December 2006

December 27, 2006 (evening)
Mom: I hope everyone had a great Christmas. Ours was very good considering we spent it in the hospital. Ashleigh and Emily got some great things. For Jason and I, we were just happy to spend it with our girls and family no matter where we were.

Ashleigh's primary pulmonologist weaned her ventilator Tuesday from a PEEP of 7 to 6 and pressure support of 10 to 9. He will leave it like that until after the first of the year. She seems to be doing okay with it. She had a gas this morning and it was in the range the doctors like for it to be in.

The bolus feedings are going so so. She still has a hard time with it. Her heart rate gets past 175 and wreches a bit. Today and yesterday we bolus fed her 65 ml over 30 minutes and tomorrow we will bolus feed her 70 ml over 30 minutes. I don't thing she will tolerate it, but we'll see.

She finally cut the top right tooth this morning, but still has the top left tooth to come in. Her heart rate continues to be high, but hopefully it's because of those teeth coming in. I put some oral-gel on earlier and it seemed to help. She has had increased poopies as well. Because of the poopies, her bottom is raw again to the point of bleeding. Who knows, her heart rate might be up because of her bottom hurting (I know mine would). Everythings a guessing game until they can tell you what's bothering them.

Thank you all for your continued prayers.


December 25, 2006 (morning)
Dad: Merry Christmas everyone. Ashleigh gave Mom and Dad a Christmas present this morning. She rolled over on her tummy and went to sleep! First time for her to actually stay on her tummy by herself in her bed - definitely first time for her to sleep that way. Picture to come a little later. For now, here is one from last night. Yes, those are reindeer antlers on her head - Michelle couldn't resist herself.



December 23, 2006 (evening)
Dad: The countdown is on for deadline time. Christmas is on every child's mind and there ain't nothin' stoppin 'em from wondering what it is they're going to get. I'll just say it. Michelle and I feel like big schmucks. Our eyes have been opened to true giving. From State Troopers to the hospital and everyone in between, lots of toys and stuffed animals have entered the hospital ready to make a childs' eyes sparkle. So why do we feel like schmucks? We never saw that vision. We never visited a hospital and got to see the joy in a child's eyes from something simple. Wow. What a nice thing to do - and we've never done it. It's funny how being thrown outside your 'box' makes you see things you would never have seen. I guess sometimes we kind of draw an imaginary line around ourselves and don't have the time or creativeness to venture out of it until we 're absolutely forced too.

Ashleigh has received some pretty nice gifts so far, but I gotta tell you her big sister is really the one racking up. She already thinks this is the best Christmas ever.

Ashleigh is doing very well so far on her feeds. She's started to wretch more over the last two or three days but she's had food pumped into her 24 hours a day. She wasn't gaining enough in 20 hours so they felt the need to go to 24 hours. After talking with her primary pulmonologist today, however, we are going to go back to 20 hours a day continuous with 1 bolus feed during her 4 hour break. That doesn't get her quite the same volume she was having with 24 hour feeds, but it does provide a pathway for her to get back to a more 'natural' way of eating. Hopefully they will be a little more patient with this scenario and give her stomach adequate time to expand to accommodate larger bolus feeds. We're starting at 60 ml tomorrow - which she did well with last. Much more volume than that caused her to wretch and get red in the face before.

Her heart rate has been elevated for the most part for the last 30 or so hours. We haven't figured that out yet. We feel like we've narrowed it down to a fairly small number of things but each of those requires a different treatment so we'll have to watch and see (unfortunately) to see how and what she does. Hopefully no matter what it is her body will have the capability to fight it off.

Her two upper middle teeth are close to coming in. I think they are in, but Michelle thinks they have not broken through yet. We thought initially that this is what was bothering her, but she has not been running a fever and Tylenol did not cause her heart rate to go down. We're hoping it's not a urinary tract infection. Generally a fever accompanies those. Her urine output has been normal as well and it does not seem to bother her when she urinates.

Her secretions from her trach have been more (volume wise) over the last two days, mostly thin secretions, just more of it. Because of that, she's been wheezing off and on. Michelle kind of feel like (at least for now) that this may be why her heart rate is up some. If she can't breathe as efficiently and has to work harder, her heart rate would naturally be higher. Kinda like walking up hill all the time. That could be caused from her teething but it's more likely that she's picked some type of virus. Last time she kicked the adeno virus to the curb right quick. Hopefully (if she has anything at all) the path will be similar.

At any rate, I'm sure Ashleigh would rather have two new teeth for Christmas instead of a virus. Come on Santa, can you cut her some slack?

