November 2006

November 30, 2006 (evening)
Dad: Mom and I played tag team today. She spent time at the hospital this morning and I was there this afternoon/evening. Ashleigh's derriere looks a whole lot better. The really deep 'wounds' are still there, but the skin is healing.

She lost weight last night but is still just a few ounces under ten pounds.

Earlier today before I got there, Ashleigh decided to pull out her TP line. Completely. Michelle left to go get some lunch and came back to the nurses finishing up putting a new one down. Of course, they had to stop feeds, take an x-ray, retape the line to her face and try to keep her from vomiting in the process. Michelle said she was mad, mad, mad. A cluster of bees coming out of their hive is kind of what I visualize. Interestingly, she did not vomit.

Her nurse and I gave her a bath and did trach care this evening. Ashleigh was so tired she barely kept her eyes open during trach care. She was worn out. I don't think it took a full 60 seconds for her to be sound asleep after we were done with trach care.

We did not get to talk to the surgeon today. He ended up being in a 'complex surgery', so we'll have to catch up with him. Don't know when yet.

Ashleigh got her new brace today for her leg. The other one was not staying on (probably because her legs are in constant motion). So know she has leg braces that will help to keep her ankles straight. They want us to start with an hour a day for now and work up to longer periods of time.

Although Ashleigh only took about a 30 minute nap this afternoon, she was really in a pretty playful mood. I could tell by 6 or so that she was starting to mellow. The smiles starting turning into blank stares.

What is amazing to me (okay, one of the things that is amazing to me) is Ashleigh's overall disposition. She is really a happy baby. Sure, she gets hacked off about stuff and is fussy when she doesn't feel good, but for all the opportunities she has been challenged with that could have changed her character, she still glows a  warmth and love that is irresistible. Innocent exhilaration. A delightful happiness just to be alive. I think there's a lesson in there somewhere.

Thank you each for your continued thoughts and prayers for Ashleigh's healing, and for us as a family. I am very grateful.

New photos posted.

November 29, 2006 (evening)
Mom: Ashleigh is doing pretty good. She has had a little thicker secrections out of her trach the past two days, but I think that is due to her teething again. She is drooling, and has a runny nose.

Jason and I have a meeting again with the surgeon tomorrow regarding the surgery for the G-tube and the fundo. She is still vomiting about 5 to 6 times a day. Some of it is stomach acid and some is nothing but mucus. I'm almost for the fundo now, just to not see her turn so beet red and rench like she does. We will see after talking with the surgeon.

PT worked with her this morning. They sit her up on her bottom and let her go. Ashleigh sat there like a big girl without falling over for a few seconds. I was excited to see that. I think that is a big mile stone other than walking. Of course for us, her just eating by mouth would be our big mile stone.

Ashleigh is still gaining weight, not as much as the doctors would like to see but it's there. She is almost pushing 10 pounds. She will be 6 months old tomorrow. She is still a little behind on the weight, but look at the big picture. She is still with us and growing and making progess every day. Glory be to God!!!

Thank you again for your continued thoughts, prayers and support.

November 27, 2006 (evening)
Mom: Ashleigh is still vomiting. This morning I walked in and the nurse said when she spit up the tube came out of her nose quit a bit. So the feeds were stopped and an x-ray was taken to check tube placement. It was about two hours later when the nurse came back in and said the tube was still in place that she will turn the feeds back on. I don't expect Ashleigh will gain any weight tonight, but you never know.

Jason went back to Prattville on Sunday with Emily and I'm staying here in Birmingham. Saying that, I had to change her track with a nurse tonight (I'm used to doing this with Jason). It went pretty well. Of course she didn't like it, but she doesn't like just the cleaning either.

The doctors didn't really say anything about her not gaining a bunch of weight over the weekend. Of course they asked if we were going to do the surgery or not. I just told them we haven't made a decision yet.

Thank you for your continued prayers and for the love and support you show through emails and cards.  I can't express how much that means to Jason and I.

November 24, 2006 (evening)
Mom: Well our Thanksgiving was good. I cooked turkey and some fixins' to go with it and brought it to the hospital. We put the mat down on the floor, closed the curtains, put Curious George in Jason's computer to watch and the four of us had a family picnic dinner. Ashleigh was  in a good mood, she didn't take a nap until around 4:00 pm and didn't wake back up until 7:00 pm. I'd say she was worn out from the day. All that to say we had a pretty nice Thanksgiving.

