Updates

home [hom] noun - a place where something flourishes, is most typically found, or from which it originates.

New Update (February 25, 2009)

Yesterday morning we had the honor of talking with the mom of a 5 month old at the hospital right now. Her little boy, Conner, has been there since birth except for a short time this past Christmas when he was able to able to go home briefly. His struggles have been different than Ashleigh's but has had to fight every day - just like Ashleigh and many of the other babies and kids there.

Conner's doctors say he needs a trach and his parents are on the fence - just as Michelle and I were before that surgery for Ashleigh. It's hard enough to have to believe that your child can't get well on their own. To think of them having a piece of plastic stuck in their throat is just a huge slap of reality across the face. It takes time to absorb. Time to get over that hump where you can even begin to think that it actually might help. It's (obviously) not mine nor Michelle's place to say what Conner needs. But we can say for sure it's a very tough decision. After talking with Conner's mom yesterday, we both feel very confident in his parents making the best decision for Conner.

Both Michelle and I can attest to the power of prayer in not only helping make the right decision, but in carrying out the results of that decision. So we're pleading with everyone to keep Conner and his parents in your thoughts and prayers too.

As far as Ashleigh goes, I noted in the last update this week would be interesting. It has indeed been interesting. Ashleigh is worse than she was when we last updated. The antibiotics are not doing the trick. She's started wheezing now (not a good sign for her), so yesterday we added steroids to the arsenal - trying to help her body stave off whatever it is that's attacking. We think allergies might be exacerbating her breathing issues (which means more meds to help with that) - so we're just trying to balance all these meds on her already problematic tummy.

Last night was a rough night. Hopefully she's getting closer to turning a corner for the better. It's always dark before the light.

We have an appointment later in the week to see how her blood pressure is doing. They will do a renal panel which means drawing blood. Not looking forward to this one at all - especially right now.

We certainly appreciate your thoughts and prayers for Ashleigh and Conner.

February 21, 2009

Ashleigh went to the GI doctor this week. It was a hard (and long) day. There were some insurance problems with the first doctor we were scheduled to see, but were very fortunate (thanks to our nurse and pulmonary doctor at Children's Hospital) to be seen by another doctor the same day (phew). That made for a l-o-n-g day with no nap for the little princess. We talked about lots of possibilities and the doctor we saw thinks he may have it narrowed down to a handful of things. Unfortunately for Ashleigh - proving (or disproving) any of them requires testing ...of blood, stool ...and a gastric emptying study. The blood work was done at the doctor's office and raised everyone's blood pressure (to be very mild about it). I'm going to step on my soapbox for a second. Nurses and phlebotomists out there - if you're not used to getting blood from ped's - hand the needle to someone else. Otherwise, one day, your luck will run out and some parent is going to put you flat on your back. I'm just saying... (okay, stepping of the box now)

So the blood and stool were 'delivered'. The gastric study is scheduled for a few weeks out. So we really won't know anything (for sure) for several weeks I guess. Some of the possibilities range from treatable by antibiotics to who knows what. Kinda leaves a lot on the table, but we're up for it.

Ashleigh's pseudomonas is flaring right now so Michelle brought her to the pediatrician's office yesterday and she's back on antibiotics once more. Her secretions are lots heavier and she's just a tad on the testy side. You may remember this is kinda how things got started last May when she got so sick. Hopefully we've (okay, Michelle) caught it early enough this go round to stave things off before it gets more difficult to control.

The next week or so should be interesting! Appreciate your prayers.

February 14, 2009

Happy Valentine's Day everyone.

Not much new news since the last post other than she is handling her food a little better. We're giving her smaller 'doses' of formula more frequently and that seems to be helping. She's not retching nearly as much. We have not tried to feed her by mouth. She is playing with food just a little, but still not much interest.

Ashleigh has a GI appointment next week, so we'll see if this doctor can help us get things back on track.

Yesterday, Ashleigh's OT wanted to try the Passy-Muir valve. That's the little valve that fits on her trach. It allows Ashleigh to breathe in through the trach but closes when she exhales, forcing the air to travel past her vocal cord. It helps her speak more easily and helps increase her ability to swallow - which will help when she (someday) actually starts eating.

