January 2007

January 29, 2007 (morning)
Dad: Ashleigh has done pretty well with her four hour vent weans, though she is showing that it's work and she's tired after them - especially in the evenings. Today she is doing a straight six hour stretch off the ventilator. We'll meet again with her care team this Wednesday to discuss what fork in the road to take. We should get moved into a little larger room this week as well in prep for whatever training we have to do. It's all very exciting though we are very focused on trying to keep her well during the process. Any unexpected setbacks, including hospital infections and illnesses, could easily change the plans.

She was slobbering yesterday so I guess some of the teeth that were close to breaking through are now working their way through. Naturally, her stools have been more loose and more frequent but some of that is, assumedly, from the C-diff and the antibiotics that are being used to treat the C-diff (yes, it causes diarrhea too).

Ashleigh's journey so far has certainly been far from what most would call normal, literally from birth, to death, to a spirited and moving life in eight months. She is a miracle and I pray that she continues to fascinate us, bewilder us, impress us and show us that, yes, life is fragile, life is volatile and not always fun, but life is something that can not be predicted, evaluated, or given up on.

In the medical world they have a term for what Ashleigh has journeyed through: non-viable. How disheartening it is for me that we as humans have gotten cold enough to dehumanize life. That we have come up with terms that present themselves as, perhaps, politically correct, but do nothing more than trample the human soul by detaching it from the physical body. My daughter's life, and every other life, is viable no matter how grim the situation appears to us as humans, no matter what our related experiences say and no matter the statistics. I said a long time ago that I would never give up on Ashleigh. How awesome it is that most of those that have cared for Ashleigh in one way or another (especially her primary pulmonologist) have the same attitude. If we could incorporate that attitude back into the depths of the medical culture (well beyond the nurse and physician level) then maybe these terms and efforts to compromise the value of what life really is would vanish.

Thank you for your continued thoughts and prayers for little Miss Ashleigh. Today my prayer is that it will be soon be clear for us and her care team which path is the best for Ashleigh's immediate and long term health - no matter how convenient or inconvenient for everyone else involved, including myself.

January 26 2007 (evening)
Mom: Lets see, since Monday we found out that Ashleigh does have border line high blood pressure. The docs said her bottom number was a little on the high side. She will be on blood pressure medicine for 6 months to see how she will do. The Renal doctors said it may be because she is in a hospital, with people coming in and out messing with her, doing tests and so forth. So hopefully after she gets out, things settle down and with her being in her own cozy home - that it will go away.

I didn't mention last week that the GI docs wanted to send her stools to be analyzed to see why she has so many stools in one day. She tested positive for C-diff. This is a hospital acquired infection. So she is on antibiotics for this, I think for 10 days to clear it up. And that makes three antibiotics for now.

We met with the her primary pulmonologist doctor on Wednesday. It went pretty good. The plan is to see how she does with her four hour weans twice a day and then by Monday she will go to six hours straight through once a day if all is well. Next week her primary pulmonologist will make a decision of whether or not she may be ready to come off the vent in the next month to two months. If not, we'll start training. If so, then the next step may be a little less clear. We're kind of looking at March (to come home) either way - hopefully.

Ashleigh has had something going on over the last few days that has been causing her heart rate to be high. It could be teething again. Most signs point to that. Today she was better than yesterday, so maybe it was a quick phase. We've been messing with her feed volumes again so that could be the culprit (or part of it) too.

Now the big news. Today she did two four hour weans! So today she was off the ventilator for eight hours total. She was so worn out tonight, we're guessing she'll probably sleep well tonight. Little girl worked hard today. It will be interesting to see if she gains or loses weight tonight.

We should know by this time next week what the plan is. Either way is fine with us. What ever she needs - we're there. Thanks for everyone's continued thoughts and prayers. We really appreciate being able to lean on everyone for spiritual support.

January 22, 2007 (evening)
Mom:  Ashleigh did her second wean around 2:00 pm and did pretty good. She started to get a little tired toward the end and was getting fussy but all in all she did very well.