On Tuesday they reduced the feeds down to 25 ml but by Wednesday they went back up to 28 ml. Ashleigh wasn't spitting up at the 25 ml, but started again at the 28 ml. I have to say though it isn't has much nor does she have as many stools. She has only gained 10 grams each night since then, I'm sure we will hear about that on Monday and they'll want to up the rate on the feeds again.

Her botton is looking much better. She still has the red spots, but not as red and bloody.

PT came in today to mold her for the AFO braces but Ashleighs feet were too small so they had to custom make splints until her feet get big enough for the mold. She wore them for about 2 hours and it didn't seem to phase her.

Jason and I still haven't made a decision regarding the surgery for G-tube and the fundo.  We did tell the doctors we would let them know after the Holidays. I still don't know which way to go.

Please continue to pray for Ashleigh health, for Emily to put up with Jason and I and that God would lead us in his direction in making the right decisions for her.

November 21, 2006 (evening)
Dad: Ashleigh's vomiting has gotten much worse. The other morning when we were supposed to try the feeds into the stomach (NG) she vomited three times after they turned off her TP feeds. Her pulmonologist had concerns about doing the test, I had concerns about the validity of the results of the test, Michelle was nervous she was going to aspirate - we didn't put Ashleigh through it. I think we all felt like she was going to vomit the feeds under the circumstances - we just all had different reasons why we felt that way. None of us would have been able to prove our case, so what's the use of putting her through it?

Interestingly though, since then she has vomited what appears to include bile twice now. She did it again this evening and we had it tested to make sure it didn't have any blood in it. It did not. So they reduce her feeds when this happens. Tonight, she did vomit later (a few minutes after she got really hacked off), but it was mostly clear mucous. There did not appear to have any (or at least much) stomach content at all. So, of course I'm thinking about all of that. And so my theory is that the last vomit was from the TP line aggravating her after she got so mad. But the times when it's nothing but stomach content I have to lean more and more towards too much food. I've always asked the question about her being able to digest the volume (as I said in the last post and probably others). Unfortunately, there's no magic way to know how much volume she can handle and there have always been multiple theories on the cause of her vomits, so it's easy to get blinders on when one theory starts to have some punch behind it. It certainly does make sense.

They reduced her feeds down to 25 ml/hr through the night (tonight) so we'll see what kind of difference that makes. That's 6 ml/hr, so over 12 hours that's over 2 ounces less volume. The change has the potential to change her vomiting and stool frequencies and her weight gain or loss. I can say for sure tonight after her feeds were reduced she was a completely different baby. She was smiling and interacting and playing (until she got mad and vomited). For the last two days she has not done a whole lot of intense interaction or smiling. We'll see if that all makes a difference and go from there.
                                             
She got so mad tonight because we had to start the Bactroban treatments back again. She still has MRSA in her stoma. They said there was not MRSA around her stoma. In other words, in the stoma but not on the skin around her stoma.

Tonight, Ashleigh was really fussy. We could not get her calmed. I noticed her sats were not real great (mid 90's) and her chest was rattley. So we suctioned her trach. The suction catheter came back up with a large mucous plug. She was fussy because she was having trouble breathing. She immediately calmed. We asked them to go ahead and do her breathing treatment a few minutes early to be sure anything else down there got broken up. She didn't seem to have much immediately after treatment but then had another (smaller) amount of mucous about a half hour later.

Her bottom is slowly healing. The skin that is broken down is beginning to grow new skin and is not quite as cherry red. It still looks excruciatingly painful, but it is getting better. If her stools were to decrease in frequency, that would certainly help.

We have a meeting scheduled tomorrow with her care team.

This week has been quite stressful. This stress is a little different. It's about why things are happening (or not happening), but also about the path that best addresses them (and the ramifications of those decisions). That may sound like some of the earlier decisions we had to make, but the options and outcomes are far less black and white. It's about correcting a problem or starting a whole new chapter of them. Unfortunately, no matter which decision we make, we won't know the answer until after it's said and done.

I continually pray that we make the right decisions at the right time.

November 18, 2006 (evening)
Dad: Ashleigh's been making us work the last few days. She is still throwing up and still is in the process of healing on her bottom. All the redness is gone, but the skin was so bad before that it's taking a while to grow new skin. She still is having fairly frequent stools so that makes it quite a challenge to keep it healing.