I captured her on video this morning singing her abc's with the Passy-Muir on. We just had to get this movie out for everyone to see. It's pretty incredible.

Thank you for your continued thoughts and prayers.

February 4, 2009

Okay, so I know this is the first update since the conversion from stone tablets to paper. What can we say? We're slackers.

There are several volumes I could write about all that has transpired between the last post and today - some okay, some good, some not so good. If I had to sum it up, I think the old saying "two steps forward one step back" would serve well enough. Okay, maybe two and a half steps.

Ashleigh had her vent clinic appointment today. We met with her team including her pulmonologist, pulmonary nurse, ventilator specialist, nutritionist and social worker. This was a scheduled appointment, but if you know anything about Ashleigh's pulmonologist, you know just because things were scheduled does not mean they were routine. This man loves curve balls.

Ashleigh has been having some digestive problems over the last two months so that was certainly a topic of interest for everyone involved. She was doing so great for a while. She was starting to take food by mouth, doing pretty well with her tube feedings. Growing a little. Gaining a little. Not as much as she needs to catch up - but progress was looking shiny and new. Then almost within a few days all that came to a not-so-shiny screeching halt. Her eating by mouth dried up even with trying to 'strongly persuade' her with anything from the standard two-year-old "I want that" arsenal.

Prior to her appointment today, we've stepped through a few of the early steps for treatment - Zantac and now Prevacid. She also had a digestive study a few weeks ago called (oddly enough) a retchogram to see if her fundo is still in place and to see whether reflux is part of the picture. And to try to suck up because we haven't posted in an eternity - I'll offer a history lesson. Ashleigh has always had digestive problems. Grade 4 (highest being 5) reflux was diagnosed before her fundo surgery. The fundo was an effort to keep her reflux from ruining her esophagus ...and making life a little more desirable. And if you're taking notes - that surgery was on December 6, 2006. Okay - class dismissed.

Back to today. Her pulmonologist looked at the images of Ashleigh's belly and feels like her fundo is still in place. This is a little weight off our shoulders in a way because if it had shifted or somehow worked its way loose - the chances that we would have to go through another surgery to correct it is high.

We talked through her symptoms, possible changes, different formulas, and tried to get a good angle on what the root problem is. In the end, we're increasing her Prevacid and off to a GI specialist we go. Until then, we'll keep her foods a little on the light side to decrease her retching. There goes the weight (and height) we've worked so hard to pack on!

Her growth has been another continual question mark. We've been seeing an endocronologist off and on for a while now - siding to the 'wait and see' of Ashleigh having to start on growth hormones. Her pulmonologist thinks its time to go ahead and do the test. I'm very hesitant to begin this process until we know for sure what's going on with her digestion. Regardless, we're going to have to consider doing the initial test which we're told is not very pleasant.

Maybe the best news has to do with what has traditionally been Ashleigh's biggest weakness - breathing. During our last vent clinic visit, her pulmonologist told us we could start letting her sleep a night or two off the vent each week. (She's been doing well off the vent during the day and on the vent at night.) We have not been very diligent about pursuing that guidance. We got called on it this go round though - so we're going to have to do better about it. She's ready. Maybe this year will be her year to rid the vent and the trach. Cheers to that, eh?

Post Birthday Party (June 1, 2008)

Thanks to everyone that came to Ashleigh's party. It went well and she got lots of neat stuff - including more Barney (which she can't live without currently). Ashleigh was not feeling well at all - but frankly better than she has been doing over the past week.

We think it all started with some kind of virus. The virus had some strange reactions, including making her limp on her right leg and a controllable, but high, fever for about 4 days. We're pretty sure the limp is related, that's what the doctors we spoke with tended to side with too. Right as she finally started breaking her fever on Wednesday night we started really seeing some respiratory issues. Thank goodness her vent clinic appointment was Wednesday. Dr. Makris and his nurse picked up on her wheezing very early on. That was Wednesday afternoon. By Wednesday night she was wheezng more and her oxygen saturation was dropping by a few percentage points. We've battled a few days here and there with her sick at home, but the reality came crushing in when we spoke by phone with another pulmonary doctor (on rotation) in Birmingham Friday night. I described everything that was going on and he said if she did not improve over the next day or two, she may need to be admitted to the hospital. We've been able to keep her home so far - so that was disheartening. She made it through her party and this morning she's feeling better. Her secretions are starting to slow up and thicken, and we are not getting blood up every time we suction her now. Hopefully we can stay on this path for the next few days while she recoups and lets this nasty stuff get dried up.

