Ellie's Trach

I started this post shortly after Ellie got her trach to help others understand life with a trach better, but I felt like I still had so much to learn myself that I put off finishing it until I was a more experienced Trach mom. I started working on it again during Ellie's last hospital admission, but never got it finished before she died. Now as I've returned to work and am taking care of other trached kiddos I have a desire to finish this post to document a little about life with Ellie's trach.

A common response I got when I initially told people my daughter had a tracheostomy was, "Oh, is that what the smoker lady on those commercials has?" While technically that was true, I have always hated that comparison. Those commercials were made to scare people by showing the horrible and scary consequences that could come from smoking and made a tracheostomy out to be something gross and disgusting. Ellie and her tracheostomy were neither gross nor disgusting. As a matter of fact, Ellie was somewhat of a poster child for adorable trach babies. When she was readmitted to the hospital with rhinovirus just weeks after getting her trach I was approached by one of the doctors who had followed Ellie during several of her admissions. He said he didn't usually do this, but he had a favor to ask me. There was a very young couple whose baby was in need of a trach, but neither one of them had any idea what a trach even was. The more they tried to explain it to the parents the more terrified they became. The doctor said he kept thinking about darling little Ellie and if they could only see how adorable and happy she was that they would feel so much better. He asked if I would be okay having them come down and meet Ellie and if I would be willing to talk to them and answer any of their questions. Of course I said yes. The visit was a huge success, not only for them, but for me, too. The fact that others saw Ellie as a prime example of a perfect trach baby along with the doctor's praise of me being one of the most knowledgeable and capable new trach moms he'd ever met (which was debatable, but it was just the confidence boost I desperately needed at the time) lifted my spirits that were pretty low at that point.

The thing that makes a tracheostomy seem so scary to most people is not understanding it. So I am going to attempt a brief overview of what a tracheostomy is and the care it requires.
A tracheostomy is a surgically created hole through the front of the neck into the trachea (windpipe). This is done for a variety of reasons including bypassing a problem or blockage in the airway or prolonged mechanical ventilation.

Ellie's Stoma

The opening in the neck is called the Stoma. A tracheostomy tube is a curved tube that is inserted into the stoma to keep it open and allow ventilation to occur through it. There are several different kinds of tracheostomy tubes that have different features for different purposes.

Bivona Flextend

When Ellie first had her trach placed they used a Shiley which sits right against the neck under the chin. Because of her short neck it was really difficult to access and clean around the trach and after just a few days it was causing skin breakdown under her chin. So they switched her to a Bivona Flextend which is more commonly used in infants and children. The flanges sit against the neck to hold it in place, but a longer extention tube allows for the end of the trach to hang below the chin. The Bivona Flextend was a much better fit for Ellie.

Shiley Trach

Bivona Flextend Trach

Trach ties are the neckbands that hook onto the flanges of the trach with velco straps and fasten around the neck to keep the trach securely in place. The trach ties should be secured tight enough that a finger can snuggly slide between the neck and tie. Tighter than that can cause skin irritation and looser than that could allow for accidental decannulation (the trach tube coming out).

Trach Ties

After the trach tube is secured with trach ties, a 2x2 drain gauze (a piece of gauze with a premade slit in it) is tucked under the flanges to absorb moisture and secretions and protect the skin. 

One of the most important parts of caring for a tracheostomy is keeping the skin around the stoma clean, dry, and intact to reduce the chance of infection. We referred to this as Ellie's "trach care" which is done at least every morning and night. Trach care is done by removing the gauze and cleaning under the tracheostomy tube and around the stoma with sterile water and cotton swabs before placing a clean gauze. Every morning the trach ties are changed during trach care. This requires a little more skill because you have to hold the trach tube in place while undoing and changing the ties so that it does not accidentally come out. If you think changing a wiggly baby's diaper can be tricky, you should try changing a wiggly baby's trach ties. It is no easy feit and for the first few months was a two person job for us. I remember when we were in the hospital being trained on Ellie's trach care and it would take Scott and me 30 minutes to get through Ellie's trach care and we would literally be dripping with sweat by the end. I had a hard time believing the doctor when he told us that doing Ellie's trach care would become as natural as doing her hair every morning, but it really did. Eventually we got good enough that one of us could do trach care on our own in a matter of minutes. Ellie always had a very clean trach that was easy to care for and we never had any problems with skin breakdown or infection around her stoma. For other trach kiddos it can be a constant struggle and issue. I'm grateful it wasn't for us.

(If you would like to see a video on trach care click on this link).

The most critical skill that must be learned by anyone who will care for a trached child is how do a trach change. For a lot of people this is an intimidating part of caring for a trach. There are two types of trach changes: routine and emergent. Routine trach changes are done weekly. You remove the trach and replace it with a clean one. You want the procedure to be as close to sterile as possible. We always tried to have two trained people present for each trach change in case anything went wrong. Before my first trach change a respiratory therapist told me it felt like putting in an earring and I found that to be very true and helpful. Truthfully I grew to love and anticipate our routine trach changes because for a few seconds each week, between taking out the old and putting in the new it was like someone turned off the mute button and we got to hear Ellie's true voice. Even though most of the time it was in the form of crying, it was still magical. If you are interested, this video shows the process of a routine trach change.

An emergent trach change would occur if there was a mucus plug (thick secretions occluding the trach tube) an accidental decannulation (the trach tube coming out) or any other situation where their airway was compromised or they were struggling. There is a saying they ingrained in us during trach training "when in doubt, change it out". For this reason we had to have a spare clean trach and all of the supplies for a trach change with us at all times. We only experienced two accidental decannulations with Ellie, once in the car and once in her crib during a nap. Both times were pretty intense and scary, but served as a good reminder for us that we always had to be ready. 

When you or I breathe through our mouth and nose, our upper airway warms, cleans, and moistens the air we breathe. Breathing through a trach bypasses these mechanisms so that the air entering the lungs is cooler, dryer, and not as clean. This creates several important aspects of caring for a trach.

First, in response to these changes, the body creates more mucus. The increased amount of mucus requires frequent suctioning to keep the tracheostomy tube clear and patent.