Still haven't heard anything regarding her blood pressures but hopefully the docs will report something soon.

I didn't notice until tonight that Ashleigh has a tooth on her bottom left side that has come in and another on her left top side. The girl will have a full set of teeth before she turns 10 months old at this rate.

She lost another 10 grams last night. She is now getting 105 ml on bolus feeds. I don't really expect her to gain any weight tonight either considering she is working a lot more to breath.

We still ask for your thoughts and prayers especially through these trach collar weans.

New Photo

January 22, 2007 (afternoon)
Dad: A quick update to let everyone know Ashleigh did GREAT on her two hour wean this morning. She even did physical therapy while she was on the trach collar. After two hours, we put an "artificial nose' on her trach for about ten minutes to see how she would tolerate that. The artificial nose filters the air and retains the moisture for her lungs, simulating what our noses and mouth do. She did well on the nose too. It was really great to hold her with only two wires to worry about. Look ma, no tubes!

Thanks everyone for your continued thoughts and prayers. We will continue on two hour weans (twice a day) until Thursday, then we will go to four hour weans twice a day. Michelle and I have no nerve endings remaining and our stomach's are now permanently pretzel shaped. Just thought I'd let you all know how we're doing too.

January 21, 2007 (morning)
Mom: So sorry for not updating the web site again. It has been a very busy past week.

Ashleigh started weaning from the vent for an hour twice daily since Thursday. She has done very well. Friday she didn't do as well due to having a cold and pseudomonas in her trach area. The doctor started giving her gentamicin aerosol treatments twice a day for five to ten days depending on how she responds to it. By Saturday she was in a lot better mood and breathing a lot better. On Monday she will be weaned for two hours twice a day. Talk about mine and Jason's stomach being in knots.  Today she was bolus fed and weaned at the same time and she fell asleep.

Her bolus feeds are up to 100 ml now three time a day. Then she gets continues feeds from 8:00 pm to 8:00 am of 38 ml. They are wanting to go up on bolus feeds by 5 ml every other day until she reached 120 ml. Her weight hasn't been that great. She stayed the same some days and actually lost 10 grams this morning.

Her kidney test showed no scaring and it looked normal (Glory be to God). Her blood pressure monitoring is done and the nurse practitioner said everything looked normal with it but we would have to talk with the renal doctors to find out more about the test and where to go from there.

We're thankful that everyone's thoughts and prayers are more consistent than the updates lately.  : )  Tomorrow is another big step - two hour weans.

January 15, 2007 (evening)
Mom: Where do I start, Ashleigh had a good weekend. Her trach collar weans have been really good. I can't tell you how awesome it made me feel to see her breathing on her own. Up until today she has been doing 15 minutes twice a day. Today she weaned for 30 minutes two times, this will go on until Thursday then she will go for an hour twice a day. The pulmonologists on call this month (which is also her primary doctor) said he will go slow with her, slower then he would with the other kids because of her history. He is still on the fence with her whether or not she will come off due to her clamping down when she gets really mad. Her x-ray that was taken Friday morning turned out really well according to the doctor. He said it even looked less hyper inflated, but didn't know if the x-ray was taken while she was exhaling or inhaling.

Her weight gain is kinda stagnant. She has only gained 20 grams in the past two mornings but lost some previous to that. I think it's because she is working harder to breath. The doctors think she is just going to go up and down, that we have to look at over all weight gain for the month. I guess so, it just seems strange to me that she was gaining anywhere for 10 to 40 grams each night before we started weaning her ventilator settings. She is up to 90 ml for her bolus feeds and we have also gone from two bolus feedings to three bolus feedings per day. Thursday she will go to 95 ml three times a day, but with more time in between bolus feeds. You would think this was Thanksgiving again they way they are stuffing her like a turkey.

