Orthopedic Follow Up

Ainsley had so much fun bouncing this light up eye ball.


We're pretty thrilled that she's learned to throw a ball.


The current x-ray of Ainsley's hips.

Wednesday we had an x-ray of Ainsley's hips to see if they are still in the hip sockets, followed by an appointment with her orthopedic surgeon. The x-ray seemed to show they were still in place at this time however he is concerned that the sockets themselves don't seem to be forming around the leg bone as much as he'd hoped. He is afraid they will slip out over time either partially and cause pain or fully and cause an unusual and difficult gait.

Since Ainsley was going under anesthesia the very next day he checked to see if he could add on an arthogram to the surgery schedule. He injected her hips with dye and then watched to see where that dye traveled when her legs were moved in different positions. Unfortunately her left hip shows some movement of the leg within the socket which is likely to lead to dislocation.

Regardless her hip sockets are too shallow to hold her legs into place. The hope was that after her last hip surgery, spica cast and hip brace that the leg bones being fixed into the sockets would prompt the sockets to form more deeply in response to the pressure. Unfortunately it didn't work.

The next step is a rather long surgery where they take bone from another part of the body (hopefully the pelvice) and use it to reconstruct hip sockets by cutting the existing hip apart and curving it downward. At the same time he would do a double osteotomy where he cuts and reshapes her thigh bones. After the operation she would be fitted into a hip cast for 6 weeks. After the cast came off she would be in a hip brace for another 6 weeks. It is expected that it would be 2 months before she could put pressure on her hips because of pain. And in all the surgery is likely to take 6 months for her to recover from developmentally. Meaning in addition to not making gains, it would likely take 6 months for her to simply be doing what she was prior to the surgery.

He said that if Ainsley were a typical child there is no question we would want to move forward with this surgery. But he doesn't want to put her through this if she isn't going to walk. The analogy he used is a car with wheels out of alignment. If your wheels are out of alignment and you bring the car out occasionally for 300 miles a year the tires will last forever but if you drive a lot miles per year the tires are going to wear out quickly and cause a big problem. So basically we have to try to figure out if she's going to be a regular driver or just your Sunday driver. I feel more than ever that she will walk on some level, even if it's with a walker just around the house. He says that even if that is the extent of her walking that it would be best for her hips to be in place.

Dr. Song likes to pay careful consideration to a disabled child's development when planning a surgery like this. He wants to see her back in 3 months to do another x-ray. We'll see how the hips look and what she is doing developmentally and then we will decide what the plan is. She's been doing so well I too hate to set her back by doing this surgery now but I also would hate to wait until she is walking and then have to immobilize her. The mostly likely timing would be this fall or next spring, taking care to avoid being in the hospital during cold and flu season due to her airway.

I was really saddened to know that the previous treatments didn't work and she went through all that for nothing. And now to be faced with yet another major surgery is very hard to stomach. Ainsley has been through SO much already and she is such a sweet natured child, it seems so unfair. It's very unlikely but I'm still holding out a small amount of hope that somehow, some way, things will have improved slightly by the next x-ray. Although that may just make the decision that much harder. I think we're still in a little bit of denial that this thing is really going to have to happen.

First Ever Emergency Trach Change

When you have a child with a tracheostomy you have to always be prepared for an emergency. Everywhere Ainsley goes we always have to have a suction machine to clear the airway of secretions, saline to help thin the secretions if needed, a spare trach in case something happens and another spare trach in a smaller size in case the regular size won't go in. In addition we always have a resuscitator bag and tanks of oxygen in the car. Of course we have all these same supplies at home.

In the two and half years of living with a trach we've had 1 911 call due to RSV and two accidental decannulations. Fortunately in both those situations the trach, while there was no longer a patent airway because the trach cannula was not in the trachea the cannula was still ever so slightly inside the neck, allowing it to be reinserted fairly easily. Never in this whole time have we used our spare trach. I was surprised that today was the day.