There are different systems and protocols used for suctioning depending on the child's suction needs and the supplies provided by your DME company. We used suction catheters with plastic sleeves on them to keep them clean between uses and then changed them out each day. Before you ever suction it is important to know the safe suction level. This is the measurement on the catheter that correlates with the depth to insert the catheter so that the tip barely pokes out of the end of the trach tube without hitting the carina (where the airway bifurcates) as this can be very painful and cause damage to the airway. While keeping the catheter as sterile as possible you insert the suction catheter to appropriate depth, cover the suction port with your thumb to activate suctioning, then twist catheter in a circular motion while slowly pulling it out. Sometimes it requires 2-3 passes to clear out all the secretions. If secretions are too thick or deep to clear it might require a lavage where you squirt 2-3 drops of saline into the trach to loosen secretions then immediately follow with suctioning.
Ellie always had a good amount of secretions which created a constant gurgly sound with her breathes. As someone who genuinely struggles with misophonia, which literally means the hatred of sound, the constant gurgling noise caused a lot of anxiety in me at first. Because of my dislike of the noise, my natural instinct was to suction, suction, suction until the gurgle was gone. I was quickly taught, however, the importance of not over suctioning which can actually lead to an increase in mucous production. Figuring how much suction Ellie needed without overdoing it had a bit of a learning curve for us, but slowly we got to know Ellie's normal and became more comfortable in knowing when she needed suctioning. Eventually we grew accustomed to her gurgly sound and even learned to love it as it became Ellie's voice. The gurgly sounds Ellie made were not typical for babies to make and it was one of the things that made people feel uncomfortable around Ellie. We often had people ask if Ellie was okay because of a noise that she would make that was perfectly normal to us, but alarming to others around us. Our portable suction machine that was never far away from Ellie was bulky, heavy, and extremely loud and obnoxious. It was impossible to suction Ellie without drawing the attention of everyone around. These things sometimes made it uncomfortable to go places like church or the store knowing we would get all sorts of odd looks when it came to Ellie's secretions and suctioning.

Our Elf on the Shelf was practicing his suctioning on Ellie's trach bear.
Ellie loved the sound of the crinkly plastic on her suction catheters and was always trying to get to them so finally we started just giving her spare ones to play with so we could keep her actual suction catheter clean.

Second, without the upper airway moistening the air breathed in through the trach, artificial humidification is required to keep lung tissues and secretions moist. This can be done in several ways. Ellie's main source for humidification was her trach mask, also called a trach collar or humidification mask. 

Ellie's trach mask consisted of an air compressor which blows air through a heated humidification bottle filled with sterile water which creates humidfied air that travels down several feet of corregated tubing and out the trach mask which covers the trach. In Ellie's case, extra oxygen was also administered with the humidification. When Ellie first got her trach she was extremely dependent on the humidification from her trach mask and could only be off of it for short periods of time or her secretions would thicken and become difficult for her to manage which would increase her work of breathing and oxygen requirements. Since the air compressor is not portable and the tubing cannot be more than a few feet long this meant we were literally tied to Ellie's crib all the time. As she got bigger and stronger and her lungs recovered from all the damage that occurred from aspirating the first 2 months of her life, she was able to tolerate being off her trach mask more and more each day. We did learn that the lack of humidification didn't always have an immediate effect, but rather her secretion's reflected the humidification from 24 hrs prior. So if we had to go to a doctors appointment or braved an outing with Ellie and she was off her humidification for longer than usual, she might handle it fine at the time, but the next day her secretions would be thicker, she would require a lot more suctioning and have to work harder to breathe, and would require her trach mask all day. After moving to Omaha we noticed that Ellie did not require near as much humidification as she did in Utah. I think part of this was due to her getting bigger and stronger, but I also think the humid climate of the midwest helped. Most days she could get by just being hooked up to her trach mask during her naps and when sleeping at night. With this new found freedom we were able to go on much more outings with Ellie without paying the price for it the next day. Any time that Ellie got the littlest bit sick, though, she would need the trach mask around the clock in order to avoid getting mucous plugs.

What our day to day life looked like tied down to the trach mask.

The trach mask system was definitely our most high maintenance piece of equiptment. All the parts of it had to sterilized and/or switched out at least weekly to prevent any bacteria from building up in it. The humidification bottle had to be filled to a specific level. If it dropped below it than Ellie would not receive adequate humidification. The heater we had was inconsistent and temperamental so we had to continually be monitoring the temperature with a thermometer near the end of the tubing to make sure it was warm enough but not too hot. The tubing needed to stay as close to level as possible for optimal humidification. If it wasn't than condensation collected in loops of tubing and could potentially be dumped out on Ellie with the risk of her aspirating the water through her trach. There was a collection bag in the middle of the tubing to help prevent this, but that required regular emptying. There were so many factors that went into Ellie getting the right humidification to keep her lungs healthy and strong. 

When Ellie wasn't hooked up to the trach mask then we used an HME (heat moisture exchanger) also known as an artificial nose.

It is called an artificial nose because it replaces the nose's function of filtering and humidifying the air breathed through the trach. It creates humidity by trapping the moisture that is blown off with exhalation in the chamber which the inhaled air will then pass back through and pick up. It does require more work to breathe through an HME and doesn't provide as much humidification so some people tolerate it better than others. As I mentioned before, Ellie only tolerated wearing the HME for short periods of time at first, but as she got bigger and stronger she tolerated it more and more. It was important to monitor how moist the paper filters got because if they got too wet or gunked up with secretions then it would be like breathing with a wet washcloth over your mouth. Because of Ellie's amount of secretions we went through several HMEs a day. At $5 each, it was a battle with our insurance and DME to get approved for more than 1 a day, so sometimes that alone was a limiting factor on how long she could be disconnected from her trach mask.

This leads me to the third aspect of trach care, which is filtering the air. Remember that a tracheostomy tube is direct access into the lungs. So a big part of caring for a trachestomy is making sure nothing gets in it that shouldn't be going into the lungs. This includes water, smoke, dust, lint, hair, the list could go on and on. A guideline that we were given was that Ellie should not be in any environment where an aerosol or particle can be seen in the air. This meant she couldn't be around when I was cleaning with sprays, she couldn't wear clothes or use blankets or stuffed animals that shed or had lint, she couldn't take real baths or swim. One respiratory therapist totally freaked me out by telling us we had to be careful not to let flies in the house because they loved warm, moist, moving air and could very easy fly up the trach into her lungs. Wearing the HME helps filter bigger particles and prevents things from going in the trach, but it doesn't filter out all the dusts and particles in the air. This was another very limiting factor on where we could go and what we could do with Ellie. For example, on the Fourth of July, I had Ellie outside with everyone, but once we started doing fireworks and clouds of smoke started to form I had to take her inside.