Her thyroid test that was done on Friday morning came back normal.  So now they are going to send her down to radiology with nuclear medicine running through her blood that will reach her kidneys to see if there is any scar tissue from her previous UTI's. This will tell them if this is causing the high blood pressure and high heart rate. Her blood pressure is also going to be monitored for 24 hours per renal doctors.

She got her last flu shot yesterday with tylenol on board for the following 24 hours. She seems to be handling it well. Her leg is still pretty sore.

She has a new game she likes playing now. She will squint both her eyes and smile and wants you to repeat it after her. It is hilarious.

Her bottom is so much better now. The nurse practitioner spoke with a surgeon and he recommended Critic-Aid. It's for people with incontinence. This cream should have been shared with us a long time ago. Her bottom got better within two days. She still has some raw spots but it's not red and meaty looking or bloody any longer.

Sorry for not updating in a few days. Hope everyone will continue to pray for Ashleigh. Specifically for her ventilator weans (and overall lung and airway health) and for what ever reason she's having high blood pressure - whether it be her kidneys, heart or otherwise.

January 11, 2007 (evening)
Dad: So the trach collar this evening didn't really go as well. She was a bit fussy going into it, and she got really, really mad close to 10 minutes into it. Her respiratory therapist put her back on the vent right at 10 minutes. By that time she had started to desat (not oxygenate her body). She only got down to 89 before the vent was hooked back up, but she was drifting down. It was primarily because she was so upset. It kinda spiraled down once she got upset. Her pulmonologist came in a few minutes after that ended up taking her off again. After about 10 more minutes she was ready to get back on the vent. According to her pulmonologist, she sounded pretty good when she was not mad. It seems pretty clear to me she was not in the mood for it, but whether that was the whole reason or not - I don't know. We will take an x-ray in the morning (after mom requested) and see where to go from there. Another trach collar trial is scheduled for the morning.

Her bottom seems to be healing but is still very bad. Raw flesh, bleeding. And very tender. There have been some discussions about the cause. They range from her mom's breast milk to the various antibiotics she has been on. For now, we're going to try getting rid of Prevacid (shouldn't need that anymore!) and trying Culturelle (intestinal probiotic). Historically she's required simethicone (mylicon) to help break up gas caused by the Culturelle. So that was added back in the mix too. We are also trying a skin protectant ointment  for her bottom. It's supposed to create a barrier to help keep the skin dry and clean. The conversation, believe it or not, goes much deeper than all that, but I primarily mentioned it because it obviously does have an effect on her disposition.

We ended up having an impromptu meeting this afternoon after the trach collar trial. We found out that (from the study this morning) her left ventricle (heart) is thick. They believe this may be related to her blood pressure, which has always seemed to be 'on the fence.' The question still is why. So down the rabbit hole we go. Thyroid tests, nephrotologists checking into kidney functions, etc. We're not very excited about starting another rabbit chase, but this is not something you want to ignore either. Especially when the signs have been there since early on. We're only just now starting to get some of the puzzle pieces together.

We also found out Ashleigh still has MRSA. They will not make any further attempts to get rid of it. So now the term is "she is colonized with it." Yay.

Tomorrow we will go to 85ml on her bolus feeds. Still every two hours. On Monday, they want to go to three bolus feeds (still every two hours) of 85. Overall, she's doing pretty well with the bolus feeds now. Michelle and I think she is over the surgery and that is allowing her stomach to work/stretch a little better.

We were both bummed out this evening. After a good morning, lot's of stuff piled on through out the rest of the day. But we'll just continue to take it one day at a time and try to make the best decisions we can to reach our destination - Ashleigh home healthy. Thank you all for your continued thoughts and prayers.

I've also added a photo of Ashleigh on her trach collar this morning.

January 11, 2007 (morning)
Dad: Whew. Ashleigh did excellent on her trach collar. It did not even seem to phase her. Very good first step.