We headed with our nurse to Children's Hospital for the swallow study. Afterward we have a few hours before our next appointment so we head to the toy store to buy a jumbo 14' jump rope for Evie's school auction basket. As we are leaving I see in the rear view mirror that Ainsley is asleep. Her color is good but she is gasping for breath every few seconds. She sounds a little dry but not particularly junky. I get out of the car and suction her because I don't like the sound she's making. The suction catheter passes through the tube but it feels ever so slightly tighter. I use an entire saline bullet to help thin the secretions but there is still a slight whistle sound. Since the catheter passes we head back to the hospital for her orthopedic appointments.

The strange sound is still there and I still can't get it to go away no matter what I do. I realize that I'm going to have to change the trach. I get it out of the bag and lube it. I pull the trach and the nurse puts the new one in. I push the obturator (device for inserting a tube) through the cannula and out pops this sticky secretion that had been stuck inside the cannula. It has a very unusual consistency like half dried Elmer's glue. I washed the old trach in the bathroom just in case I needed it later (even a non-sterile trach is better than no trach in an emergency).

We proceeded to our appointments and all was fine. Later that night when I suctioned her I got another glue like plug stuck inside the suction catheter. After thinking it over I realized the next day it must have been some of that barium she'd aspirated was mixed in with her secretions causing it to form like glue.

Thankfully things were better the next day and I'm hoping it was a fluke. I'd come to feel pretty sure I wasn't ever really going to need those spare trachs I'd been carrying around so this was a good reminder why.


See the sticky stuff on my finger?

Videoflouroscopic Swallow Study

Not too happy.


Even with bubbles.


The x-ray video screen. The black is aspiration of thin liquid.

Ainsley's has always been protected from truly aspirating food and/or liquids because her upper airway was virtually swollen shut. Even with an ineffective swallow the food and liquid couldn't really go down the wrong way because the swelling stopped it. After her Nissen Fundoplication in Oct. 2008 the swelling of her airway started to decrease. In November when I put some blue dye in her foods, she coughed some after eating and I found a tinge of color in her trach secretions. I stopped trying to feed her regularly for fear the food or liquid would further damage her lungs, since she has been diagnosed with bronchiectasis. Lung health is nothing to mess with.

Over the following months I would periodically try the dye tests again and things looked okay. However since her airway opened up some she has been less interested in eating and drinking. This concerned me that perhaps the reason is that she is protecting her airway. So I had been anxiously waiting for today's VSS to know if it was safe to proceed with feeding.

Unfortunately Ainsley's greater degree of comprehension has made it more difficult to perform tests and procedures because she isn't as likely to simply go with the flow anymore. She was immediately very unhappy when placed in the seat in the radiology room. And when they moved the x-ray machine into place she really started crying. Why this scared her I don't know. We had our nurse blow bubbles while I attempted to feed her the different foods that were mixed with barium (the substance that makes the food show up on the x-ray) while the speech pathologists viewed the results on the screens. The fact that she was so unhappy really didn't help but we did manage to get enough swallows to perform the tests.

The findings were better than expected really. She did okay on nectar consistency (think melted milk shake) and thick (like baby food). But she did aspirated on thin liquids.

What all this means is that she is okay to proceed with trying to eat baby foods as much as she tolerates. There may be times she may tire quickly and only be able to safely eat a few bites or other times she may do well and eat much more.

Her liquids will have to be thickened with a powder or gel that we were given. The good thing is that she coughed afterward to get it up out of her lungs. Silent aspiration is worse because the food/liquids can just remain in the lungs.

They thought they could see no appreciable vallecular sinuses (they hold the food/liquid before it's swallowed). I was very concerned that there was an anatomical problem but at the laryngoscopy the next day the otolaryngologist said they were there.

So really that leaves us pretty much where we were before in regards to eating. I hope that perhaps her airway swelling will continue to get better and some of these swallowing issues may be helped by that. As with so much with Ainsley only time will tell.