I have already done a post on why Ellie did not have an audible voice with her trach and the use of a speaking valve. You can find that information here.

Ellie with her Speaking Valve on.

There are so many things you have to consider and be prepared for everywhere you go with a trached kiddo. Because of this it is required that you take a "trach bag" everywhere with you. We were given a trach bag in the hospital with the essentials but quickly found that there were additional things we needed. We eventually ended up getting a Utility Tote from Thirty-one that could fit our portable suction machine, all of Ellie's trach supplies, feeding tube supplies, and normal diaper bag items in it. It weighed a good 25-30 pounds when all packed up and went EVERYWHERE with us.

This is just a brief (I know that there is actually nothing brief about this post) overview of caring for a trach. As you can see life with a trached child is extremely complex and has many limitations. From the moment Ellie got her trach I started looking forward to and dreaming about the day she would get her trach out. If Ellie could just get her trach out our life would be so much easier. I found myself putting life on hold and telling myself we'll do that when Ellie gets her trach out. I honestly expected that Ellie would get her trach out by the time she was 2-3 years old so it seemed best just to hunker down and get through those years and then we could really start living. As time went on, though, I started to realize that life with Ellie was only going to get harder. Having a baby with special needs is a whole lot different than having a 5, 10, or 15 year old. The fact that Ellie couldn't walk or talk and was developmentally delayed didn't matter much as a 1-year-old. But have a 5-year-old who can't walk and a 10-year-old who can't talk is a much bigger challenge. I realized that these early years were the prime of Ellie's life and we needed to be enjoying them trach and all. So I did my best to fill our summer with the kind of experiences I wanted Ellie and my other kids to have. We went to the zoo, the children's museum, the swimming pool, the library, the park, and even sent Ellie down the slip 'n slide with Mason. It took A LOT of work to go on the simplest of outings and there were many times I would be shedding tears of exhaustion and frustration by the time we were in the car to go home, but I felt the need to make memories NOW. As difficult as it could be, I guess we were doing a pretty good job because there were many people around us who did not understand how truely difficult everyday life with a trach baby was. I actually had one person, after spending a couple days with us, tell me that life with Ellie wasn't as hard as I was making myself believe it was. This comment didn't sit well with me, but I tried to take it as a compliment that we had gotten so good at life with Ellie that we made it look a whole lot easier than it actually was.

When I took Ellie to her new ENT in Omaha, Dr Goebel, she was healthier and doing better than she had in her entire life. There was a big part of me that thought she could be getting her trach out sooner than later. After her initial assessment of Ellie, Dr. Goebel agreed. She was very upbeat and optimistic at how well Ellie appeared to be doing with her trach and said she might be ready to get this trach out! She wanted to do a quick scope of her upper airway to see how her laryngomalacia was doing. We went into the procedure room and I helped hold Ellie while Dr. Goebel did put the camera through her nose down to her larynx. As the camera went in Ellie fought and cried hard and Dr Goebel got quiet. Her whole demeaner changed as she finished the scope. After she was done she sadly told me that while Ellie's laryngomalacia was looking better, the back of her throat was extremely hypotonic and was completely collapsing down just with her crying. She said that based on what she saw Ellie still needed her trach and she probably would for quite awhile. She said she could very well see Ellie getting to the point where she was capped all day, but would likely never pass a sleep study required to remove the trach. This made sense to me since so many of our 4p+ friend struggle with major sleep apnea issues. It was not the news I was hoping for and hit me hard, although not as hard as I would have expected. I guess, in away, I had already decided we could be happy with Ellie's trach and so I was okay with it.

Since Ellie's death I have had several people referred to me by friends when their child was getting a trach. Truthfully I feel completely inadequate to give any type of advice or direction to these parents because clearly we didn't do a very good job or Ellie would still be here. I don't write this post as any type of direction on how it should be done, but simply to document Ellie's trach and how we cared for it. We may not have been perfect, but I can truthfully say I gave it all I had.

Million Dollar Baby

I still cringe when I think back on the conversation Scott and I had while driving to the hospital before Ellie was born. We talked and laughed about the impact this little girl of ours was having on our savings account already. The less-than-ideal insurance we had while Scott was in graduate school didn't have maternity coverage so we were paying out of pocket for my pregnancy and delivery. We joked that when the time came for her to go to college and get married we would tell her sorry, but we used your college fund to pay the hospital bills when you were born. The thought never even crossed our mind that she would be anything less than perfect or that there might not be a possibility of college or a wedding in her future. Little did we know that in just a few short hours the perfect life we had envisioned for our daughter would be shattered and that we would give anything in this world to have college and marriage be a part of her life. Also, the joke was on us, because the cost of my delivery that we were making such a big deal about would soon look like pocket change next to all of the medical bills that quite literally made Ellie our million dollar baby.  

I have hesitated writing this post for several months now because I feel a little uncomfortable discussing our personal finances on my blog. But, after experiencing such an unbelievable outpouring of help to cover Ellie's medical and funeral expenses, I want to share what that money was used for and to try and convey what a huge blessing everyone's generosity has been for us as we try to move forward. 

I've talked a lot about how demanding Ellie's day to day care could be, but if all we had to worry about was just taking care of Ellie it would have been completely manageable. The more challenging and overwhelming part of having a medically complex child was the financial worry. Just to paint a quick picture of how fast things can add up when caring for a trach and feeding tube dependent child, here are a few examples of what Ellie's care cost:

Trach/g-tube supplies and equipment= $4,000/month
Specialized formula (Peptamin Junior) = $30/day
Hospitalization = $100,000/week (that does not include doctor or surgical bills)
Lifeflight = $12,000
Genetic Testing = $10,000
Monthly Synagis Shots (RSV vaccine) = $3,200/month
Chest PT vest = $15,000
Electric Bill while running medical equipment = doubled

The month we brought Ellie home with her trach our Electric bill more than doubled. This is how our electric usage changed the month after Ellie died.