We got started a bit late, but once we got to it she went the full 15 minutes. Her sats never dropped below 97 (100 is the best). Her nurse and respiratory therapist kept listening to her and only heard small whistles off and on. She did seem to cough quite a bit. Her respiratory therapist suctioned her a few times while she was on the collar.

Her blood gas was still good this morning. A little higher than Monday, her CO² was 40.7. Still right in the middle of the normal range (40). They do not want to do an x-ray today.

Of course, we have another trach collar scheduled now for this afternoon at 5:00 PM. For 15 minutes again. I think it was pretty clear Michelle and I were more nervous about all this than she was. And we will be again at 5 this afternoon. That will be a daily thing now. On Monday (if all continues well), they want to stretch it out to 30 minutes. Sigh.

Her pulmonologist wanted another echocardiogram of her heart, so that was done this morning as well. When questioned about it, they said it was because her heart rate always seems to be a little high. That's very ironic, because we always question that and we're told it's because 'she's active'. If I had a dime for every time we've heard "she's active", I'd be on the list right below Warren Buffett. Now out of the blue they decide to have it checked out. Seems odd to me, but I'm not seeing all the data. Maybe it's been higher than normal lately. I don't know.

Regarding her feeds, we're up to 80 ml on her bolus feeds. We're going to 85 ml tomorrow, still twice a day. On Monday, we're going to three bolus feeds of 85. Still two hours apart. At some point soon we'll span them out three hours apart.

Thank you each for your prayers this morning. We really, really, really appreciate them.

January 10, 2007 (evening)
Dad: Tomorrow morning (January 11th) at 9:30 AM we will take Ashleigh off the ventilator for approximately 15 minutes. To us, she is beginning to show some signs of not being ready. But we'll take it a minute at a time and pray that it does not harm her lungs in the process. We ask that you all will do the same if you don't mind.

January 8, 2007 (evening)
Dad: I was reminded that I had not added the photo from Christmas when Ashleigh flipped over on her tummy and went to sleep. So it's on the photo page now. Sorry. I guess I got side-tracked! Thanks for the reminder!

January 8, 2007 (afternoon)
Dad: Have you heard the phrase "it's on now"? Probably as most commonly heard just before the first punch is thrown at a late night brawl. Well, it appears to be 'on' - and I guess 'now'. Today, Ashleigh was weaned to from 5 to 4 (her ventilator's PEEP setting). This is not the first time, so we'll just have to c-l-o-s-e-l-y monitor how she does. Speaking of phrases, we've discovered (at some point along the way) that the phrase "she's fine" can mean different things to different people. See, for us, 'she's fine' means everything is just as it was last time we entered her room. Her heart rate is the same, she's sat'ing the same, her blood pressure and temp are good, her disposition is the same, her breathing treatments are on time, her diaper is clean, ...and the list goes on. All those things we have learned to subconsciously scan every time we enter Ashleigh's room. To a nurse, however, sometimes 'she's fine' means they have not had to break out any emergency equipment. Which is certainly a good thing, but still there's a level or two, or three, of information depth we're yearning for. All that to say... it's likely no matter how detailed any nurse goes into the details, we'll still be looking for more this week.

This week will be very stressful for Michelle and I. We understand the necessity of trying to wean her (and are giddy that she has reached this point) but man-oh-man the pressure is on. We have no way to know what her body's reaction will be. And though 'unknowns' in our life have become more common than 'knowns', it does not make them any easier to wrestle with. My anxiety level is creeping up with every breath. So I'm just going to take a second here and remind myself to breath... okay, better.

So on Thursday if she's doing well with the PEEP of 4... I can't say it. If she's doing well... breath, man! If she's doing well of a PEEP of 4 the'regoingtodoatrachcollartrial. There. I said it. Deep breath. A trach collar trial. For 15 minutes. That's when the room get's quiet because the ventilator isn't doing anything. That's when they unplug the ventilator circuit from Ashleigh's trach and hook up just humidity to keep her airways moist (the job your mouth usually does). That's when the world starts moving in slow motion. I'm bringing velcro with me Thursday. I don't trust that the floor is clean enough for me to pass out on, so I'll just velcro myself to the wall. That way if I pass out, I'll just kind of dangle for a while until I'm ready to rejoin reality. Seriously though, wow, what a step. How far she has come. From where she was back in July to the tentatively scheduled trach collar.

