad: Many have asked about Jacob. No one could tell you about his incredible story better than his mom. I would dare not even try. Here is a link to Jacob's website, narrated by his mom, Trovia.

http://www.caringbridge.org/al/miracle.jacob/index.htm

As I said a few days ago, these are incredible people in every way. I know they would appreciate your thoughts and prayers.

February 11, 2007 (afternoon)
Mom: The C-diff test came back negative. The test for the third fat absorption hasn't come back yet. It might by tomorrow or Tuesday.

Friday afternoon Ashleigh was having yet another hard time with wheezing and just really working to breath. It just so happened that her primary pulmonologist came in and saw what she was doing. He thought maybe we needed to change her trach, so we did and she was still working hard to breath. He noticed too that she wasn't in a playful mood like she usually is or smiling. She also hasn't gained but 35 grams in the past ten days, where they want her to gain 20 to 30 grams every day. He ordered Atrovent every six hours, where she was getting it every twelve hours. After all this was done he wanted to see how she would do through the weekend. Well as of this morning he decided he would send us home on the ventilator. We start training Tuesday some time. He also wants to take Ashleigh to the O.R. and do a bronch on Tuesday. He wants to go up the nose down to her trach site and see if there is any granulation tissue build up. He put his finger over her trach hole and said she wasn't moving any air past the trach up through her mouth and nose.

She is still doing the 12 hour weans and we are not going to 16 hours tomorrow. She has proven that she can do 12 hours but is very wiped out at the end of it. I am going to talk with the docs and put her back to 8 or 10 hours, so we aren't pushing her so hard to be able to gain weight  and develop physically and mentally.

Jason and I put Ashleigh flat on her back today to do trach care and she was trying to pull herself up to a sitting position - like she was doing crunches.

Thank you again for your thoughts and prayers. Please especially keep her in your prayers  for her bronch Tuesday and the other fat  absorption test.

February 8, 2007 (afternoon)
Dad: We talked with Ashleigh's pulmonologist a little earlier this morning about Ashleigh's pancreas. Two of the "other things" that her not absorbing fat could result from were pancreatic functions. The blood tests were done this morning to test specific areas of pancreatic functions. (Side note: Little Ashleigh has more needle marks than a fast food table has wads of gum on the underside.) We did get the results back a little earlier for those tests and they were both normal. Is this not the longest, bumpiest, and most vomit producing roller coaster ride you've ever heard of?

So next they want to check two more stool samples. One to see if she has gotten rid of C-diff and the second one to measure her fat absorption again. We are going to hold off on conversations with the GI doctors for the time being.

With everything going on over the last few days, I need to update you all on some other things. Her weans are now at 12 hours straight off the vent. We skipped yesterday but she is back off the vent again today, this being her third day of a 12 hour wean. It's truly unbelievable. She had a bit of a hard time with it on Tuesday. She was wheezing fairly bad and required extra breathing treatments, but made it the full 12. On Monday of next week, we will try 16 hours and see how she tolerates it.

In the midst of all the other stuff, she's still popping her teeth in like a mad woman. She cut two more teeth this week and has two more that appear to be close to breaking through.

From a physical therapy standpoint, if you get her in a sitting position she's able to balance herself for a good bit. She bobbles around some but is getting better trunk strength as the days go by.

She is still very slow to put anything (except her passy) in her mouth. Speech and physical therapy are working with her multiple times a week. Right now we are 'playing' with bananas, sweet potatoes and cereal (mixed with breast milk). This is something that will take a long time it seems. Some other parents that we have come to know that have kids with gastrostomy buttons have the same struggle. It apparently, in cases, takes years and years to get to levels generally seen in the first year of a healthy babies life.

Michelle and I know we were not alone when facing these hurdles. There is no way to express that, no way to really show appreciation for that, but I'll keep trying by saying "thank you" over and over again.