That's what insurance is for, right? Unfortunately, the reality is that even after high deductibles and out of pocket maximums are met (in a matter of days), insurance companies will still do everything in their power to get out of paying these bills. In our case, Ellie was frequently denied necessary equipment and treatments because she didn't fall under one of their approved diagnoses. Guess what, when your child has a rare genetic disorder that no doctor has even heard of, it's not going to be on any of the insurance company's lists. You as a parent then get to spend hours on the phone frustrated and trying to get anyone to listen to you. You fill out stacks of paperwork and write letters of appeal pleading your case. Sometimes it pays off and other times it doesn't. Then you are put in the impossible position of either figuring out how to pay for it on your own or going without a potentially life saving treatment for your child. Every penny spent was completely worth it to watch our daughter be happy and thrive.

Because of the extreme costs associated with caring for these wonderful kids, each state has a waiver program for technologically dependent (trached) children that provides families with the highest level of state resources that include nursing hours, respite care, full medicaid coverage, and other resources to help relieve the strain of their care. When Ellie got her trach we were placed on what we were told would be a two year waiting list for Utah's waiver. In the mean time, we were left to fend for ourselves.

Scott and I have always tried to be financially responsible. We believe in living within our means, paying our tithing (a religious belief of ours), saving before spending, and avoiding debt. We have practiced each of these things for our entire marriage and felt like we were financially prepared. All of these things ended up playing against us after Ellie was born. It felt like we were stuck in a broken system when even when our medical bills exceeded our income, we were unable to qualify for any type of assistance. We were advised by some to quit working, spend down our savings accounts, and finance our cars so that we could qualify for the help we needed, but this went against our core values so we continued to work our hardest to make ends meet. It was discouraging to watch everything we worked so hard for melt away, but we were blessed in countless ways and we are so grateful that through these blessings our family's needs were always met.

When we were considering which job to take after graduation Union Pacific's offer had several financial benefits that would significantly help us get back on our feet, but at the top of that list was the fact that Nebraska's waiver program did not have a waiting list. It took us a couple of months after our move to get all of the paperwork done and approved, but starting in August Ellie was officially on the Katie Beckett Program. We had struggled for a year to make it on our own and miraculously had survived. We finally had access to all of the resources we needed to give Ellie the best care possible and a huge burden was lifted off our shoulders. I felt more optimistic about our future than I had in over a year. It proved to be a short lived victory, though. Ellie died just a few weeks later and then we had all of her funeral expenses to add to the medical bills we were still paying off.

I've learned a lot while being Ellie's mom, but one of the things I've had the opportunity to practice over and over again is humility. I have learned that the Lord most often answers our prayers through other people and he can only help me as much as I am willing to allow others to serve. It's been a tough lesson at times for someone like me who prefers to take care of myself and my own problems. As much as I would have loved for Scott to suddenly get a 50% raise or for a large lump sum to magically appear in our bank account, that's not the way it works. In the days following Ellie's death, my best friend, Stacie, asked if I would be okay with her organizing a fundraiser and donation account to help with expenses. Without thinking much about it I gave her the go ahead. The next few days were a complete blur for me with word of Ellie's Auction swirling around in the mix with everything else.

I didn't fully understand what was going on, but I felt so much love and support that helped carry me through those difficult days. It wasn't until after Ellie's funeral that I even began to comprehend the extent of Ellie's Auction. Honestly, I still don't even have a complete understanding of everyone who contributed and what took place to make it all possible. What I do know is what started out as a single night of selling $2 raffle tickets at a local store turned into a nationwide online raffle with some pretty unbelievable donated prizes. In addition to Ellie's Auction there were others who did their own fund raisers on their etsy shop or selling baked goods to neighbors and sending all of the proceeds to us. Not to mention the many friends, family, and complete strangers who generously donated to Ellie's memorial fund.
This is where I run out of words. What can I possibly say to adequately express my gratitude to all of you out there who gave so selflessly and made it possible for us to pay off Ellie's medical bills and funeral expenses that would otherwise have taken us years to pay off on our own. While there is nothing that anyone can say or do to lessen the constant ache in our hearts for Ellie, by making it so we no longer have a line in our budget and monthly payment to remind us of our loss, you have cleared away the hopeless dark clouds that were left hanging over our heads and allowed us to feel instead the warm rays of sunlight that Ellie filled our life with.
So anyone out there reading this who played a part, big or small, in any of this, please know what a difference you have made in our life. I wish I could thank every single one of you personally, and believe me I'm trying, but there are so many contributors I will never know by name. You know who you are, though, so Thank You!!!

Too Easy

It's been a month since we returned to Omaha without Ellie. Scott went back to work, Brynn and Mason resumed school, Miles picked up where he left off being a carefree 2-year-old, but all I had to go back to was a big empty void because the center of my whole life was gone. I had gone from a crazy but wonderful summer of having all four of my kids home to easy going days with one child in the blink of an eye. Those summer days were long and hard, but I wouldn't have wanted them any other way.

My nights were often long and each morning little feet would come running into my room much earlier than I was ready for them. Miles has always been an early riser and this summer was no exception. Since my sleep patterns while caring for Ellie weren't all that different from having a newborn, I only felt a little guilty sticking to the rule that if baby is sleeping then mommy should be sleeping, too - at least in the morning.  

Sadly, Miles had gotten used to having a sleep deprived mom and just started doing his own thing each morning. He would usually go downstairs and pour himself a bowl of cereal, bring it up to my bed and watch shows next to me until Ellie woke up. I knew when I eventually got up I would be greeted by a trail of cereal leading down to the kitchen where half a box of cereal would be dumped all over the floor, but that was the price I paid for an extra half hour of sleep and it was completely worth it every single time.

Once Ellie woke up, however, it was time for the day to start whether I was ready or not. First I would hear her start kicking the side of her crib and would know the inevitable time to get out of bed had come, but would try to savor a second or two more in bed until I was snapped awake by the sound of her sat monitor alarming which could mean one of two things. Either she had succeeded in her favorite game of pulling off her sock and sat monitor and was totally fine, or she was coughing up all of the secretions that had settled in her lungs during the night and needed suctioning immediately. Most of the time it was both.