She seemed to do better this time with a PEEP of 5. She didn't sleep more than normal. Her disposition has been a little of the cranky side (some), but her rear end is raw again so it could be partially do to that. At any rate, we're doing plenty of things to her on a daily basis that would make me far more cranky than she is. So we just have to watch the details. And remember to breath.

Thank you all for your prayers, emails, posts and cards. I hope you will remember Ashleigh in prayer this week. It's a big week. It could be awesome. It could be devastating. It could be just kind of average. Michelle and I don't care if she needs the vent for now. It would be great to come home without it. We feel pretty confident she won't need it forever no matter. Most importantly though, we don't want any further damage to be done to her lungs in the process. I hope we have made that abundantly clear to her care team. We've certainly tried.

January 5, 2007 (evening)
Dad: Even though it's only been a few days since Michelle updated last, it seems like quite a bit has happened. We did meet on Thursday with her care team. We discussed the weaning process, how her feedings are going and goals for those, time frames, and the expected politics that come with having a loved one in a hospital.

From a respiratory and ventilator standpoint, we talked about the reasons and strategies for where to go and when. Her primary pulmonologist feels like now is the time to try to wean Ashleigh again. We are still on track to start training at the end of January or first part of February so we need to start finding out if we even need to go through that training process. Naturally, it is very nerve racking and initiates anxiety attacks to even think about giving up what has become our 'breathing security blanket', yet so very delighted that Ashleigh has come so far - all that and more at the same time. We don't know for sure which direction she will lead us in, whether she still needs the vent for now or not. Michelle and I are extremely comfortable with Ashleigh coming home with or without the vent. That's not an issue for us. Whatever she needs right now, that's what side of the fence we'll be standing on.

We did get an x-ray slipped in on Thursday before we made any vent changes. I have not seen it though we were told it looked exactly the same as the ones from October. Her upper right lobe is still enlarged. We are assuming based on all her other stats that this is 'normal' - for her - for now. So after we knew that, we went down on her PEEP from 6 to 5. That was sometime Thursday afternoon and so far she seems to be tolerating the wean pretty well. On Monday, we will get a blood gas and see where her CO² stands. If it is good, then we will go down to 4 from 5. That's where she said she had enough last time. A setting of 3 is what you and I walk around with generally. So once we get to 4 (and if she tolerates that) the next step is take her off the ventilator for periods of time. It doesn't sound like very many steps or very large steps - but let me assure you that from my perspective these steps are so large you need a ladder to get from one to the other.

As Michelle mentioned, we've started doing two bolus feeds back-to-back now. So at around 10 am she gets a bolus (currently at 75 ml) and then two hours later, at noon, she gets another bolus with the same volume. She is getting through it but that last 30-40 ml makes her very uncomfortable. Retching accompanies this some, generally more in the second half of each feeding when she is most full. Sometime next week we have discussed going up to 80 ml per bolus. We'll just have to continue to see if she adapts to these two feeds back to back.

I don't think we've mentioned that she has cut her top two teeth. So now she has two on the bottom and two on top. She'll be chewing her passy to pieces before you know it. She knows exactly what that box with a glass circle on the front of it is. As soon as we get the camera out (to get a snapshot of her pearly whites) she clams up. I guess she gets that from me. I'm not much on having photos taken of me.

Her bottom is on the red side again. She has two fairly large spots that are really broken down to the point of bleeding. We feel like now that she has cut her teeth it might have a chance to heal.