So for now she is not weening at all and we are doing her breathing treatments twice as often as we normally do.

Backing up to the appointment on Wednesday - we are going to be able to discontinue her breathing treatment at 1 am once she's over all this stuff/well again. That will be like gaining an eighth day of the week. We're going back to Birmingham close to the end of the month to do a sleep study and bronch the following morning. The sleep study will help determine how well she sleeps off the vent, then the bronch will give us an indicator of how her airways are maturing and if she has any granulation tissue. If that goes well, we are going to start weaning two nights a week while she is asleep. It all seems a little far way again right this second. Hopefully her being sick right now won't take long for her to recover from. It took well over a month back when she got sick in November.

She's growing (in height) but has leveled off on her weight for the most part. We are going to increase her food volume and in addition add microlipids to her diet. Hopefully by the time she's six we can have her in a forward-facing car seat.

Thank you for your continued prayers - especially this week.

Birthday Party Time!

Ashleigh's vent clinic appointment was rescheduled to this Wednesday (May 28th). We'll post an update after her appointment -or- you can come to her birthday party Saturday (May 31st, 2008) and find out first hand. She'll be 2!

New Photos are available - Winter 07 and Spring 08

Update since January (2008)

Ashleigh went to Dr. Ashraf (Endocrinologist) on February 19th. Gave a whole lot of blood. But the bottom line was there was nothing wrong with her growth hormones. Dr. Ashraf does want to wait until Ashleigh turns two to see if she would have a dramatic growth or not. If not the doctor wants to look in to maybe giving her the growth shots for four months just to see if that would help her to grow upwards. So we meet with her again on June 12th.

Went to Dr. Wall (blood pressure) on March 27th. Her blood pressure was 86/54. Excellent!!!! So apparently she out grew her dose earlier and the new dose is working well for her. I still questioned why she has blood pressure issues. The doctor said it could be a realm of things that she really doesn't know. But hopefully in time, she will grow out of this. (My fingers are crossed and lots of prayers). We go back to Dr. Wall on July 31st.

We were supposed to see Dr. Makris (pulmonary) on April 23rd, but they called and rescheduled for May 7th. We are looking forward to this one. We want to see what Dr. Makris has planned for her. As far as getting her off the vent by this summer and what the plans are. I promise I will update as soon after the visit to let everyone know.

Since about the middle of March, Ashleigh has just blossomed. She is getting around so much better. Running all over the place. She tolerates being on the HME so much better than when she first came home. This helps her to go outside, go places without being connected to all kinds of wires, and actually enjoy life in general like a little child should. Just a month ago, she actually said da, da. And then said Dad. Talking about her daddy getting teary eyed. No she isn't saying ma, ma or mom. But thats okay, it will come later, hopefully. She weighs about 18lbs 3 oz. Weight and height is still a little slow, but I'm sure that will be discussed when we see Dr. Makris. We are continuing to work with occupational therapist (Terry Woosley). Ashleigh swallowed some water from a straw and didn't freak out. I will upload a picture from where we were at a restaurant and she actually sucked from a straw and drank a little bit of water. This was extremely exciting for us. One step closer but still a long process.

She has had a rough time still with ear infections. Since March she has been on three antibiotics. I'm sure the discussion on tubes will come up and very well may have to go through with getting them. We will let you know as we know.

Before I close, please pray for Avery Ann. She is currently at Children's Hospital fighting for her life. Not much hope according to the doctors. We knew of her while we were there, but never got the opportunity to meet her or her family.

Avery Ann's website

I will update again after Dr. Makris visit. Please continue to pray for Ashleigh as we try getting her off the ventilator and various other things. It will be a long process and a scary one. Thank you for your continued support and prayers.