No matter how tired I was, this was my absolute favorite scene to walk in on every morning. No matter how she was twisted or turned in bed she would look up at me and give me the biggest grin.

The big kids came swarming to Ellie's room in excitement as soon as they heard her awake. They would hang on the sides of her crib showering her with their typical greetings of, "Hi little girl!", "Hi my little Ellie Bellie!", and of course a "Hi, Hi, Hi!" from Miles. After a few minutes of suctioning to get all the gunk out of her lungs it was time to get Ellie cleaned up and ready for the day. She may have been adorable smiling at us upside down, but the truth was she was a sweaty, hot, mess each morning after having warm humidified air blowing on her for 12 hours.

First thing, we would disconnect all of her monitors and feeding tube and strip her down for a bath. Ellie's bath consisted of an inch of water in the bottom of the bathtub that I would lay her in and essentially sponge bath her so as to avoid any water getting in her trach. Ellie loved her baths and would kick her legs like a maniac splashing and laughing as she played in her inch of water. Once out of the bath it was time to do all of her morning cares. It really was ideal to have two people doing it, but since I was almost always on my own the older kids became excellent assistants.

I would start with her g-tube care which involved cleaning around the g-tube site with a q-tip (this was the thing Ellie hated more than anything), cleaning out her extension tubing, putting a clean pad under the button to protect her skin, securing the tubing to her stomach so she wouldn't pull it out (she loved to tug on the tubing). Sounds easy enough, but Ellie had developed a very effective defensive move of hooking her legs around my forearms as I worked and pushing my arms away which often times made it very difficult to complete these tasks in a timely manner.

Next I would do all of her trach care including sterile cleaning around her stoma (the hole in her neck), changing out her trach ties, washing her neck under her trach ties, and placing a new piece of gauze. This was the hardest part to do by myself because it was the time when Ellie loved to use her quick little hands to decannulate herself (pull her trach out). This is where Mason, Brynn, and even Miles came to my aide by standing on the garbage at the head of the changing table and distracting Ellie while I did everything as quickly as possible. One of Ellie's favorite things were the tweezers we used to put the gauze under her trach. You know - the sharp, pointy, perfect for causing bodily harm kind that you should never let your baby play with. I would have to sneak them up under her neck without them entering her field of vision because if she laid eyes on the tweezers before her trach care was done then it was a lost cause even trying to continue. She would go after those tweezers relentlessly until she got a hold of them. When her trach care was complete I would reward her by letting her play with her tweezers for a little while... supervised, of course.

Then it was on to oral care. After months of a full blown wrestling match to get a swab past her lips to clean her teeth and mouth, one day she decided the pink swabs were one of the few things she allowed, and even enjoyed, in her mouth. I would hold out the swab in front of her and she would grab that thing so fast and pop it right in her mouth. She was a smart and very particular little girl because when she was in the hospital their swabs were identical except they were green and she would have absolutely nothing to do with them, but as soon as I showed up with a pink one from home she swiped it out of my hand and went to town sucking on it. At least we know she wasn't color blind.

After all of that was taken care of  it was onto typical baby care like lotioning, dressing, combing hair, all of that fun stuff. The last thing we had to get done before it was time to start her morning feeding was her Chest PT which Brynn nicknamed Ellie's "pat pats".

This is where we had to manually percuss Ellie's chest and back in 8 different places for a total of 30 minutes to help break up and loosen the secretions out of Ellie's lungs so she could cough them up and clear out her airways. It was a serious arm workout to percuss as hard and as fast as I could for 30 minutes straight. Ellie's lack of cooperation didn't make it any easier, but we discovered that she was a big fan of Baby Einstein videos and they served as a wonderful distraction/reward for her cooperation during this less than pleasant treatment. Brynn would get her baby doll and an extra "pat pat" and follow right along with everything I did. Have I mentioned that my sweet 5-year-old daughter was more qualified in caring for Ellie than most nurses?

In August, Ellie was finally big enough for a Chest PT vest that hooked up to a machine that basically pummeled her chest and back, shaking her entire body while doing it, and was much more effective (and easier for me) than the manual percussion. This machine was going to be a total game changer for us, but unfortunately we only got to enjoy it for 3 days before Ellie was hospitalized.

Once her pat pats were done it was time to change out the tubing on her feeding pump and get it set up in her portable backpack for the day. We would start her first feeding of the day which consisted of 4 ounces of Peptamen Junior (the newest formula she was one) that would run in over 2 hours. Once that was complete we could unhook her from her backpack for 2 hours until her next feeding. We would repeat the two hours on and two hours off cycle throughout the day.

That concluded Ellie's morning routine and we were now ready for the rest of us to get started with our day. This included the big kids doing all of their daily responsibilities, one of which was Mason and Brynn each being assigned to play with either Miles or Ellie for 15 minutes while I got in the shower and got ready. They would always fight over who's turn it was to play with Ellie. I was so grateful that I could trust them to take care of her and get me if she needed something.

Meal time with Ellie was different since she didn't eat anything orally and we were still in the process of trying to convince her that food was not her arch enemy. We were doing monthly feeding therapy at the hospital and with our at home occupational therapist and then continuing the therapies by ourselves on a day to day basis. As part of her feeding therapy we would always try to involve her in family meal time. Whenever we were eating we would put her in her high chair and pull her up with the rest of us and give her tastes of the food we were having. It seemed to be helping because Ellie definitely knew when we were eating and she acted very excited about the idea of food, but still wasn't sold on the concept of actually putting it in her mouth.

We were having the most success with "hard munchables". These were foods that Ellie could hold and explore in her hands. She liked these best because she was the one in control of touching them to her mouth for a taste and could pull them away if she didn't like them. Really the only thing she would willingly put to her mouth were chips. She loved licking the salt off of them. Her trust issues were very apparent in this area, too, because she would only accept food that I handed her. If someone else tried to hand her something she would refuse to take it, but if I took it from them and offered it to her she would willingly take it from me. All of her therapists agreed this was a great sign of her cognitive ability to know who people were and identify who she trusted. 