Her stools were so frequent on Wednesday that when they weighed her Thursday morning, she had lost over 100 grams (yes, that's more than 3 ounces). It has historically taken 3 to 4 nights for her to gain that much weight. She had just cracked the 9 and a half pound mark, but she's back under that right now. Fortunately, she just lost weight that one night, she's gained a little here and there every night since. They started giving her Culturelle, which is a probiotic bacteria (Lactobacillus) that helps restore balance in the intestines. That has helped to thicken her stools and make them a little less frequent. She was out of control there for a few days. You literally couldn't get a clean diaper closed up before she had soiled it and you were forced to start over again.

Her vomiting seems to be a little different story. She vomited so much on Friday that her feeds were turned off for two hours. Her bowel contents started backing up into her intestines and she actually started vomiting that. Lovely. That means she was getting her food in faster than her body could get it out. I've continually asked that question (about volume) and continually got the answer that the intestines could process it as fast as they gave it to her for as long as they needed to. Apparently that's incorrect. Hopefully, the Culturelle will help with that.

On Monday (as Michelle mentioned) we are planning an 'experiment' to test for reflux. We convinced the pulmonologist to start with 15 ml instead of 30 ml because her stomach has been empty for so long. Is that still too much? Right now, she is getting 31 ml/hr. So we are giving her 30 minutes of feeds in about 3 minutes (or less). We'll see. No matter what, she's probably going to vomit because there are really only two variables changing. One is that her TP feeds will not be running, and two is that she will have contents in her stomach. She'll still have the TP line there and all the other apparent variables that make her vomit now. I don't mean to sound pessimistic, I just feel like this is a half-baked test that will give us inconclusive results. For me personally, I just want to see how closely the vomiting comes after the feeds. If she does spit up right after, it indicates there is something wrong with her digestion (empty stomach, imbalance, reflux, allergies, etc). If she doesn't immediately vomit, then it's a lot less likely that she has reflux or some kind of digestion problem and her vomiting is related to an external factor (like the TP line, to much volume, etc.). But using this test to prove or disprove reflux is stretching it.

We still believe she is teething and it actually looks like it will be her eye teeth (stations "H" and "C") or the ones right next to them ("G" and "D"). She has been chewing non-stop on her passy and anything else she can get in her mouth, including her hands.

Her heart rate has been a little crazy over the past few days, but today it has been elevated. She's not running a fever, so we were thinking it was pain related. When her heart rate kept hovering in the 180's and 190's this afternoon, we gave her some Tylenol. Her blood pressure was high then too. It really didn't seem to help which was puzzling. She took a nap after and then later got her breathing treatment. Curiously, after her breathing treatment, her heart rate seemed to come down. All of her vent stats that I could access appeared to be close, except her PEEP. It was reading 5 and 6 and it should be 7. After her breathing treatment, it did read 7 more often than 5 or 6. The strange thing is her breathing treatment earlier in the day didn't slow her heart rate down. Maybe it just took the Tylenol over an hour to help. I don't know, but it's certainly something we'll be watching.

This past week has been a huge blur. That insurance company is right, "Life comes at you fast." That's okay as long as you have a chance to step off every now and then. Otherwise, you end up focusing on crazy details and missing the big picture. And that is my constant challenge. Remembering to step back every now and again. To see where we have come from and to focus on where we are going.

We have been less attentive to this web site lately, but please don't think it's because we don't care about it. This is the best way to let everyone know what's going on and for us to gain inspiration and encouragement through the posts you all make. What continually amazes and humbles me is how many people care enough to stop by and read about how Ashleigh's doing. And even more humbled by all that keep her close to their hearts and pray for her. I am so grateful to each of you. So if we don't update, it's not because it's not a high priority or that we don't care, it's because 'life came at us fast' and we're waiting 'til it slows down enough to hop off for a minute or two.

November 15, 2006 (evening)
Emily got to spend time with Ashleigh today due to her school being closed because of the weather. They had a good time playing together.

Ashleigh is definitely teething. Jason and I noticed that her top gum in the front is swollen, red and puffy. So that is the reason for the diarrhea, the crankiness and just not feeling up to par this past week.  Regarding her diaper rash, we found out after the fact that a dermatologist was called in to look at her bottom to find out why it looked the way it did (duh, she is teething). The dermatologist took a swab to culture it (?) and told everyone to stop using the things they were using and suggested getting cotton balls with Cetaphil (mild soap) and mineral oil to wash with and then put the custom paste on. That was all done around 6:00 pm on 11/14/06 through the time I gave her a bath tonight (to get all that oil junk off her rear end). It hasn't helped her bottom at all. So the nurse and I said we would just leave all that off and let it air dry again over night and see how it looks in the morning.