Month of January (2008)

Hope every one had a fabulous New Years. Ours was good. We went out to eat, came home and was in bed by 9:00. It was my night, so when then time hit 12:00 I went and kissed Ashleigh and Emily and went back to bed. Again so much better than being in the hospital.

Around January 5th, she started running a temp of 104 degrees. Long story short she was diagnosed with strep. I though for sure it was another UTI, but the doctor said sometimes with strep is sends off toxins that make little kids think they have a UTI. I thought that was interesting. She was put on antibiotics (amoxil). Well of course that didn't set well with her stomach and ended back at the doctors office to re-check urine and throat. Her tonsils were still quit swollen and enlarged. She was put on another stronger antibiotics (biaxin). We ended up calling Dr. Makris also during all this because every time we suctioned her, it was bloody secretions. He said it was probably due to the high fever and it drying her out. He suggested to take her off the Atrovent (MDI inhaler) for a couple of days and make sure we give her plenty of water. That did the trick. We have yet to give her the Atrovent back. So she is know down to two inhalers instead of the three.

Saw Dr. Wood (Pediatric doctor) for 18 month check up and another synergis shot. She still only weighed the same, but was probably due to her being sick earlier. She got all shots and was testy the whole day but was better by the next.

We were finally able to go to Louisiana this past weekend. Jason's family lives in Covington. We left on Friday mid-day and returned Monday. It was nice getting back and seeing family and scenery, of course the food is a given.

Ashleigh is walking, running, getting into everything. She likes to take herself off the vent, plug her trach, and move air past the trach to hear herself talk. She says AHHH and BAAA. We are trying to get her to say DA DA, but she hasn't done it yet. We even videoed her to send to Dr. Makris so he could see it. Every time Dr. Makris puts the Passy Mur on she pops it off. She has even gotten to the point where we can hear her laugh at times when she is being silly.

Right now we are having the early stages of those terrible two's. She pulls Emily's hair and likes to slap. Of course we tell her no-no and even pop her leg or hand, but it doesn't phase her. She just looks at us for a moment and goes on about her business. She is really quit the character and we enjoy every bit of it. She is just such a blessing and continues to strive.

Please continue to pray for Ashleigh, especially going to the Endocrinologist on February 19th. I hope she can continue weening off the vent and to be completely off by this summer. Thank you again every one. Please let us hear from you.

Month of December

Sorry it's been so long since an update. We had a wonderful Christmas-!! So much better than being in the hospital. Ashleigh enjoyed opening up all her presents and especially playing in the Christmas tree. We went to my brothers house (Michael), that was the first time the whole family had been together for two years almost. Lots of tears that night for the many fortunes and just being thankful.

Ashleigh went to see Dr. Makris (Pulmonologiest) with Vent Clinic on Dec. 12th. He was happy with her progress. Because she had a respiratory infection before Thanksgiving, she still wasn't up to the eleven hours off the vent. She was only off about four hours a day then. He told us not to rush her to just take it slow through the winter. We were happy to hear that. Her weight to height ratio wasn't on the same curve as he would have liked it, so he referred us to an Endocrinologist. This checks her growth hormones to see if anything is wrong there. I thing and hope that she is just short due to the kind of start she had as a baby and being in the hospital. She doesn't have a whole lot to work with either. A lot of my family is short and Jason's side is short as well. Her food was bumped up from 40 ml's at night to 47 ml's. We have only gotten her up to 44 ml's. She has a rough time with it during the night. Her weight at was 17lbs 12-oz.

We also saw Dr. Wall her Nephrologist (kidney/blood pressure doctor) in late December. We had to go up on the blood pressure medicine, her blood pressure was high again this visit. So instead of meds three time a day we got it down to twice a day but more of it. Hopefully this is something that is minor and not going to be an issue for the rest of her life. We asked Dr. Wall what could be the cause. Her response was the stress in the NICU and having arterial lines and just the whole experience in the hospital. Dr. Wall said she will probably grow out of it, but would just take a little more time.

