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Thursday, July 29, 2010

Trach Jail

We have been in "trach jail" for exactly 671 days. Ella Grace had her tracheotomy in September of 2008 at the ripe old age of 5 months. Most of the things we have been subjected to on our journey with Ella are not common for most parents such as feeding tubes and oxygen, but the trach certainly takes the cake.

As I write this, Ella Grace is scheduled to have a sleep study on August 11th to determine whether or not she can be decannulated (i.e., trach removed). So as we hopefully near the end of life with a trach, and because it's such a rare thing, I thought I would offer a glimpse into what life with a trached child is like.

There are many specific reasons why someone may require a trach but the simple explanation is that it provides an alternative airway to the nose or mouth. In Ella's case, her airway was so tiny and fragile as an infant the doctors were unable to intubate her for surgery so it was a necessity. And because we knew she would need future surgeries, and because she was also diagnosed with sleep apnea at that time, we had to keep the trach. Nearly two years later Ella barely resembles that tiny baby in the ICU (see pictures below) but the trach unfortunately remains!

I not-so-affectionately refer to life with a trach as "trach jail" because our family is indeed imprisoned by it. No one explains to you beforehand what to expect of having a trached child (not that there is always even time to) but I think that's actually a good thing. It's probably better to let us gradually realize the enormity of the situation rather than to lay it all on us at once. I'm sure if they did 99.9% of us would go running for the hills and they probably know that.

Before you can leave the hospital with your trached baby, you must complete several hours of training including trach care and learning about all of the equipment and supplies that go along with it. When we were finally able to bring Ella home and the medical supply company began delivering it all I was in shock...how could one tiny hole require such a massive amount stuff?! Turns out that in addition to physically invading our living space, the trach also keeps us from doing a lot of normal things as a family.

For the most part, Ella Grace only leaves the house for doctor's appointments which is pretty often, but not very fun! All of her therapies are provided in the home and we have home nurses who help us care for her during the day. Besides the fact that I look like a pack mule with all of the stuff Ella requires to have with her when we go out, the risk of infection is greater with a trach so less exposure to public places and people is best and Ella spends most of her time at home which means family outings are very rare occasions but we attempt it every now and then.

As most parents do, John and I also find that we would like to leave the house as a couple from time to time, but when you have a child with a trach a willing friend or even a highly-recommended babysitter just won't do. Only someone who has the proper training can watch Ella and in our world that includes only my husband, myself or one of our home nurses. Unless we have a nurse to watch her, we can't leave the house at the same time. (Thank God for our home nurses!)

The general care that comes along with a trach can also be overwhelming. Trach care must occur twice a day including cleaning the areas and changing the ties (that hold the tracheotomy tube in place) around her neck once a day. Close monitoring of the neck and stoma are also required and there are creams, powders and gauze pads to help us maintain it. The trach itself must be changed out once a week, or sooner if she gets sick. Trach precautions must be used while bathing - no water can go down that hole! Suctioning is one of the least fun activities associated with a trach and I'm sure it sounds disgusting to an outsider so I won't go into detail. At night Ella is placed on a ventilator for pressure support/C-PAP and provides warm, humidified air to the trach. We also have oxygen on hand in case she ever needs a little help. And because risk of infection is higher with a trach, and she does get sick more often, hospitalizations are very frequent.

So please, say a little prayer that we'll be paroled in a few weeks for good behavior (we have been good, right?) and I will look forward to writing a future blog about life AFTER trach when we are free at last!

Thursday, July 15, 2010

Fireworks through the Trees

This past 4th of July was an off day for me. For the most part, those "pity party days" are fairly few and far between, but they still come on...usually right out of nowhere.

We were glad to have gotten Ella Grace home from the hospital that Friday, and she was doing well. After Nana and I procured her 4th of July outfit, I was excited to take her to church and show her off that morning - a rare non-medical related outing. But just before it was time to leave Ella fell asleep and, still recovering from tracheitis, began to require oxygen so church was now out of the question and we stayed home all day.

At around 6 p.m. our night nurse arrived so John and I were able to leave the house which I was sure was going to make me feel better. At this point, I just wanted to see some dang fireworks!

Upon arriving at the park, I quickly realized this was not a good place for me to be in my funk. It was full of families with the children dressed up in their 4th of July outfits running around, looking cute, and having a blast. I managed to stop the tears with a rack of ribs, and made an effort to try and not focus on the fact that Ella Grace wasn't with us, but it wasn't easy.

After a few hours of rib-eating, sulking and people watching, dusk began to fall and it was finally time for fireworks. Since we had never been to see them at this park before, we didn't know what position we should be in. We picked up our chairs and began wandering around. We headed towards the crowd with the most people and stopped at a spot that happened to be vacant (coincidentally, right next to a trash can) and set up camp. Just then, a "warning shot" was launched and we realized that not only was our spot smelly, but our view was going to be blocked by a giant tree.