We tried to incorporate Ellie's therapy throughout our daily activities. Ellie's occupational therapist would come to our house every other week to work with Ellie and give us ideas of different things we could do that would help develop different skills. The kids all loved being involved in Ellie's therapy and would line up to help play with her. One of our favorite activities was to sing songs. Ellie loved music! We had several cards that each represented one of her favorite songs including itsy bitsy spider, row your boat, twinkle twinkle little star, if you're happy and you know it, etc. We would hold up two in front of her and ask if she wanted to sing. She would grab one of the cards and we would sing whichever song she chose. We used this game to help encourage the use of several different signs (music, more, want, all done), help her learn to mimic the actions that correlated with each song (another skill for learning to sign), as well as to help her develop cognitive skills that would hopefully help her be able to use buttons for communicating in the future.I think Miles and Brynn enjoyed doing this more than Ellie did.

For me, the most challenging and demanding part of having a special needs child was keeping up with all of the phone calls and paperwork. I could have kept a full time personal assistant busy managing insurance issues; ordering supplies; reordering supplies when they messed the previous order up; scheduling appointments, tests, and therapies; applying to state programs; calling doctors offices with questions or concerns; filling out and faxing paperwork that needed to be submitted by certain deadlines; the list could go on and on. None of these were quick and easy things either. Scott and I had to increase our phone plan to unlimited minutes after Ellie was born because we spent so much time on the phone. I can honestly say I don't miss this aspect of Ellie's care.

I tried really hard to make sure that we balanced all of the business with as much fun as possible. I got more and more comfortable getting out of the house with all four kids in tow as the summer went on. We developed a system with Ellie strapped to my chest in the baby bjorn, her feeding backpack on my back, and her 20 pound trach bag - containing her suction machine and any trach or g-tube supply we could possibly need in an emergency - slung over my shoulder. I only got into trouble if Miles needed to be carried for any reason (hurt, tired, or being naughty). Sometimes it was easier to just stay home and that was fine, too, because we had plenty of fun around the house and yard together.

By the end of the day the house was usually a complete disaster and I was running on fumes. When Scott walked in the door from work he was nothing short of my knight in shining armor. Without missing a beat he would swoop in and give the kids the attention they were wanting, finish up (or many times start) making dinner, and clean up the whole house. I know this wasn't his dream scenario to return home to after a long day of work, but he was always so supportive of me pouring every ounce of energy into the kids and he would pick up all of the other pieces without complaining a bit. We are a team and I couldn't do any of this without him.

Ellie's bedtime routine was pretty much a simplified version of her morning routine where I would do her trach care without changing the trach ties, get her dressed in her jammies, do her pat pats, and then read some books before laying her in her crib and hooking her up to her monitor, trach mask, and nighttime feeding (slow continuous rate through the night). She was an amazing baby and as soon as her machines would turn on, she would just grab her binkies (three of them, including her weighted binky, to be exact), roll over, and go to sleep. 

 Has it been apparent enough that Ellie's brothers and sister were extremely involved in her care? I didn't talk much about their routines and the things I would do with them during Ellie's naps, but that was all a part of our day as well. Brynn and Mason did a wonderful job fulfilling their summer responsibilities each day which was a huge help to me in keeping the house in order. All of them were so patient has I tried my very hardest to balance all of their needs with Ellie's needs when the truth was that Ellie's needs always trumped theirs. Her needs were usually a medical necessity that could not wait and the kids were so understanding of that. I always worried that the sacrifices they were having to make at such a young age would have a negative impact on them, but I now realize they learned more about selfless love than I ever could have taught them.

This was the last picture I took of my kids together.
It was at bedtime, right after we finished Ellie's pat pats, the day before she was admitted to the hospital. This scene is exactly what I picture when I think of my kids' relationship with Ellie.

Now, life is much simpler.
We all wake up, get ready, and eat breakfast together before Mason and Brynn get on the bus for school. That is at 8 o'clock. At that point I turn to Miles and ask him what he wants to do today. We usually go out and do something each morning because staying home is almost more than I can bare most days. We have lunch and then Miles takes a nap. After he wakes up we hang around the house doing whatever we want until Mason and Brynn get home from school. The kids spend the evening playing with friends and doing homework. Once Scott gets home we have dinner and get ready for bed.
It's all just way too easy.

 It feels like spending months training for a marathon and on race day showing up to find out it is only a 1-mile fun run. For 15 months we prepared for and accepted a life with a special needs child. Ellie was a huge driving force behind every single decision we made when moving out to Omaha. We bought a house with an open floor plan that would be conducive to her using a walker or wheelchair in future years, we made sure we were in the boundaries for the school with the strongest special needs program in the district and therefore the most resources for Ellie, we got Ellie on Nebraska's Katie Beckett program so we could finally have access to nighttime nursing care and respite hours, we even put behind us the expectation of one day becoming empty nesters.
Now everything we prepared for is gone and life is back to what it used to be. It is definitely easier and a lot of people would say our life will be better now, but to me it just feels empty and meaningless.
I'm trying my hardest to enjoy the time I have with my kiddos. I really do love being able to spend more quality time with them. But nothing will ever compare the those wonderfully crazy summer days we had.  

Ellie's Nursery

 I am fully aware that typically when someone posts pictures of a nursery on their blog it is expected to be full of pinterest worthy themes and diy projects. Well I hate to disappoint, but I can promise that no one will be pinning Ellie's nursery with its mismatched furniture, pink hospital buckets, and bare walls to their boards any time soon. Unless they are looking for a functional hospital room theme, in which case I think we've really nailed it. I wanted to do a post about Ellie's room first of all because it is where we spend the vast majority of our day, but also because it is the easiest way to explain all of the equipment she requires. 

Despite me not giving a second's thought to decorating the room, we have spent a lot of  time and energy and money (all that equipment is not cheap) turning this room into what it is. The day we brought Ellie home from the hospital after getting her trach and g-tube was also the day we moved back into our house after renting it out all summer while Scott did his internship. When they dropped off all her equipment this is what her room looked like.