Month of November

Ashleigh started pulling to breath while off the ventilator last Sunday, by that night I ended up giving her breathing treatments every 3 hours. She hasn't been able to ween this past week at all. Her pulmonologist put her on nebulizer Gentamicin breathing treatment twice a day for fourteen days. She already had an appointment with her pediatrician on November 8th to get her synagis shot. Dr. Wood said she was still wheezing and she put a call into Ashleigh's pulmonologist at Children's. The end result was to put her on Cipro (oral antibiotics) and Orapred (steroids) and to keep doing the nebulizer. We had plans to go to Louisiana for Thanksgiving, but we canceled it due to Ashleigh be being on all this medicine and not having much of an immune system. Being around different people and in a different environment would make it hard. Sure we are disappointed but it's better to be at home then back in the hospital.

We finally got Ashleigh into see an Occupational Therapist. We have been on this particular therapist waiting list since March. She had her first appointment on October 26th. It went pretty good. She basically just wanted to get to know Ashleigh before she starts working with feeding. The therapist said it would be a long process.

We have some other good news for a family at Children's from Prattville. Their son has been in for two years and he is finally getting to come home on December 11th. What a Christmas present for him and his family. It will be Ashleigh and his first Christmas at home. Hallelujah

Please continue to pray for Ashleigh in getting better and staying home this winter.

Month of October

October 12th, 13th, and 14th we went to Pensacola Beach. Jason had to go due to work so the family tagged along. Ashleigh seemed to enjoy it, but it was very windy and we didn't want to take a chance of sand getting in her trach area. We did go down to the water for about 5 minutes to get some pictures then hurriedly came back to the hotel.

About a week or so after she developed a cold along with myself, Jason and Emily. That week wasn't pretty, we were all tired, ill, and didn't feel good. Ashleigh was put on antibiotics and steroids to help open her lungs up (she was wheezing and thick secretions).

Halloween was good. Ashleigh had her Halloween dress on and greeted kids at the door while Emily went trick or treating. I was hurting all that day with stomach pains and by the next day I had emergency surgery to remove my appendix. Jason took care of Ashleigh day and night by himself for several days before his parents came in from out of town to help out. We are back on track now.

Month of September

September 3rd, Ashleigh had her 15 month check up. Of course, with that check-up came along the shots and one of them caused her to have fever for four days straight and very fussy. She weighed a little over 16 lbs and is still not on the growth chart, but what do they know.

She has been approved for the Synagis shots again this winter, so she will get those once a month starting in October and ending in April. She will also be getting the flu shot along with her sister, myself and I guess Jason. It's the price we pay to try to keep Ashleigh well as much as we can. I expressed how concerned I am with Ashleigh getting through this winter with her pedatrician. She just told us to keep her away from the public as much as we can and wash our hands often.

We took her to Childrens to see her pulmonologist September 17th. She had been running a fever, runny nose and watering eyes over the weekend. She was just kind of gazing out into space. He said her chest sounded tight, so she was put on steroids, antibiotics, and Zyrtic, She had blood work done to see if she was allergic to anything and sure enough it came back saying she is allergic to milk products. We can't determine though if it's the whey or if it's actually milk intolerance until she gets older to do the scratch test with an allergy doctor.

She had a VCUG done in Birmingham at Childrens on September 27th. This is were they do a cath and put nuclear medicine in to check her urinary reflux. You probably don't remember but back in August she was graded at stage three (five being the worst). Well ladies and gentlemen, SHE NO LONGER HAS IT!!!!!!. Her renal doctor said she has grown out of it and we can take her off the medicine she was taking for it. We just have to watch and make sure she doesn't get another UTI, If so we can keep her off it for good. The doctor did want to up her blood pressure medicine though, but we told her she has been having good one's, and the only reason it wasn't good that day is because of the VCUG - which is very painful. We go back in December to reevaluate. They may take her off the blood pressure medication then if all appears well.

All in all she has had a few bumps but is doing well. She is up to 11 hours off the vent. She is weighing in at 17 lbs. She is making about five steps on her own without holding onto anything before she crashes. She is at that stage where she has bumps and bruises on the head and legs. People probably thing we are beating our child. If they only knew how far that is from the truth.

We had a nurse for day shift for about a month and we no longer have her. The agency is still looking for us another one. That's a story all in itself. We won't subject you to the lengthy details.