Hugs and Kisses

First I apologize for being MIA. You all know I was planning Evie's Harry Potter birthday party. It was so fabulous that I decided to make a blog about it. I know many of you have been dying to hear about it so here it is: http://myharrypotterparty.blogspot.com/ Now I just need to put the house back together. But that'll probably have to wait. This week is going to be a busy week. Ainsley has multiple doctor appointments and procedures. Most importantly a swallow study, hearing test and scope in the operating room. Think good thoughts. I'll post an update later in the week with the results.

Ainsley has been doing really well. There are a lot of things I'd love to post but for now I just want to post this big one. Over the past weeks I have seen evidence that she has started to understand a lot more. Sometimes it's hard to be sure but on Friday I asked her to give me a kiss and she leaned over and put her wet little mouth on my cheek. Then the following day she repeatedly gave Steve and I hugs and kisses when asked to do so. It is such a great feeling to have your child show their affection and the fact that she is understanding us is huge. Here's a picture Evie took for me.

Blenderized Diet For G-Tube

Lately the subject of a blenderized diet or homemade pureed formula has come up on the trach forum and we also have a friend from school who is interested so I thought I would put that information here for those who are considering trying it.

We heard about the blenderized on the http://www.tracheostomy.com/ forum. I was intrigued and inquired with Ainsley's dietitian. She didn't have a lot of experience with homemade formula personally but gave me a handout from the hospital. It said you have to have an expensive commercial blender (Vitamix) and that the consistency needed to match that of commercial formulas and had a lot of words of caution. I was a bit afraid of trying this approach that seemed so unheard of but am so glad I did. Once she was on the full homemade purees she stopped vomiting almost entirely within the week (until 5 months later when she developed granulation tissue). Her digestion was regular and she seemed to have an immediate boost in energy. We were hooked and have never gone back. It is a little more work and we are busy people so there are days that we still use canned formula. It's important to do what is right for you.

While I think many children are fine on commercial formulas for g-tube feeding, I think there are many kids who would benefit from receiving a homemade blenderized diet of real food. Being a bit of an idealist the way I see it is that I would never feed my other children Pediasure just because it's easier to pop a can so why would I do that for my child who needs good nutrition the most? Yes it takes a bit more work. And having a child with special needs is already demanding. Days that I feel over burdened or when bringing homemade formula would be difficult we use the canned formula. This works for us.

So for the how-to: First, as I said above, I discussed the idea with Ainsley's dietitian and received the handout that they give parents who are interested in pursuing making their own formula. That is where I started but eventually I ordered the Homemade Blended Formula Handbook from http://www.mealtimenotions.com/ , a 199 page guide which I found to be a whole lot more useful. Although it is not a recipe book it gave a lot of good information about the reasons why families choose to make their own formula, different ways families approach making formula as well as nutritional content for all kinds of crazy foods. Reading this book gave me the confidence to move forward and feel assured that making our own formula was safe for Ainsley.

As with any child we wanted to make sure she wasn't allergic to any of the ingredients so we added a few tablespoons of each new baby food to the regular quantity of her formula feeding and watched for signs of allergies for a few days. We tried all the standard baby foods including poultry, milk and rice cereal in this way, one at a time. We then made the formula according to the recipe given by the dietary department. We mixed it together 50/50 with canned formula and gave her that for a few days. She was already on bolus feedings. She did well and we made the switch.

In April we traveled to Cincinnati Children's hospital where they frequently recommend a homemade blenderized diet for kids that are having vomiting or gagging issues. They suggested making the formula much thicker than I had been and showed me how to deliver the food with a syringe and bolus tube extension (which worked better than what we'd been doing). This is what you see in the video below. We do a fast bolus which she personally is able to handle. Follow your child's cues as to what is comfortable for him/her. It is important to warm the feeding to body temperature whenever possible. We use a microwave but are VERY careful to shake it well so there are no remaining hot spots.