Thank you all for your continued prayers. We tell everyone we see and talk to, more than anything, those are what mean the most to us. It makes us feel humbled, yet somehow stronger, when we know so many people are still praying for Ashleigh's health. Still praying for her to come home healthy - and soon. Thank you all.

For those celebrating Christmas, I wish you each a very Merry Christmas.

December 19, 2006 (evening)
Dad: As anticipated, Ashleigh's now on 35 ml/hr. Her pulmonologist went up to 33 ml/hr yesterday and she did okay with it so up to 35 ml/hr we went today. I expect her to gain a little weight every night for now. Her volume is now a little more than she had before surgery, but less than she had when she was vomiting so bad a while back. Once the vent weans come into play, her gaining weight will likely be much more sporadic.

We talked about vent weans a little yesterday. Her pulmonologist still wants her to have 4 to 5 nights of good gains before weans begin. That's good. But also frightening. There's not much else to wean except her PEEP, which is what helps keep her airways open. The big question is 'are her airways developed enough?' At one point, we talked about taking her off the vent for 10-15 minutes at a time. Ashleigh's practitioner mentioned several hours at a time yesterday. I'm thinking 10-15 minutes makes a whole lot more sense initially. I also strongly suggested that we get an x-ray before any weans are made. I feel like having a reference point makes sense based on the history of how her lungs have reacted in the past. Her pulmonologist was opposed to the idea and basically laughed at me. At least two of her pulmonologists are fairly convinced she's ready to come off the vent. I'm convinced she's ready to try it again. But I'm apparently more conservative than some when it comes to the process. That's perfectly okay. I'd much rather (and hope I do) look like an idiot for being wrong than to not have a reference point if her respiratory stature changes after we try weaning her.

Michelle and I are unofficially trained to do just about everything now - from feeding her to trach care/changes and everything in between. We have not been handling her breathing treatments and chest therapy (it helps break up any secretions in her lungs) but know a lot about it because we've seen it done so many times. Our goal is to know as much as possible when we start training (if she must come home on the vent). The new date is late January to start training. We are hoping to do what is called the 'fast track' training which takes around two weeks. All that is based on whether or not she will have to come home on the vent and when the patients in front of us complete their training.

Ashleigh is now at the age where she definitely knows what's going on in her environment. When someone comes in the room or leaves the room, she knows it. And if you're the last one to leave, she knows that too. She likes for someone to be in there. She apparently likes to be around people. Can't say that I blame her. I would have long been stir crazy and bored silly by now. That should be a little easier to handle once she's home (I think anyway). For now, the nurses are having to deal with it when we're not there. Sorry about that.

As most of you (who read this regularly) know, I try to keep this about Ashleigh. But every now and then - you know - I can't help it. Now is one of those times. Along this journey we've had help in specific areas and at specific times. We are so very grateful and thankful to those who have helped us thus far, and are grateful for the ones we know we can count on as this journey continues. If I didn't believe before that God still hears and answers prayers (which I strongly believe - how could I not after this journey), this week has shown it to me again. I'll leave it at that. God answers prayers. Sometimes (okay, often times for me at least) not in the way or time that we ask for or anticipate. But that's one of the really cool things about prayer though. Our life is gently woven into the lives of others through prayers being answered, and others into ours. We never know what it will look like, but before our eyes a tapestry made of generosity and gratitude is miraculously and intricately created.

Thank you all for continued thoughts and prayers. Those are the most important gifts anyone could offer right now and we truly cherish them.

December 17, 2006 (morning)
Dad: Ashleigh turned herself over on her tummy today! She's been trying for a while, but she did it twice today. She was smiling and happy for a few seconds after she did it, then got mad. Kind of like "Hey, I did it. Yeah! Hmm, now what? Uh oh, I'm stuck." It's one more milestone in her book of many. She even had company today to witness it. I've pretty much decided she's a 'ham' when visitors are around.

Her respiratory stature has been good over the past week. She had a few days where her secretions from her trach were a bit on the thick side, but today they seemed to be thinner. The flu and RSV are rampant in the hospital. We are wiping everything in her room down with the Saniwipes (kills just about everything) daily or more. This is exactly why we wanted to be home by Thanksgiving. But we're not, so we just have to hunker down and try to keep the bugs away through the season.

She's not really gaining weight on a regular basis yet. Some nights she's up, some down. More up than down, but still not a solid up trend like she was on before. My guess is her pulmonologist will up her hourly feeds just a little more this week. She's at 32 (ml/hr) now and I think I remember hearing her max is 35 (ml/hr) for her weight. That would give her about another 60 ml per day. It would also get her closer to her total daily intake prior to surgery.

