I'm So Bad!

I've been such a bad blogger. There is stuff going on, I swear I will post about it soon but I've just been so busy (recovery from surgeries, doctors appointments, mid-winter break, Evie's everyday star attraction, birthday, chaperoning Adrian's field trip to Chinatown (So fun!), researching and trialing scrapbook software etc.). AND I'm in the process of trying to redesign Ainsley's blog (it's been on the top of my to-do list a very long time) so hopefully soon we'll be able to finish that and release it in the next week or so. There I said it, so now I have to do it, right?!

Today is my day with "nothing to do". I'm at home with Ainsley (no school for her on Fridays) and I am working on capping her and at the same time trying to spend a little time learning the new software I'm SO excited about (more about that later) but she's pulled that darn cap off 5 times in the last hour and a half. Big surprise! I really should be getting ready for Evie's big birthday event anyway (no it's not over yet). This year is simple, it's no Harry Potter Party but we are excited and it should be fun. She's having her 5 closest friends over for a sleepover party with their American Girl Dolls. So I'm not likely to get a lot of rest anytime soon. Unfortunately all this activity is making me tired and I just haven't' had the energy to stay up late blogging these days like I used to. And it doesn't help that little miss has been needing a lot of night time suctioning. After 3+ years I forget that waking up 5 times a night makes one tired! Oh yeah, duh! But I promise good things are to come soon!

9 Years

9 years I've been a parent to this beautiful girl. If I close my eyes I am almost transported back to that day, the day my whole life changed, the day she was born. There was snow on the ground and it was quiet and still almost as if in anticipation of the heaviness of the moment, as we drove off to the hospital at daybreak. I thought I had some idea of what becoming a parent would mean. I had no idea. How can you ever be truly prepared? And then I went on to have a second child. I was a seasoned parent. I knew what I was doing. After having two I thought I knew it all. Nothing could have prepared me for the birth of my third child and how much more challenging it really could be. I love being a mom. It's been an incredible 9 years of happiness but also pain. Motherhood is not for the faint of heart. You do what you must, the best you can, knowing that there will be times you succeed and times you fail, and the sacrifices you will make will be plenty. But the joy and love that children bring into your life makes it all worthwhile. And I wouldn't have it any other way.


The birthday girl opening her gift, a second hand American Girl trunk filled to the brim with a vintage Kirsten doll and all her clothes and things.


Ainsley was jealous. She's turning into quite a doll girl herself. She was begging to hold Kirsten and you can see she is getting to be quite expressive these days. I think she's officially just started pining for her own American Girl doll.

Now we are off to celebrate the end of Evie's 9th birthday with dinner at the Rainforest Cafe and Volcano cake for dessert. It's tradition. I really can't believe my baby girl is 9. I feel I'm passing out of the stage of having little kids. It's made me a little sad but I'm sure I'll bounce back.

Pulmonary Follow-Up

We saw Ainsley's pulmonologist for a follow-up today. I was expecting this to be a quick appointment. Just a quick, "Okay, things look great, come back in 6 months," kind of appointment. But he is a great doc and spent a lot of time talking with me. He brought up the Cincinnati chest CT from March 2008 that was the cause for the bronchiectasis diagnosis and showed it viewed next to the new scan from December. The Seattle scan had more slices but he did his best to find comparable shots and it was obvious to me (untrained eye) that there was a massive improvement. This is not new news but it was nice to see it, but darn it, I forgot to get pictures. He again emphasized how great and unexpected this is because this condition is generally considered permanent. I still wonder if what they saw back in 2008 was due to being hospitalized for RSV one month prior to the scan. The other possibility is that she was aspirating stomach content and the lungs just improved unexpectedly once she got the fundoplication.  I just want to add that Dr. D was the doc who recommended pursuing a fundo more seriously and therefore, in my mind, is responsible for a HUGE improvement in quality of life for Ainsley and us (of course credit also goes to the surgeon who skillfully performed the operation).  Those first two years when we were constantly on guard to protect her airway from damage due to vomiting were incredibly stressful. So I love this guy!

We talked at length about Ainsley's Monday surgery findings. And he assured me several times that I couldn't be in better hands with our current otolaryngologist, that he is one of the best. And if Dr. I has been ambivalent about performing certain surgeries it is a sure sign that there is reason to be so. He said he would like to talk to Dr. I after our March follow-up appointment, which is great, because after today I feel that Dr. D would be able to give good input when considering our options during the decision making phase.

After describing what happens when Ainsley cries with a PMV or Cap on he thought it sounded like collapse above the trach or, maybe as Dr. I said, due to the narrowing of the glottic area (vocal cords). A lot of pressure is generated during coughing or crying and so it also makes sense to him that things "shut down" in either place, or both.  He actually felt that the cricoid split would not put her lungs at risk, so long as the cords weren't moved too far apart. And he said that actually it could improve aspiration because the cords would no longer be so close together.  So that makes me less nervous about this surgery. We'll see, in March, if Dr. I's ambivalence has been replaced with enthusiasm for the cricoid split. Or perhaps he'll decide on some other course of action. Dr.D also said that sometimes really growth is the best thing because a very small difference in airway size can have a seemingly disproportionate positive result. So we may be asked to do more waiting.