I spoke with a surgeon yesterday regarding the fundo. He recommended we bolus feed her through the NG and see how she tolerates it. If she spits up with that, then he will know that she has reflux. I asked him about the Ph balance test, he said that wasn't a good test for babies that would be accurate. So Monday her TP line will be turned off for two hours then she will be fed an ounce (through the NG tube), wait an hour and do it again. If she tolerates it with no spit ups then they will do the same thing Tuesday, but up the feeds to two ounces and so forth. Jason thinks they are setting her up for failure because of the volume - she hasn't had anything in her stomach in a month or so, of course she is going to spit up until it gets regulated. Anyway, we shall see how BABY GIRL does with that. My prayers are that she doesn't spit up or aspirate any of it.

PT worked with her again today. They are going to mold her ankles and feet for the AFO braces. As she was looking at Ashleigh today, she noticed more and more that her ankles were folding in and Ashleigh wanted to push up with the tops of her feet instead of the bottom. They will have her wear those a couple hours a day until she gets ready to start weight bearing.

Thank you all for continued thoughts and prayers. Also thanks to everyone who has been to Birmingham to see her and pray over her and our family.

November 14, 2006 (morning)
First, thanks for all the ideas on treating Ashleigh's bottom. We're going to push all the proposed solutions to her care team. Maybe that will spur some conversation on what is causing the problem. That will be the only way to get rid of it once and for all. Last night it was still just horribly painful looking.

If you take the inflammed red, broken down, bleeding skin on her bottom out of the equation, Ashleigh's day yesterday was pretty good. We changed out her trach yesterday too. It's gone better before, but it's gone worse too. What counts is that she made it through without any trouble, besides her getting mad.

She also had PT yesterday. We talked about the way her legs are developing. Her strength is very good but they are going to have to start watching and working on the way her ankles bend. She seems to want to put weight on the side of her foot. Her therapists said it wasn't a big deal for now because she's not ready to start standing up, but they would start to work on it and watch, possibly using braces when she does start to bare weight. Her laying in the bed on her back so much is really challenging her hip, knee, and ankle joints and also making her muscle tone develop in a different way. We get her up as often as we can, but she is still not able to lay on her tummy or wiggle around as much as a 'normal' baby.

She seems to still be following a similar sleep pattern. Sporatic and very short naps during the day, an hour or more nap later in the afternoon, and then sleeping through the night (mostly).

Her weight was up by just a little more today, so she is still gaining weight.

I know a lot of people have this little one on their minds and are praying for her continually, and I continually try to express how that feels as her dad, but I can't. It's humbling, encouraging, inspirational, and so many other emotions and gestures of appreciation that I can't seem to find the words to wrap it all up and put it into something comprehensible. Please just know every time you stop and think about how she's doing, or every time you close your eyes and pray a prayer for her health, or even just tell others about the struggle she's had... please just know that I am sincerely thankful and infinitely appreciative.

November 12, 2006 (evening)
Ashleigh's day today was okay. We spent some time together as a family. Ashleigh absolutely loves her big sister and is nothing but smiles when she is interacting with her. I think the feelings are pretty mutual with big sister too. I know it's rough on a seven year old to grab the concept of invisible germs and hospital rules (gowns/gloves, etc.), but she does a really good job overall. I have to remind myself sometimes that she is only seven, like when I catch her putting her gloved hand in her mouth, but I'm sure the glove company doesn't mind a bit (because she has to change them out so often). I hope those things are very biodegradable.

We're in the process of trying to find a new material (or different way period) to care for her stoma/trach area. With all the vomiting, it is making the Lyofoam that we have traditionally used, not a good option. It's just holding in the moisture. A parent who's son has a trach is helping us out by sharing her experiences and wisdom - which is very much appreciated.

Ashleigh's bottom looks terrible again. It literally hurt me just to wipe her today. It's got several spots that are bleeding. She had a lot of stools yesterday and even though diapers were changed frequently, it still got really bad - quick. It was never completely healed from the last round, but it was getting better. I think it is worse this time. Though it is kind of a hunch, she might be starting to teeth again, her top gum looked a little bit swollen Saturday, but not as much today. She has not been running a fever or drooling much though.