February 7, 2007 (afternoon)
Dad: We just talked with Ashleigh's pulmonologist about the results of the sweat test. It came back negative. What a huge relief! Whew. Thank you so much for your prayers for Ashleigh. Her number was 9, anything between 40 and 60 is borderline and anything over 60 is a pretty solid positive.

She is definitely a miracle baby.

The question of why her fat absorption is low is still there and we'll be talking with other doctors to decide what steps to take or not take. They do want to do a pancreatic test tomorrow (blood test) to be sure her pancreas is functioning normally. That could be another cause for poor fat absorption.

I can't tell you how much we appreciate the care and prayers we've received just in the last 24 hours or so. It means so much to us to know Ashleigh is being thought about and prayed for by so many people.

February 7, 2007 (morning)
Dad: They have completed the sweat test this morning. We're just waiting for results. The test is painless fortunately. She's back asleep for the moment. Thanks for your continued thoughts and prayers.

February 6, 2007 (evening)
Dad: Ashleigh's sweat test will be performed in the morning. We should have those results by tomorrow afternoon. This appears to be the first hurdle of many more.

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Please be in prayer for one of Ashleigh's friends, Jacob, and his family. He had a stroke over the weekend and suffered brain damage. It appears he is not going to recover and tonight will be allowed to let go. He and his family are awesome people and have been (and will continue to be) a huge inspiration to Michelle and I. We will miss him dearly and pray that his family will be able to find peace through such a time of turmoil and mixed emotions.
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February 6, 2007 (afternoon)
Dad: Potentially bad news today. Ashleigh's care team believes she may have Cystic Fibrosis (CF). They are suspicious because of a fat absorption test they ordered when she was having runny stools. Tomorrow they will do a sweat test. It will help them determine whether or not she has CF. We should have the results of that test later tomorrow. If that test comes back borderline or positive, they will follow up with a blood test that takes several weeks to receive results.

This would be detrimental as it is an incurable disease as of today.

I can't even express where we are emotionally right now.

Thanks for your continued prayers. I'll do my best to update the site as we find out more info.

February 2, 2007 (morning)
Dad: We ended up meeting with Ashleigh's care team yesterday (Thursday) instead of Wednesday. And as a precursor for what was said in the meeting, she has gone two days now with being off the ventilator for eight hour stretches.

Her primary pulmonologist said he thought at the beginning of the month this would be "an easy decision". That he thought "we would go home with the vent". He said he thought we would "try to wean her and she would fail. But she didn't." She is obviously not off the vent yet, but her progression with being able to stay off the vent for these longer durations was fairly unexpected. For me as well frankly. I really thought at four hours we were maxing out. So he feels like we should continue on. That we should try to wean her off the ventilator before we go home.

That's a terrifying thought at first. No backup support. What if she gets a cold? The thoughts can ramble much quicker than I can type. The tendency is for us to hold onto that 'security blanket'. But if she is ready and has the capability to work through minor viruses and infections, it is the best thing for her. The ventilator does not 'breath' the way we naturally breath. So the longer she is on the vent, the longer she's not breathing the way our body was built to breath.

The thing is though we still have a month or so to live out that decision. We still have adequate time to see if she is really ready. We will not begin training right now but we will stay on the list and at this point can start anytime we need to during the month of February. So for now we will continue pressing on the weans and see how she can tolerate it.

The plan is to go to 12 hours (off the vent) next Monday. The following Monday go to 16 hours. Then the following Monday... off the vent. Read that again and soak it up. "Off the vent?" - really? It's been so long and it seems almost un-natural.

So you can imagine we have very mixed emotions and very serious concerns (as it seems is the norm these days). We'll continue to take it one day at a time. One decision at a time. You have to plan, but you can't get too far ahead of yourself in this game.  Life is something that can't be predicted, evaluated, and certainly not given up on. It is, however, something that can be celebrated. And I hope everyone is doing that.

Thanks you so much for your continued thoughts and prayers. One day at a time.