I was pleased that he assured me that capping is a good route to get her ready for the possibility of decannulation, and furthermore if we try really hard but are unsuccessful with capping then that is also good information. He listened to her lungs with the Cap on and said there is a little pressure. And you can see it isn't "easy" for her. There could still be some swelling, gosh the surgery was just 4 days ago, so we're to give it a week and then gradually work more aggressively on capping. Of course we're to keep a good eye on her to make sure she's okay (she does have a narrow glottic area so it probably won't ever be easy especially with the trach tube taking up a portion of her airway), but we are to try to let her work through the crying a little more than we have to see if she can get "used to it" and move past the difficulty.  It's good to know that from a pulmonologists standpoint that I don't need to be concerned about damaging her lungs by having her wear the cap despite turning red. Hearing on Monday that the cords don't seem to be as fixed as previously believed (due to the scarring) gives us the license to try capping with more confidence. So here we go....

My coaster is on the way up and after today's appointment I have hope that someday Ainsley may get this trach out after all. Although it will, most likely, require a great deal of patience.

Tonsillectomy Update?

Can you call it a tonsillectomy update when no tonsillectomy took place? Well, there is much to report.

1) Tonsils -Apparently her tonsils are now so small that he wouldn't remove them. He says he has only been in this situation a handful of times. The good: no painful recovery. The bad: there will be no improvement in her swallow or airway since there was no surgery done.

2) Adenoids- They were fairly large so he went ahead and did a partial removal (not full, since that tends to cause nasal speech in kids with low muscle tone.)

3) Her soft palate and uvula are very close to the wall of her throat. This is not good and worries him that she would develop sleep apnea if she were decannulated (during the day it's less of a problem). Our options: We could remove part of the soft palate and uvula. Yes, that's done. And no they don't put the uvula back after they reduce the soft palate. Apparently we don't really need the uvula and doctors in East Africa remove it routinely. Still that doesn't sound so great to me. Of course we could also try CPAP if it turned out that she needed it post-decann but my guess is he doesn't expect that to be successful. I wonder if this could have been caused by her craniofacial reconstructions because the advancement of the forehead causes the mid face growth to halt or slow. I don't recall them ever mentioning it being "too close" before.  I will ask the ENT at our next appointment if a mid-face advancement (which Ainsley may need at some point in the future to reallign her jaw and bring the middle of her face back forward) would do the same thing.

4) Tongue- Her tongue sits kind of far back in her throat. It isn't clear if it causes an obstruction, although it is possible that it contributes to the problems. But there isn't much that can be done for that if it turns out to be the case.

5) Granuloma - I knew she had a granuloma. In the past I think they didn't remove it, thinking there was no need, and that it would likely grow back. But this time he decided to remove it. Pictures are below. He is actually hoping that this improves her airway since this mass is no longer obstructing airflow. Of course it could grow back. They often do. This is a common side effect of having a trach.

Are you tired yet? I am, but WAIT there's MORE.

6)Collapse of the trachea - She has a fair degree of collapse on the wall of her trachea from the hole where the trach is. This is another common side effect of having a trach. He doesn't think it is severe enough to cause a big problem in itself but we aren't necessarily out of the woods completely for needing a laryngotracheosplasty(LTP).

7) Glottis- The glottic area is about 1- 1 1/2 sizes smaller than he'd like to see, at about a 4.5 It sounds more likely that she may need a cricoid split surgery to open the glottic area. The cords are still a little swollen but much much better than in the past.

8) Scarring- the terrible scarring and fixation of her vocal cords and arytenoids didn't look so back to him this time. So that's good. Really good. It explains why I've been hearing more varied vocalizations from her. The bad news is that it meant he couldn't laser anything to help her out. Or maybe that's good.

9) Ear Tubes- He did note an unusual cresent shape with a ridge on the front part of both eardrums. What this is/means who knows but he didn't think it should cause any loss of function. He didn't note any changes to the eardrums that would indicate a need for tubes and since tubes can cause problems he opted not to place them. That's fine with me, even though this past year she's been hit with a lot of ear infections. I'll hope that it improves on it's own.

10) Capping- He says she SHOULD be able to cap. That kids have to get used to it. But wait, didn't he also say she might need a cricoid split to open the glottic area??? I guess this means we are back to trying to cap. Probably unsuccessfully.

I don't know about you, but my head was spinning after all this. WTH does all this mean? .....The road to decannulation could be tricky with lots of potholes on the way. There are plenty of things that could go wrong. Is any of that a surprise to me? No. Where does this leave us? We will watch her closely over the next weeks hoping that the granulation removal opened up her airway quite a bit and that she has an easier time capping. Then he wants to see her for a scope while she's awake in the office in the next month or two to see what is going on while she is breathing. Then I guess we might start talking surgical options.