Her third round of antibiotics to rid the MRSA ended today. That's another large culprit in having a red bottom. Antibiotics always make her bottom break down. She unfortunately started back on the less powerful, or maybe I should say, more focused antibiotic, tonight - macrodantin. That's for her urinary reflux. My guess is they'll probably do a culture on Tuesday (plus or minus a day) to see if she's kicked the MRSA to the curb. I hope so.

She got the two remaining immunization shots today. They put both of them in one leg today. Her other leg still has quite a knot in it from the first round.

That seems like a lot for two days, huh? Perhaps the weekend will go a little more quietly. At any rate, it appears Ashleigh is making good progress. Sure there are still uncertainties. And sure Michelle and I are nervous about where we go from here. But I'm still pinching myself for the fact that I'm able to type the words "making good progress." How awesome is that?

This past month for us has been non-stop and nearly overwhelming outside of the hospital. Some good, some not so good. But we find comfort in prayer, ...and in progress. Not just our own prayer, but in the prayers that we know many of you pray for Ashleigh each day. Your prayers carry us so much further than any multi-vitamin I know of. We really appreciate them and hope that you will continue to pray for her health and healing.

January 3, 2007 (evening)
Mom: Ashleigh had a pretty good day today. She started wheezing some by around 2:00 p.m. After her breathing treatment though it got better, but tonight she started the wheezing again. The nurse said she would let the doctor on call know just in case they need to give her breathing treatments more frequently. Of course I usually call all during the night so we'll see. Hopefully this is because of the shots she got Monday. To think she will get three more Friday. We might just have to hold off until things get better with her lungs and I surely don't want them to mess with her ventilator.

She gained 40 grams last night. So now she weighs about 10 lbs 7 oz.  She did well with her bolus of 75 ml. Tomorrow they want me to bolus feed her twice instead of once. The poor child, she is miserable after the bolus. She doesn't even want to suck on her passy.

Tomorrow is our meeting with the doctors. I hope Jason and I can express (in a well manner, especially me) how concerned we are about the weans. I know I need to leave that in Gods hands and trust that things will work out, but I am still scared to be truthful.

Thank you for your continued prayers, especially now.

January 2, 2007 (evening)
Mom: So sorry I haven't updated in a while. We had a good New Years'. The nurse let us come back to the hospital around 11:45 p.m. Of course Ashleigh was asleep and the nurse threatened to hurt us if we woke her up.  Jason and I were appreciative to spend it we both our girls.

Ashleigh is up to 75 ml now on her bolus feeding. She has done pretty good. Her heart rate still gets to 175 but comes down fairly quickly. We are going to bolus feed her 75 ml again tomorrow and they want me to start with that twice a day instead of once a day. That's fine with me, but I don't want her to start losing weight again. She has been gaining anywhere from 5 grams to 40 grams a night.  She is now 10 lbs. 5 oz. give or take and was 7 months old on the 31st of December.

Monday morning was a big day for her, she got a gas (which was very good), blood work done (this is done every first Monday of the month), and finally received two shots out of five for her six month shots. She was given Tylenol for 24 hours which ended today around 1:30 p.m. She has been a little fussy today (probably from the shots). She gets the other three shots Friday. Next week she will get another round of the RSV shot and the Flu shot.

The pulmonologist that was on call today wanted to lower her PEEP from 6 to 4. I asked that we wait until we have meeting so we can discuss further what the plan is going to be. My thought is they went really low in October and that is when her right lung over expanded and was pushing on her heart.  I don't want the same thing to happen again and want to make sure they have good justification for weaning again. The meeting is Thursday with her primary and one other pulmonologist.

Jason and I talked to the person that does the home vent training. We asked if we could do the fast track which takes two weeks instead of six weeks for the normal training. She said we wouldn't take long to train. We already do the trach change and cleaning, feeding her through the pump and now we are starting to do her breathing treatments (of course with the respiratory therapist in there). We still have to learn how to change Ashleigh's g-tube should it come out and any emergency situations. So maybe we will be home by February. Keep your fingers crossed and lots and lots of prayers.