Over time I tried different things. Adding turmeric, garlic and other anti-oxidants. At times I used half and half because she needed more calories and Duocal calorie booster. Because Ainsley has always been somewhat underweight I use the same ingredients in precise measurements so I know exactly how many calories she is getting. This keeps the doctors and dietitians happy too. I think substituting a variety of foods is great but we just haven't got there yet. The way I see it, she is still getting a greater variety than she would if she was getting canned formula only which really only contains milk, corn starch, sugar, oil and vitamins.

I'm posting a video of me making her homemade formula and of her receiving a bolus feeding. I hope this helps people who are considering trying it. If you have further questions you can e-mail me by clicking on the link provided.

This is our current recipe which I keep in Excel with nutritional calculations. It's a handy way to have the recipe ready to print for doctor's appointment. I calculate calories, water content (In addition to the formula Ainlsey receives an additional 8oz bolus of water first thing in the morning, about 1/2 hour before her "breakfast". ) , fat and protein.

Stir together in a large bowl to moisten:

1 1/4 c whole milk
1 c multi-grain dry or rice cereal powder for babies

Add:
1/3c frozen blueberries
1 small whole banana
1/3 c fresh orange juice (but from a carton)
1 tbsp tomato paste

Use a stick blender push downward to chop up the blueberries and banana. See the video below. Make sure to keep the holes next to the blade submerged so it doesn't splatter. Then move the blade in a circle and puree until smooth.

Add and further puree:
1/3 c chicken puree
1/3 c green vegetable puree(we use a blend of peas green beans and spinach)
1/3 c orange vegetable puree(we use carrot)
1/3 c apple sauce (high sugar/calorie type)
2 tbsp omega oil or olive oil
1 dose liquid multi-vitamins

Shake off blender so you get a good measurement and then add enough milk to your measuring bowl to make just slightly over 4 cups of food. Scrape the bowl and blend well. Pour into 4 8oz servings.





Tips and Additional Information: We seldom have clogs. Usually if I do it is if I tried something questionable like pureeing whole grain bread instead of using rice cereal. Occasionally I'll feel a little resistance but if I pull the plunger back a wee bit then push again it comes free. That being said Ainsley's Mic-Key button is a 18fr. And you HAVE to use the bolus extension. I bought tube cleaning brushes from http://www.podee.com/products.html by contacting them directly. I use those to wash our bolus extensions. Not that you have to. Especially if you rinse immediately after the feeding.

Use of Stick Blender and Containers: Everything you saw in the video was already pureed. So I make the meat and vegetables in large batches and freeze them into the Gerber containers which we reuse. I'm sure they are not meant to be reused but we've found no issue with it. They stack nicely in the freezer. I big plus in my book. You can just use Gerber off the shelf and save yourself the trouble of making the purees. That is a good way to get started so it's not so overwhelming at first and a bonus is that you can save the containers for reuse. I'm sure you could also buy your own containers at a container store like Storables, if you prefer.

The Meat: I find turkey, chicken or lamb are my favorites although I have tried beef as well (I find it's a little too fatty). What is easiest is to use GROUND meat. I cook 2lb meat to 2c water in the crock pot. Break up the meat in the water before you cook it. Then after it is good and cooked you can blend it with the stick blender but it is easier to use a food processor or blender because the meat does require a lot of grinding to get it smooth. Do not drain the meat you need the liquid for the puree. I find it's easiest to puree when it's warm, not cold. Sometimes you mind want to add a wee bit of water to get it to a smooth consistency. It will be runny but will solidify after freezing/cooling. Gerber also makes small jars of pureed meat in "gravy" that you can find in the baby food section.

Vegetables: Same thing. You can leave them in the crock pot for much of the day. For carrots I just buy bags of baby organic carrots and plop them in with water. For the green veggies I will combine 1 bag frozen peas, 1 bag frozen green beans, 1 bag fresh spinach (but you could use frozen). Do not drain the vegetables, you need the liquid for the puree. You may need to add a bit more water depending on how much it has reduced. My homemade purees are more dense than off the shelf baby food. The key is to overcook the vegetables. The consistency of the puree should be smooth. You can use the stick blender but it is easiest to use a blender.