All in all, September (this year) has been a big difference from September (last year). There have been a few small steps back but more steps forward. It's still unbelievable that a little over a year ago she was fighting for her life. Now she's acting like a true red head when she doesn't get what she wants.

Thanks for continuing to pray for Ashleigh. One of these days I think (when she gets to be a teenager) we may have to ask you to start praying for us!

Week of August 20th. It seems Ashleigh's eye teeth are getting serious about coming through.

Somewhere around Monday/Tuesday Ashleigh starting drooling a bit. That's quite unusual for her, she's generally fairly dry. We guessed maybe her eye teeth because she has most of the rest already. By Wednesday, her secretions in her lungs were producing more water than a hurricane over sea. Well, not really - but you get the point. Michelle decided by Thursday that it was time to be sure. Ashleigh's level of irritability has reached the "dangerous" level.

A trip to the pediatrician's office confirmed it was a tooth issue. From that trip, because she has done so well in weight gains over the last several months, we were able to increase her Tylenol dosage. Amazingly, that difference reduced the irritability level from "dangerous" to "acceptable". We are now able to see the teeth attempting to protrude. We can see two so far. She's been in a bit better mood - even without Tylenol. We try to reserve that for when it's really needed.

Her secretions have remained white and clear through it all - no yellow or greenish tint. And that's a very big deal for her. She's still off the ventilator for about 10 or so hours a day right now too. So even with the added secretions, a "tad" moody, and in pain - she's still kickin' tail from a respiratory stand point. Go Ashleigh!

We've decided to swap our nursing around a bit this past week. The nursing at night all in all has been a train wreck. Michelle and I have gotten Ashleigh's evening routine down pretty well. Frankly having a nurse there got to the point where it disrupted our schedule and Ashleigh's sleep. That's primarily because there was never one nurse that worked long enough to gain some comfort in taking care of Ashleigh and for us to learn to trust the nurse either.

So this week we started a '3 days a week during the day' shift. We'll have to play it by ear and see how it works but we're hoping that having a nurse here during the day will be more helpful than disruptful. Michelle and I will just keeping alternating night shifts. We've gotten used to it and so has Ashleigh.

To help with that, we're moving Ashleigh's room next to ours. We're putting in a door between the two rooms so Michelle and I can start to actually sleep in the same bed again. (I know, insert wise cracks here.) Once she's moved over, we'll be able to see her equipment and hear everything from the comfort of our own bed. (Right now one of us sleeps in Ashleigh's room every night depending on who's night it is.)

We've been working on sign language a bit more frequently. Because she's going to have the trach in a while longer, we need to start expanding her communication. She let's us know the basics pretty well, but we need to continue to grow her vocabulary.

Thanks to everyone for the comments from the last post. We really appreciate your encouragement and continued prayers.

Week of August 13th. This past week we made a trip to the hospital for a bronchoscopy.

We originally had surgery scheduled for tubes but decided to cancel last week. The second thing they were going to do while she was sedated was a bronchoscopy. Tht involves the insertion of a very small lighted camera down her airway. Ashleigh has to have that done about every six months to check for granulation tissue around her stoma - where her trach is. New skin growing there could cause her stoma to get blocked or make it difficult to get a new trach inserted.

Most everything we learned from the bronch was expected. But we did get a very exciting surprise. Her trachea (the large airway that goes from the neck down to the bronchus where the airways split) is getting stronger. The malacia isn't as bad there now as it once was. So the vent is needed now just for her smaller airways. This is very promising. It means the plan set in place over a year ago is progressing. Perhaps not as fast, but progress is sweetest when measured by the smallest steps.

The revised plan is to take another look next spring. So she'll be on the vent until at least then. During the day we're able to keep her off the vent for over 10 hours now, so she's making good progress there and is mostly on the ventilator at night and evenings right now. Any infection could change that but for now she's doing very well with that course. We have her pulmonologists backing to work her up to being on the vent only at night - as she can tolerate. It's a balancing act for sure, but every hour that she can thrive off the vent helps her become stronger and decreases the tissue strain caused by unnatural breathing.