It was extremely overwhelming and wasn't functional at all. Over the next few weeks we searched for things we needed on KSL and moved everything around over and over until we had a setup that worked. We can now have Ellie hooked up to her trach mask while in her crib, while rocking her, or while she plays on the floor without having to move around equipment. We can suction her in her crib, in the rocking chair, or on the changing table without moving equipment. We can see her monitors from the doorway, from the hide-a-mat where we sometimes sleep, or from the rocking chair without moving equipment. She can be hooked up to her feeding pump in her crib, in the rocking chair, and on her changing table without moving equipment. It took us several weeks of trial and error, but ever since we settled on this set up everything has been much more functional and it makes our days and nights go so much smoother. So here is a quick (or not so quick) tour and explanation.

On the left is the hide-a-mat that Scott and I took turns "sleeping" on for the first few months home. We feel comfortable enough and have a good enough system now that most nights we both sleep in our bedroom next door, but whenever we have a rough night with lots of suctioning, montior alarms, and adjusting machines then we pull out the hide-a-mat. Not to mention it has become a favorite book reading and movie watching spot for the big kids when we are hanging out in Ellie's room.
In the middle is Ellie's mini crib. Miles is still using our usual crib and the room was quickly filling up with all the things we had to put in it, so we were thrilled when we found this mini crib for a steal on KSL. And with Ellie's size we don't have to worry about her growing out of it anytime soon.
Under the crib is her pulse oximeter which reads her oxygen saturation and heart rate. We have her hooked up to this monitor with a lead that wraps around her foot whenever she is sleeping and periodically throughout the day. We rely on it to alarm and wake us up if her sats drop so we can suction her, adjust her trach mask settings, or increase her oxygen if we need to.

The pole next to her crib holds her feeding pump and bag. As mentioned in the previous post we use this pump to slowly run in Ellie's food throughout the day and night. We can only put a few ounces of formula in the bag at a time so it doesn't go bad. The pump alarms every couple of hours telling us we need to refill the bag. We have a nifty little backpack that holds the bag and pump that allows us to be mobile with Ellie during the day.
Below the feeding pump is Ellie's trach mask. That gray box is an air compressor. Yes, like the one in your garage...and yes it sounds like the one in your garage, too. Think of it as the ultimate white noise machine. The bottle hanging down from it has a heater attached to it and we keep it filled with sterile water. This does not have any type of alarm so we just have to keep an eye on it and refill it every few hours to keep it from running dry. The air compressor blows air through the nebulizer and it sends warm, humidified air down the blue tubing to Ellie's trach mask and keeps her lungs and secretions moist. I'll explain more about this when I do a post about her trach. We have her hooked up to her trach mask whenever she is sleeping and then periodically throughout the day. This last week she was sick with a respiratory illness and so we had to keep her hooked up to it around the clock. We can't make the tubing any longer than what you see in the picture or she won't get adequate humidification and the tubing needs to stay as level as possible or it dumps water all over her so it is a really short leash. The bag in the middle of the tubing just collects the condensation that builds up in the tubing so we empty that a couple times a day.
Below the compressor is our stationary suction machine with the suction catheter and tubing coiled on the floor in front of it (we also have a portable suction machine that we take everywhere with us). Again, I'll talk more about suctioning when I talk about her trach, but it is something we have to do multiple times an hour to clear the secretions out of Ellie's trach and lungs. There is a canister in the back that collects everything we suction. Think of it as a giant booger collector. We learned the hard way that this becomes very stinky even with regular emptying and cleaning. Thankfully someone gave us the tip to pour a little mouthwash in the bottom of it to keep a fresher smell. Works like a charm.
I have to mention that my dad custom made that little black shelf to hold these machines for us. Thanks Dad!

 That brings us to the glider. I have spent countless hours in this glider feeding and rocking all four of my babies over the last 6 1/2 years...and it shows. It is squeaky, stained, has flattened cushions, and the arms are barely hanging on. I am really really hoping Santa has room in his sleigh for a nicer and more comfortable glider for me. Maybe even one that is wide enough for Miles to come sit and read books next to me and Ellie. We'll see. We have it arranged so we can reach most of the things we need while rocking her like blankets, burp clothes (for a leaking g-tube, Ellie doesn't spit up), binkies, and syringes for venting because when we're rocking Ellie she is almost always hooked up to everything and so we can't just stand up and walk across the room to grab something. We are stuck. As much as Scott loves it when I yell out asking him to come get things that are out of my reach, this setup has made it so I don't have to do that as often.

This may look like an ordinary changing table, but in Ellie's nursery it is so much more. It is our work station. This is where we do trach care, trach changes, suctioning, g-tube care, diaper changes, and every other mean thing we do to Ellie daily.
On the far right you can see the oxygen concentrator hiding in the closet. This is another loud machine so we keep it in the closet to cut down some of the noise. The green tubing you see running across the room is the oxygen tubing that runs from the concentrator to the trach mask. Ellie doesn't normally require oxygen anymore, but the air blowing through the trach mask dilutes the air and makes her sats drop unless we have just a small amount of oxygen running through it. Whenever she has gotten sick she has required additional oxygen throughout the day so we just increase it to whatever amount she needs. This is the one machine we can't reach while sitting the the glider with Ellie so we have trained Miles how to turn it on and it is his favorite job. Whenever he hears us turn on Ellie's machine he comes running from across the house to turn on the oxygen for us. Why do I think that is so cute?

Our tour of Ellie's nursery will conclude with the supply closet (the other half of the closet is filled with boxes as well). Taking care of a trach and g-tube require A LOT of supplies. We are getting to know the UPS guy pretty well since he is delivering at least 10 large boxes to us each month with all her supplies. Digging through the piles of supplies was difficult at first, but then we developed a system for organizing them. When we get our monthly supply I sort everything out into weekly boxes. Every Sunday I get down a weekly box and change out all the things that we rotate once a week and then fill her trach drawer with all of the daily supplies for that week. I do the same with her feeding supplies in a feeding drawer. It is much easier to keep the drawers organized with only a week's worth of stuff rather than a month's worth. Also when I get the last box down I know it is time to call and reorder supplies so they will get there by the end of the week.

I know I have already posted this picture, but this really is the best representation of what our days are like. I cried and cried the first few weeks at home when these four walls felt like a prison to me. I am adapting and getting used to my new constraints and am finding ways to make it work. There is only one picture hanging on the wall in Ellie's nursery.