Also any food can be cooked in this manner. If you use the nutritional information from the package add water (no additional calories) and then divide the total calories by the number of puree containers it makes then you know the exact caloric content as well as fat and protein.

If you look at the Gerber containers there is a band at the top. If you measure 1/3 c into the container you will see that it lines up with the band. So I use this to fill the containers and avoid the extra work of measuring. It's less work, it's faster and there are no measuring cups to wash. Yea!

Clean up: The worst part of making the homemade formula is the containers. (At least to me.) The Gerber containers have to be washed. We purchased a wash tub that I throw them into along with the syringes and extension sets, this way they can be soaked in super hot water so I am sure they are very clean. They are made in some strange way and are two-ply so they sometimes separate slightly. We wash them with a bottle brush and air dry on a towel. It's only 3 containers a day so if you keep up on it it's not too bad.

Alternating Formula: The hospital will obviously not be able to make this for you. When Ainsley is hospitalized we switch back to Pediasure and have no problems. Her stools will change but that is normal. Perhaps it helps that we continue to use Pediasure on occasion.

*Please note the date of this post, Feb. 2009. More current information is now located on my Blenderized Diet page.

Pulmonology Appointment & Eating

Today we had an appointment with Ainsley's pulmonologist. He was the doctor who was instrumental in getting the Nissen Fundoplication to protect her lungs from aspirating stomach content. He was brought onto Ainsley's team in August. And agreed with Cincinnati's finding of bronchiectasis based on the chest CT they did there.

Today I asked about the bronchiectasis and whether a second chest CT is warranted. Ainsley has never had the classic symptoms of bronchiectasis. No respiratory infections. No mucous that just sits in the lungs. No unproductive cough. She did cough a lot but there were always secretions. The doctors dismissed it as typical trach adjustment that she would grow out of. Now that she is doing so well after her fundo she is wearing her PMV all the time. And her secretions and therefore the coughing have really minimized. When she is not sick we are suctioning only 3-4 times a day max. It is a HUGE change. She is even wearing her cap for up to 5 minutes at a time. He was really pleased.

In addition she has started taking more of an interest in eating. Still just tastes but she is again opening her mouth willingly. And she even PUT A CHEETO IN HER MOUTH during therapy on Tuesday. This was her first attempt at putting regular food in her mouth ever. Normally it's just puree or liquids. Her therapist was wowed. Even though it was really just a crumb it was huge progress for Ainsley. So I am concerned that she could be aspirating small amounts now that her airway swelling has improved some. And if she does indeed have bronchiectasis that could be damaging to her already damaged lungs.

I would love to have another chest CT with the hope that somehow the damage is gone so that I don't have to worry about it getting worse. Of course aspiration is still not good and should be prevented but my level of concerned is heightened due to this diagnosis. I'm not even certain that she is not aspirating her saliva. Dr. D. said that if we really want it we could do the chest CT, but he'd rather put it off and just have it on our radar for the next year. We don't want to expose her to radiation unnecessarily and it's likely she'd need to be put under anesthesia so she's still enough to get a good image. So I can live with that.

He did order a repeat swallow study. I feel it's time. Lately I have not really seen trace amounts of food/drink in her secretions when she eats but we need to know for sure. Especially if she is going to be eating a few bites of food here and there everyday. So that will likely happen soon.

It will be great to know if she is safe to eat now that her airway is opening up.


Here she is "eating" a Cheeto. When your kid won't eat you'll feed them anything.


Happy as can be with a Cheeto in one hand and a Caesar Snapea in the other.

Look What I Did Today! Picked Up My Foot!

Today Ainsley was kneeling at the couch while Evie was reading Harry Potter and she picked up one leg and put her foot down! It's great that she's feeling confident in her ability to maintain her balance and risk moving her leg and potentially falling. Hopefully we'll start seeing lots more of this. Wouldn't that be grand?!

P.S. Mommy did NOT pick out this outfit.