Her breathing over the weekend has been the same as from the last post. She starts working harder before breathing treatments and then after is okay again. Except when she vomits afterwards. That hasn't been as much of an issue today as it was Saturday. She vomited four times Saturday evening and we think two times that morning. Several times she was moving around (or being moved around) and I could understand that - either her PT line or trach was irritating her, but more times lately she has been laying there and she'll vomit for no apparent reason. Those times seem to point more towards reflux, though you never know what's moving around in her throat even while she's just laying there breathing.

She yawned real big today and I happened to be in a perfect spot to see her TP line going down the back of her throat. Seeing that was a visible reminder of why she gets gagged. I would.

Tomorrow brings another sunrise. And hopefully for Ashleigh a better looking bottom. Thank you all for continued thoughts and prayers.

November 10, 2006 (evening)
There is so much of the 'political' stuff going on with vomiting, raw bottom (off and on), MRSA, and now feeding decisions and long term planning that it's easy for me to forget to tell everyone how Ashleigh is doing. So sorry for using this as my soapbox. I think it's clear that I'm frustrated, but enough about all that. At least for tonight anyway (kidding).

Today Ashleigh had PT, but she was kinda tired so that didn't go as well as it usually does. She's been reserving the late afternoon for naps. Over the last two days she's been in a pretty good mood though. She has definitely been more active overall. Her legs are getting strong. We put rolls of sheets at the bottom of her bed to keep her from sliding down (the bed is on an angle so she is sort of sitting up). Yesterday, she got her feet on the rolls and starting pushing her self up in the bed. Up. Down. Up. Down. Up. Down. She was doing squats. She thought it was fun, she must have done that for at least four or five minutes. Her thighs had to be burning.

Her pulmonologist that's on this month gave us the option to increase her vent settings back to where they were at the beginning of the week. We decided to stay where we are. Her blood gas the day after the change was still in the normal range. Usually, when the vent changes hit her hard, she sleeps much more and also does not gain weight. She appears to be sleeping maybe a little less and she has made great weight gains all week long. We can tell when it's time for her breathing treatments though. She starts working harder to breath. But after her treatments, she's good again.

She now weighs (you sitting down?) 4265 grams, or 9.4 pounds (around 9 lbs, 6 ounces). They increased her volume this week by 1 ml/hour, so she is now getting 31 ml/hr of volume. With the TP line in place, they feel like they can probably increase her to around 32 or 33 over time. They calculate that number based on her weight, so of course as she grows that number will increase also.

We have not had any further discussions about the gastrostomy tube and fundoplication with her care team yet. I've done a lot of research, watched a laproscopic fundoplication surgery, tried to weigh the good and bad, and also spent time looking for less invasive alternative options. We have talked with other parents with children that have g-tubes (and had the fundoplication done). Right now, I'm still feeling pretty backed in a corner about the whole thing. I just can't believe that in 2006, that's the answer - wrapping part of the stomach around the esophogus. But I digress.

Thoughts and prayers are so greatly appreciated. It's so easy to get tangled up in the day to day. It's easy to get bitter about this whole process. It's so easy to feel isolated. It's easy to be overwhelmed. And it's very easy to get emotionally down. It's all about perspective though. Staying focused on what we want the outcome to be, no matter how far away it seems. Faith helps me with that. And reminding myself that so many people are thinking and praying for Ashleigh daily helps strengthen my faith. One day Ashleigh will come home.

November 9, 2006 (somewhere between night and rooster's wake up call)
We had a meeting (yesterday now) with Ashleigh's care team. Major topics were vent changes, weight/eating and timelines/goals. Everything tended to gravitate around the eating part in hindsight.

I can't decide what to say next. So I'll just blab out the big things that would be considered illegal blows in the world of boxing. If Ashleigh must come home on the vent, it means we must be trained on the vent. We cannot START training until February or March. Yeah, simmer with me. And even if she can come home without the vent, there is another issue. Her eating. Right now, she has a line that runs from her right nostril down her esophogus, through her stomach and into her intestines for food. She likes to grab that line and play with it. I don't think coming home with that is the best solution. If she pulls it out or somehow shoves it in further, that leaves us with a problem.