Upper Left: Vocal cords. Much more open than in the past.  Upper Right: The granuloma Lower Left: The granuloma area after removal.

Ainsley has been happily napping since we got home before noon. I expect her to recover fairly easily, especially since the tonsils didn't come out, but we have good pain meds just in case. There will be associated swelling with the procedures so I don't think we'll know how much it will help her for at least a week maybe more but be sure I will let you know as soon as I do.

Tonsillectomy (and All) Started

 

I'm so relieved we actually made it to this point! We arrived at 6:45 and went through all the pre-op stuff. It always takes awhile. I don't know why they bring you in so early only to have you sit and wait, just watching the door hoping it will open.

2 minutes after I changed her diaper she was sitting on my lap and peed, of course her diaper leaked so now I feel like I peed my pants. Joy. I've really gotta' get this leaky diaper problem fixed.

Now that Ainsley is older and more aware she gets really nervous around medical personnel so they let me bring her back to the operating room. It's amazing to see. But you have to put on a special "gown". BeUtiful. What a mom won't do for her child.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I think it was about 8:00 when they put her under. The procedures should take about an hour and quarter or so. Steve is meeting me here later, he had to get the older kids ready for school and drive carpool, so it might be over by the time he gets here. But likely recovery will take some time as she comes out of the anesthesia. But I'm hoping he makes it here in time to meet with the surgeon. I can't wait to hear what he has to say about her airway and whether or not she needs ear tubes. If you can believe it, this is all outpatient. So when it's done we go home.  I'll post another update when I can.

Meanwhile I'll be sitting in the cafeteria lamenting the painfully slow internet connection. This photo is for Karen, whose local children's hospital looks out onto the cemetery. I am thankful for the view as I kill time.

P.S. Anyone else hate this new blog post interface. I give up on fixing the allignment. And where is spell-check?!

Surgery Monday?

It's been a tiring week that I am thankful is drawing to a close. Ainsley has had a low grade fever that has had me very worried. Normally it would be the kind of thing you'd ignore. But since she is scheduled to go in for surgery on Monday I've been VERY nervous. Especially since this is not our first or second but our THIRD date. Despite keeping her home from school it looks like she caught a virus from me. Even though I avoided going out of the house as much as possible and used hand sanitizer every time I did.  Lady luck isn't on my side. Overall it seems to be quite mild so that is good, except it made it unclear if I should reschedule or not. The fear is that if it turns into a cough it would be bad for her recovery. It's not great to have your tonsils removed and then do a lot of coughing because there is already a risk of bleeding post surgery, especially given the large size of her tonsils. Of course we don't know if a cough might develop at the last moment but since it's Saturday and things are looking pretty good I'd say there is about a 70/30% chance she'll get her surgery. Earlier this week I was guessing the chances at 50/50% so thing are improving. But if she has a fever of 100.4 within 24 hours then we will have to cancel.We will keep you all posted. As it stands we will bring her in at 6:45 Monday to be evaluated. If they think she's okay the surgery will proceed.

Unexpected Visitor - Grief

I think this is the first time I've posted a link to another blogger's post. It's a surprisingly amusing post titled Grief by Heather Schichtel from the Hopeful Parents blog. I hope you read it and like it. I thought this was so well written and appropriate for today because....

I awoke this morning from a sound sleep to my dear husband handing me the phone. It was Children's Hospital returning several messages I left last week about getting in to see the Neurodevelopmental Clinic. It's a little challenging to wake up and have a conversation about neurological development while not letting on that you were actually...asleep.

After that conversation and multiple other calls about this, today, I'm still not sure I am actually any closer to having an appointment scheduled that might reveal the answers I'm seeking - will my child be able to walk, talk, function on her own in the world some day? I know in my heart of hearts that I am unlikely to receive anything more enlightening than the previous prognosis of "Ainsley is teaching us about herself. We'll have to wait and see." which is really just a fancy way doctors have of saying "We have no idea." But I have to try. Maybe another brain scan plus a clinical assessment from a neurologist or physiatrist would yield answers. I spent another good chunk of my morning trying to locate diapers that fit since she is too big (38" and 41lb) for size 6's,the largest size sold at the stores. For the past 2 months I've been working with a medical supplier, trying different options, and so far I'm just getting a lot of leaks, including a leak on the crib this morning.

I should be out of the house making the most of the time I have with our nurse here to care for Ainsley (she's staying home from school to keep her well for Monday's surgery). Instead I just can't get past dealing with all her medically related stuff. Blah! Then just now by chance I happened to read Heather's post and then realized that grief was visiting me today. But he knows I don't like him very much and was trying to quietly hide in the corner watching me this busy morning hoping I wouldn't notice him. All I have to say is "Grief, I've got the veggies for Ainsley's food cooked and as soon as I make her blenderized formula I'm outta' here and you are NOT welcome to tag along!"