We'll have to see about weans. Last we talked they really wanted her to start gaining weight first. I prefer that. Otherwise, she'll burn far more calories than she has extra - hence, losing weight.

Thank you all for your continued thoughts and prayers. We really do appreciate them.

New photos posted.

December 16, 2006 (morning)
Mom: On the 13th, Ashleigh lost more weight (I think it was close to 40 grams). Since then, we decided to stop the bolus feeds and do continues feeds from 12 pm to 8 am and turn it off for four hours to give her tummy a rest. Between yesterday morning and this morning she has gained a total of 55 grams. So she is getting back up there which makes Jason and I happy. We will try the bolus feeding again after her weight gets back up and a little more time for her tummy to heal after surgery.

We had our meeting with the doctors Thursday. The biggest decussion was weight gain and bolus feeds. Another reason we stopped the bolus feds was that she was wretching at 60 ml and the doctors want to get her up to 90 ml (and eventually 120 ml). I didn't like seeing her do that not to mention the fact that her heart rate got to 180 and sometimes above that. I think they were pushing her to hard and to early after surgery. The doctor said she will need to get used to it eventually.

She got her second round of the RSV shot (this is 2 of 5) and a flu shot. She wasn't happy about that at all (can't say that I blame her though). So they gave her tylenol every four hours for 24 hours. We did find out yesterday that there is an epidemic of the flu going around in the PICU. They are making everyone who works on that floor get a flu shot. Thank God she didn't have to go there after her surgery.

If Ashleigh keeps gaining weight over the weekend her doctor wants to start trying to wean again on the ventilator. Of course, that's a whole other worry for me, I know they need to see what she can do.

Thank  you for your prayers. We especially need your prayers for her weight gain, eating by mouth, tolerating bolus feeds and ventilator weaning.

December 12, 2006 (afternoon)
Mom: Well this morning when we called to check her weight, she lost 100 grams. The doctor didn't seem to concerned about it, he said that was probablly still fluid from the surgery.

I bolus fed her 70 ml by gravity over 25 minutes this morning at 11:00 am. She did okay until the last 10 ml, then started to cough and wreched some. Her heart rate got over 200 and was very upset. We burped her (that's where you leave the tube going to her stomach open to air and it makes bubbles to relieve whatever air/gas she may have) for about 20 minutes. It seemed to help some, right after that she went fast to sleep.  The 2:00 pm feeding was better than the first, but she was still uncomfortable. By around 4:30 pm she became quit mad, fussy, couldn't calm her down. The nurse practitioner and I talked and decided to cancel her 5:00 pm bolus and drip feed her  at 32 ml/hr for two days to get her over the pain of surgery.

Her nurse (well let me back up, Ashleigh hadn't had any pain meds since 5:00 am this morning) gave her Motrin at 5:00 pm. She was still uncalmable, fussy, turned beet red. Anyway we ended up giving her Tylenol with Codine. After about 15 minutes she was back to the old Ashleigh - smiling, bouncing everywhere, singing, talking.  She really went too long without pain medicine. I hated to give her something other than regular Tylenl or Motrin but you could tell something wasn't right. I feel bad looking back, yesterday she acted the same way just not as bad (the poor baby was in pain).

We are suppose to have our biweekly meeting with the doctors either on Thursday or Friday to discuss the plan now that Ashleigh is done with surgery.

Please continue to pray for her pain, the discomfort of eating bolusly. It got quit discourageing watching her not tolerating the feeds and wreching, but had to press on because 70 ml isn't where the doctors want her to be (they want her to be at 120 ml). All this just seems so far out of reach, yet I know deep down she will get there eventually. Sorry for the babbling.


December 11, 2006 (morning)
Dad:  We reached 'full' feeds this morning. From 4 am to 8 am she was getting 35 ml/hr which is what she will max out at for right now when she's on continuous feeds. She'll get three bolus feeds today (11:00, 14:00, and 17:00) then go back on continuous feeds from 8 pm to 8 am again.

Her nurse ended up having to give her one more round of morphine yesterday afternoon. We were hoping to get by without it, but the timing on her Tylenol and Motrin didn't work out. She hasn't had any more through the night and hopefully will not today either. If so, I think her pulmonologist will reduce her rate back to 6 (where it was before her surgery).