So Ashleigh has this thing called a mouth. I know, they're kind of uncommon in hospitals, they'd rather use tubes and stuff. But she does have one. Really. Only for some reason we can't use it for eating. The reason is a little elusive. We're a hundred and one percent sure she has reflux, she has emesis with yellow mucousy stuff, you know she didn't 'suck, swallow, breath' for a while, so she has to work on that, and cereal doesn't have as many calories as breast milk or formula, so she won't grow even if she was eating cereal and she could aspirate so we'll have to watch that too, and she needs more calories for her peak developmental growth right now, you know she's not going to be getting her full calories from eating by mouth even in March of next year, and she may be lactose intolerant, but it's okay we can just put her under, cut some holes in her chest and stomach, yank and hog tie her stomach around her esophogus, stitch it up, then cut another hole and stick a tube in her stomach with a little water bubble and a syringe for her to burp, but she probably won't ever be able to throw up again and she'll just turn deep red and wrench when she tries, oh, and she might develop an aversion to eating if the esophogus is pinched to tight, but she'll definitely be able to gain weight - probably.

STOP.

I don't have the answers, but I don't think I can accept that proposed solution for Ashleigh's circumstances until some other options have been exhausted. One of my favorite sayings is "frustration generally stems from ignorance or arrogance." I'm not sure which category I fit into right now, I just know I'm frustrated.

November 7, 2006 (evening)
Well, this is Michelle giving the update tonight and I'm far from being an author, so bare with me please.

They weaned the ventalator (pressure support) from 12 to 10. Yes, we were told they would only wean by one (go figure), but instead it was weaned down by two. She seems to be doing okay with it, though she is working harder to breathe.

We spoke with the nurse practitioner for some time about the MRSA issue. She said they would put the Bactroban ointment around the stoma and up her nose for ten days and recheck  after that. If not gone in that time they will continue doing it for another ten days. They will do this three times for ten days each, if not gone within the three ten day treatment then she is colinized with it and is no longer treatable.  The respiratory virus panel, as of today, is negative.  Hopefully, it will continue to be.

She is still spitting up. The doctors only seemed concerned about the fact that she is gaining weight. Dont get me wrong, Jason and I are happy she is too, but it isn't pleasent to see her turn beet red and throw up all over herself and the trach area.  So that is still a discussion that is in the air.

Jason and I changed her trach, of course she didn't like it and her heart rate got over 200. It wore her out so much that she went right to sleep.

I gave her a bath tonight and put her in the tub.  She would would make a big splash and think it was so funny for the water to come out and hit her in the face. She was definintely in a good mood during all that and in a decent mood through out the day.

Thank you so much for your continued prayers. Your posts and emails. You and the good LORD above are helping us get through this each day.


November 6, 2006 (evening)
Ever heard the phrase "choose your battles?" Well, I'm running out of troops. Today we found out that Ashleigh does have MRSA, which acutely elevates my heart rate, blood pressure and testosterone equally. (Hope that is politically correct enough.) It does not immediately mean anything threatening but opens up a firehouse of potential issues. Once you develop resistant bacteria it becomes harder to treat with each return of infection.

The treatment for today is to start Bactroban cream around her stoma. I don't know what their intentions are for internal treatment. A little more detail on the virus panel though. It was a respiratory virus panel, which means they are checking for RSV among other respiratory viruses like what she had before - adeno virus. If she has RSV, that will not be good.

We discontinued the Reglan this morning. I was being optimistic earlier, but apparently it was not doing anything. She vomited again later this morning. I take that back, it does appear that it did something. Her bottom is now raw again from increased stools. So thanks, makers of Reglan.

Fortunately, through all this extraneous junk Ashleigh is not requiring any additional ventilator support. The pulmonologist on for this month (first day today) told Michelle this morning that tomorrow he would like to reduce Ashleigh's pressure support by one. It's nice to have doctors rotate out every time I ...brush my teeth. The plan last month was to let her grow if I'm remembering right. In reality, reducing her pressure support by one is very unlikely to make any difference what-so-ever, but it would be nice to stick with a plan for more than a week or two. She clearly has not reached her optimal weight since that became the priority. Ironically, this is one of the battles I may pass on, unless we find out she does have some type of respiratory virus.

So we're back to square one on the emesis (vomiting) and so far we've gotten rid of one medicine (Reglan) and added another (Bactroban).

I think Michelle and I might need to borrow a few of the prayers you have already dedicated to Ashleigh - just for tomorrow.

November 6, 2006 (morning)
Well, let's see. Since the last post we've gone back to gown and gloves again. It seems Ashleigh has some kind of infection. They're trying to figure out what it is (it's a culture - so we wait until it grows enough to identify). We know for sure she has some type of staph infection around, and in, her stoma. Wonder what that might be from? Perhaps vomit? Hmm. The bigger question is whether it is antibiotic resistant or not. This will determine if and how it is treated. Remember the MRSA conversations about a month or so ago - that's where we are again.