 It is Simon Dewey's "In His Constant Care". 

Whenever I feel discouraged (which is pretty much every day) I look at this picture and try to remind myself that the Lord sent Ellie to our home knowing that she would bring with her tremendous challenges. But I know that he will not leave us to face them alone. He is here every step of the way helping us make it through each day and night. I look back at everything we have made it through the last 6 months, on virtually no sleep none-the-less, and I cannot deny the blessings that have lifted us up and carried us through. And so we will keep taking it one day at a time.

Ellie's Voice

 When Ellie got her trach, one of the hardest things for me was the loss of her voice. She had a soft raspy voice that I loved and she had just started to occasionally coo, but once the trach was placed her voice fell silent. I'm finding that a lot of people don't understand why she cannot talk with her trach. So here's a quick little anatomy and physiology review. Vocal cords are soft tissue located at the top of the trachea. When air passes through the vocal cords they vibrate to make noise. Diagram A shows an airway with a trach in place. The thick black lines show how the air travels in and out of the lungs through the trach which makes it so no air passes through the vocal cords and therefore no noise is created. 

Our biggest concern and the question we asked over and over in the hospital was how would we know when Ellie needed something if she couldn't cry? Now let me clarify, she still cries, she just doesn't make any noise with her cry. We can easily tell when she is crying by looking at her. Her body tenses, her face scrunches up and her mouth goes into it's asymmetrical cry, but no noise. It's kind of like when a baby gets shots and they cry so hard they don't actually make any sound. We felt like we couldn't ever take our eyes off her. There was no worse feeling then when I was sitting next to her in the hospital reading a book while she was sleeping and then I would look up to see her arms flailing above her bright red face as she was silently screaming. How were we ever going to sleep again? The answer, we didn't. At least not for the first few weeks. You see, most trached patients get nursing hours where a home health nurse comes and spends the night with the patient so the parents can sleep. Some people even qualify for nurses during the day so they can go to the grocery store and other things like that. Well, our awesome insurance (said in my most sarcastic voice) will not provide even a single hour of nursing care for Ellie. So it's entirely up to us. We considered tying bells to her hands and feet so whenever she wiggled we would hear the bells and wake up. But ultimately, Scott and I just divided the night into shifts and one of us would stay in her room on Ellie duty while the other one slept for a couple hours and then we would switch. It was tough.

Pretty soon we started to recognize Ellie's new "voice". She always has a gurgly sound coming out of her trach that is caused by all of her secretions. Our ears have become trained to these sounds and can now tell if she's sleeping, awake, or crying just by listening to the degree of gurgling noise she is making. Basically the gurgling gets louder the harder she is breathing so it is quiet when she's sleeping, noisier when awake, and loud when crying. We still have to be in close proximity to hear these subtle noises, though. We also got a video monitor that has been invaluable. I can put her down for a nap and then just carry the monitor around with me and still be able to keep an eye on her. The only thing we hear through the monitor is if she is coughing or if her monitor is alarming, but the video is clear enough we can tell if she is crying by looking at her. We have finally gotten to a point where we are comfortable enough with Ellie's routine and signs that she is awake and needs something that we are actually able to try and get some sleep between all the suctioning, refilling her feeds and humidifier, monitor alarms, titrating oxygen, adjusting her trach mask temperature, along with all the normal baby nighttime wakings and needs. Some nights we get some sleep, other nights...not so much. One night I counted and I had to get up 20 times in 4 hours to do all the previously mentioned things. It's not always easy, but we feel like we have adapted enough that it actually feels doable most of the time now. The few times it has gotten to be too much my saint of a mother came and did a night shift with Ellie so we could get a full night's sleep.

The other hard part about Ellie not being able to make noise is she is not developing and learning how to use the muscles around her vocal cords that are vital for speech development. Remember how speech development is such a struggle for kids with 4p anyway? Add to that the huge obstacle of her trach and things aren't looking very promising for Ellie's speech. This is by far the thing I worry and think about the most with Ellie. I know it is going to be a long, hard, and frustrating road to get her talking. Right now Miles is at the funnest age where he is bursting with personality as he is constantly talking and saying new things. I can't help but smile and laugh at his expressions and enthusiasm with which he talks. The thought of not experiencing this with Ellie hurts so bad I can hardly bare it, so I try really hard not to think about it.

 A couple weeks ago we had an appointment with the ENT where he had Ellie try out a speaking valve for the first time. A speaking valve is a one-way valve that is put on the end of her trach that allows her to breath air in through her trach, but doesn't allow the air to come back out. This forces the air up around the trach and through her vocal cords. Diagram B shows how this works. As you can imagine, it takes quite a bit more effort to push the air out around the trach and so not everyone can tolerate wearing the speaking valve. They warned us that it is also very overwhelming for her because as soon as we put the valve on she is able to smell, taste, and hear her voice. That is sensory overload for a baby who hasn't experienced any of those senses in the last 2 months. I was hoping with all my heart she would be able to tolerate it so I could hear her sweet voice again.We put the valve on and it was like someone turned off the mute button on Ellie. She made a couple funny faces that were accompanied by little grunty breathing noises. Then she settled down and started calmly breathing. It was crazy hearing her breathe through her mouth and nose. I had forgotten about so many of the little noises that babies usually make. She started to cry a little and it was magical hearing a weak little voice come out of her.

Ellie with her speaking valve on

We now use the speaking valve on her a couple times a day and she will usually tolerate it for a couple of minutes. She's getting better at figuring out what to do with her tongue and how to control all the muscles in her throat and mouth that she doesn't usually have to worry about. We mostly just hear little cries, but we have gotten a couple laughs out of her that almost brought me to tears. There have been a few times where I felt like she was going to coo, but then she started coughing and gagging and I had to take the valve off. Someday I'll hear those sweet coos again. The big kids love hearing Ellie make noise. The minute Brynn and Mason walk in the door from school they ask if Ellie can wear her "talking nose".

Brynn laughing at a noise Ellie made

Their favorite thing is when she cries or coughs really hard and it shoots the valve off like a popped cork. They think that is the funniest trick that Ellie does. As Ellie learns to tolerate it better we will have her use it for longer periods of time, but for now we just enjoy the few moments we have of hearing Ellie's voice.