She's done well with her feeds so far. She gained about 15 grams last night and I think that was real weight. It took her a few days to get rid of fluid. If so and that's her 'real' weight - she's reached 10 pounds!

December 9, 2006 (afternoon)
Dad: Ashleigh just had her first post-op poop. Her bottom was healed and ready for it, but her dad was not. I heard some rumbling. Then some more. We've been waiting, so of course I was excited. I was clapping my hands and saying "good girl." Then I heard more rumbling. So I checked her diaper. As I was doing so, it began to overflow. More rumbling, more overflow. Excitement turned to near panic. My mind went from "good girl" to "containment."

It took a few minutes and help from her nurse to contain it and get everything cleaned, but it's a good sign that her plumbing is working like it should.

December 9, 2006 (morning)
Dad: We've officially started feeds. Yesterday afternoon she got a 30 ml bolus of pedialyte. She tolerated that well, so they started a 10 ml continuous feed of breast milk with fortification (a bit after 8 pm). Every four hours they went up by 5 ml/hr. Today they are going to stop her continuous feeds and do two bolus feeds (about 2 and 5 pm). Then at 8 pm tonight, she'll go back to continuous feeds. So they overall plan is to do bolus feeds three times during the day and continuous feeds at night. The volumes will vary for now based on how well she tolerates feeds, but so far so good.

They took the two stitches (that held the gastrostomy button in place) out this morning. She was not very happy about that.

She has done very well from a respiratory standpoint. All of her vent settings are back where they were before the surgery except her rate. Because she is still getting some morphine (now as needed) they do not want to lower her rate yet. Morphine lowers the respiratory rate.

I am extremely appreciative for everyone's continued prayers.

December 7, 2006 (7:45 PM)
Dad: Ashleigh is back in her room now. She is in pain, but she is doing great. They will be giving her morphine for pain management (for the next 24 hours at least). She can get a dose every 4 hours if needed. They gave her a dose just a little while ago. Her heart rate was creeping up. Her heart rate is still a bit elevated (understandably) and her blood pressure is elevated right now.

From a respiratory standpoint, she is doing awesome. She is back on her home vent. She is normally on a rate of 6, right now she is on 12. That is the number of breaths the ventilator gives her each minute. She is on a half liter of oxygen flow. They took her back down to room air earlier, but she was still not quite able to hold her oxygen saturation up just yet. A half liter is not bad. They will probably be able to wean that down as she becomes more alert. She is breathing over the vent, which means she is breathing on her own.

She looks really good. Just a tad swollen at this point. Her drain tube is starting to drain old blood (which is normal), but the sutures and incision areas look really good so far.

She is still very "out of it", but wakes up every know and then, looks around for a familiar face, and then goes back to sleep.

I can't tell you all how much we appreciate everyone's thoughts and prayers.

December 7, 2006 (4:05 PM)
Dad: Ashleigh's primary surgeon just came out and told us both procedures have been completed.  She did well through the surgery.

Both procedures were done laproscopically, and she was able to get the gastrostomy button (versus the tube) that we will use to feed her.

Three sutures hold the fondus (top of stomach) around the esophagus and four sutures hold the esophogus in place. Her surgeon said it looked "pretty."

We are waiting to talk to anesthesia to see how long they anticipate her being in recovery and the process for pain management for the next 24 (+/-) hours.

We cannot see her while she is in recovery, but we do not expect her to go to the ICU. This way the same nurses that are used to caring for her will care for her after recovery.

Thank you so much for your thoughts and prayers. I'll post more when I get more details.

December 7, 2006 (2:55 PM)
Dad: No updates yet.

December 7, 2006 (1:50 PM)
Dad: Ashleigh just went back to prep for surgery.

December 6, 2006 (evening)
Dad: Ashleigh's surgical procedures are scheduled to begin between 1 - 2 PM (Central) and should take about 2 hours.

So far we still have a green light from all parties involved. At least four surgeons came around to see her this afternoon/evening at different times. I'm not sure what to make of that. We learned this evening that Ashleigh's reflux is pretty severe, a 4 out of 5 kind of scenario. Maybe that's why. Don't know.

I'll try to update the site as soon as I can tomorrow after surgery.

Endless thank you's to everyone who has committed to keeping Ashleigh in their thoughts and prayers tomorrow - before, during and after surgery.

December 6, 2006 (afternoon)
Dad: Ashleigh's Upper GI is done. As anticipated, she got really hacked off and vomited. The doctor doing the procedure did make a comment about Ashleigh having reflux. If it was that easy to tell, I wonder why we didn't do that procedure three weeks ago when we started discussing the fundoplication? I was not there so I did not get any more detail than that.