The pulmonologist who has been on for the last 5 or so days thinks she has some other kind of virus, so they did a virus panel this morning. Not real sure what the point of that is, because in the past they generally have not treated viruses. I guess it may help in the big picture treatment of the infection.

They did the 'first Monday of the month' labs this morning. Her blood gas was excellent. Her pH was 7.37 and her CO² was 36. Way to go Ashleigh! Whatever illness she does have is making her sleep more often, but apparently it is not affecting her respiratory stature at this point.

We were finally able to get a step made in trying to end the throw-ups. I guess I'll start using the medical term since it's becoming so bloody common to have to say it - emesis. Unfortunately, it's one more medicine to add to the already too long list of medicines she is receiving. It's called Reglan. The purpose of the drug is to strengthen and increase the speed of digestion, essentially. The pulmonologist's theory is that it will help keep everything moving in the right direction, versus continual emesis. She's been on it almost a full day, perhaps a little difference so far. Before she started, her pulmonologist said it would take a day or two to see results. She has two emesis' in the last 12 hours that I'm aware of.

She is still gaining weight at a good rate. She's back over 9 pounds again over the weekend and had an ounce gain again last night. If the TP line is the culprit to her emesis (which I feel it is at this point) - that's the problem. They don't want to sacrifice her growth right now. I don't either, but I encourage anyone to try vomiting 2-4 times a day for two weeks. I bet you'll start looking for a solution rather quickly.

Thanks for continuing to think about and pray for Ashleigh. The human body still has so many mysteries that we as humanity have no clue about. When you have a child who challenges the edges of that knowledge it can very quickly become frustrating. When there are more "we don't know" answers than "that is treatable" answers, it can be radically discouraging. Yet, somehow Ashleigh is still here. Still smiling. Still growing. Still warming hearts. Her spirit burns bright. As a father, that brings comfort in a land of unreality.

November 3, 2006 (morning)
Ashleigh threw up 4 times between the last post and this one. I was there during one of them, and there wasn't a whole lot of warning. She did sneeze before, so I'm still leaning towards the PT tube being the culprit. It must be irritating something somewhere in her little body. It's aggravating to see her throw up for several reasons. The primary being - she's throwing up. We don't want her aspirating any of it into her lungs or even seeping back in through her stoma (where the trach goes in her neck). Secondly, unless someone is there to "catch it", her trach ties (in most cases) get drenched and require changing. We all know how much she loves that. We continually address it with the pulmonologists, but I don't think they feel there is a whole lot to do about it, especially since the tube is positioned correctly and she's (overall) gaining weight.

She was back under 9 pounds this morning (only by 2 grams though). That wasn't a big fluctuation, so no big deal.

She was in a pretty decent mood last night for her bath, even though she was throwing up off and on. She still seems pretty comfortable from a ventilation standpoint, but does appear to me to be growing restless in other ways. Haven't narrowed it down yet and it may just be my perception. She could be just tired of that bed. We get her up as often as possible, but she's still in the bed (or some variation of laying down) at least 20 hours a day.

Don't expect any changes today. I think they do plan on getting another x-ray soon to be sure everything is still the same with her right lung. They are talking about increasing her feeds again on Monday. They did make a caloric change to her food yesterday. Still the same volume, just more calories.

If you haven't noticed, I've been a bit on auto-pilot for the last few days. I've got myself scattered a little thin, but it's coming together. One day at a time. Ashleigh and family thank you for continued thoughts and prayers.

November 2, 2006 (afternoon)
Ashleigh was not in the best mood yesterday after all her shots but she is better today. She got two shots on the 31st and 1 on the 1st. Her heart rate is still a little elevated today overall, but is better than it was yesterday. It was up all day. Apparently with Tylenol, I guess she was still feeling the affects.

She did break the 9 pound mark last night. She is just barely hovering over it (4090 grams), but that's good progress.

PT worked with her on taking a bottle today. She actually did pretty well toward the end, but then spit up some. Her therapist thought is was most likely because she is stuffed so full already from the continuous feed (tube). The analogy mentioned was smelling (or trying to eat) the food in your to-go box in the car on the way home from the restaurant.

Will try to post more tonight.

New photos added.