Her secretions for now are not as thick as yesterday. So at the moment, we're still scheduled for surgery tomorrow. We don't have a time yet.

December 5, 2006 (evening)
Dad: Over the last two days Ashleigh's bottom has broken down again. We think part of the culprit (or at least what variable changed) is her teething again. Those top teeth are giving her grief. Yesterday she went through a whole lot of diapers.

Tomorrow they will do a upper GI for the surgeon to review ahead of the surgery. They'll pull back her TP line to her stomach, inject barium, take x-rays and then put the TP line back into her intestines. She will not like the tube being moved and chances are she'll yak up the barium. We didn't find out about this until late this evening. I understand the need for it, but that doesn't make it any less aggravating for Ashleigh's sake.

The surgery is still scheduled for Thursday. Ashleigh did have some thicker secretions (from her trach) today, so we're hoping that she's not getting any kind of infection or illness. She may be a little dehydrated from using the bathroom so much yesterday. That would make her secretions thicker if so. We'll see how she does through the night and go from there.

She's still not quite at 10 pounds just yet. We hoped that she would be before surgery. There's nothing magical about it, we just thought that would be a good milestone to hit before then.

She got to spend a little time with her big sis this evening. She was so excited. She was kicking her legs like crazy and pushing herself up the bed, arching her back, bouncing - and smiling the whole time. It's pretty evident she loves her big sister. And just watching her is the best medicine available for Michelle and I.

We've had some very exceptional and inspiring feedback from lots of people over the last few days and week. We really appreciate it all. I can't begin to describe how much it recharges my battery hearing from and just knowing that others care so much about a child who is not their own. It's awesome. Thank you all again for your continued thoughts and prayers for little Ashleigh up to, through, and beyond this upcoming surgery. We should know by tomorrow evening what time the surgery is scheduled for.

December 4, 2006 (evening)
Dad: Ashleigh's surgery (both procedures) are scheduled for Thursday. We will not have a time until Wednesday evening. Thank you each for your continued prayers.

December 4, 2006 (day)
Dad: Here we are. December. It's so true that time stops for no-one. At some points of our life we wish it would hurry up and go by. Other times we wouldn't mind freezing the clock and just soaking it all up. To me, part of this journey has been a lesson about time. That no matter who we are, we all still have the same amount time in the day. And no matter how great or threatening things look, days still come and go. We never have control of time, but we do have opportunities where we can work with it or against it.

We have decided (after much thought, deliberation, discussion and prayer) to have both surgical procedures performed. The gastrostomy tube was not a huge consideration. The fundoplication was. The surgery will be this week unless something changes. We talked with the surgeon this past Friday who will be performing the surgery. We had two pages of questions and other questions that spurred from his answers. There were answers that made me cringe and answers that put me at ease. Michelle and I continued to talk about it through the weekend and last night finally came to the same conclusion. This is not the perfect solution. But for me at least, right now, there is no perfect solution. So we do what we feel will be the best choice from the options we do have - or we can do nothing. 'Doing nothing' does not help us reach our goal of bringing Ashleigh home healthy. Our hope is that this surgery will 1) drastically minimize the risk of Ashleigh aspirating fluid into her airway/lungs, and 2) allow Ashleigh to begin the process of learning to eat by mouth again. If all other variables remain constant and if we achieve those two objectives, her overall health will improve. That's the big picture perspective.

There are many smaller issues that are still troublesome. One of the most difficult things to accept is that this will not address the root problem of her vomiting. It will literally prevent her from vomiting, but will not address why she is vomiting. That to me is a very hard pill to swallow. The fact that she will still very likely be retching adds a level of risk to her health. But the problems that retching can cause are still a little less important (or less likely at any rate) than the attempt at protecting her lungs - especially for the next year or more as she develops. I could fill an Atlanta phone book with other variables, weights, concerns, benefits, fears and justifications. But what we do now is pray that this is the right decision and let our Creator carry us into the next step of this journey.

Thanks to all the parents with children who have traveled this path and offered their first hand experiences, thoughts and prayers. Your collective feedback really helped us in making a decision.

The surgery is planned for tomorrow or Thursday of this week. I'll post it as soon as I know for sure.

As you can imagine, Michelle and I would certainly appreciate your thoughts and prayers about Ashleigh's upcoming surgeries. That these are the right procedures at the right time. And that these would provide respite for Ashleigh in the coming days and that long-term they would strengthen her body and welcome healing.

Thank you all for walking with us.