With the show now starting, we picked up our chairs and moved again to get a better view and found another spot that seemed to be suitable to settle in for the show. Once we sat down, we realized that our view was still being partially blocked by a smaller tree but we could see pretty well through the branches. With the crowd and the show now in full-swing, I told John we would just stay put when he started to get up to move again.

As I engaged in the fireworks through the limbs of the tree, my mind began racing with all kinds of thoughts: how happy I am to live in this country, how thankful I am to have John still sitting beside me, and how much Ella Grace would love the fireworks. There were times when the fireworks were launched high enough that the tree no longer blocked our view, and there were times when they weren't launched very high at all and we could hardly see them. But for the most part, they were launched somewhere in the middle and we still had a pretty good view. I even forgot that the branches were there at times.

I looked around at the other families who appeared to have a clear view and starting thinking to myself how this was a lot like being the parent of a special needs child. You still get to go to the fireworks, they are still spectacular, but your view is different. The experience was certainly not the same for me as the other moms there who were holding their children on their laps and able to see the awe on their little faces. Though my lap was empty, my heart was full. I told myself that next year Ella will be with us, she will be older and healthier and she'll have an EVEN cuter outfit!

Who knows if it will work out this way, our plans rarely do these days, but that's okay. Hope for the future and appreciation for the blessings we have today is what gets us through. While our view may not appear to be ideal to others, we are still glad to be at the show.

Thursday, July 8, 2010

"Where Everybody Knows Your Name..."

This song (the theme from Cheers) pops into my head every time I enter the children's hospital. I have lost count of the number of days that Ella Grace has been hospitalized, but I do know that we've never gone longer than three months at home continuously so my best guess is that it ranges somewhere between 1/3 to 1/2 of her life.

At first it's awful. After you give birth, the hospital wants to get you out of there as quickly as possible but keep your four-day-old, barely-five-pound infant for an indefinite amount of time. I will never forget that night leaving the hospital for the first time after I was discharged to drive 20 miles home while Ella Grace stayed in the NICU. It was heartwrenching. But over time, leaving Ella at the hospital gradually became a normal part of our abnormal life.

We are lucky to have access to such great care where we live for which I am very grateful and our proximity to the children's hospital is very good - I know of families that have to drive hours to get their child to an appropriate care facility. And once you become a regular (or "repeat offender") at the hospital, you start getting known by the people who work there so when you go, it becomes a homecoming of sorts. You begin to know basically all of the nurses and doctors and they are glad to see you (not glad you have to be there, but glad to see you) so it's kind of like we're just visiting old friends.

There is the usual cast of characters at the hospital including our doctors, nurses, and therapists, but some of my favorites are the "extras" like "The French Fry Guy" who I repeatedly see in the cafeteria loading up an entire styrofoam container full of french fries every single time. I must admit I am a bit jealous of his devil-may-care attitude when it comes to indulging on that greasy golden goodness since I myself feel like diving into an entire pool of fries at times. And there really is no concept of calories during a hospital stay anyhow. "Treats" are a hallmark of any stay, and the amount and nutritional value of those treats directly coincide with the length and severity of the stay.

The wonderful ladies from the FOCUS (Families of Children Under Stress) group always stop by with chocolate and other goodies without fail. Boy do I love those gals. The longer you stay, the more chocolate they bring you. They get it.

Then there is the lady at the front desk who always gives me a smile and makes friendly conversation as if she's known me for decades even though we've never had a 'real' conversation. Turns out that lady is actually a twin and they both work at that desk at different times. I only realized there were two of them when I saw them together in the cafeteria one day. That really freaked me out. I cannot tell them apart for the life of me but still think "she" is really nice.

There are also the security guards, the sweet old ladies in the gift shop, the child life volunteers, and the chaplains who always come by to say hello.

Coming by to see Ella while she is in the hospital is a must for many people who have met and/or cared for her in the past when they get word she is there. Because Ella has a trach and is on C-PAP at night through a ventilator, she must stay in ICU. We've been in all the ICU's (pronounced Ick-U's)...NICU, PICU, TICU, so she is pretty well-known in the ICU community. During any given hospitalization a random someone will inevitably pop in to say, "I heard Ella was here!" and demand to see what she is wearing.

Since the very beginning my mom (Nana) and I have made dressing Ella in adorable outfits with matching bows in her hair an Olympic event, and she has become notorious for her fashionable-ness. (Plus she is pretty darn cute!) So she has definitely earned the title of "Best Dressed Baby in the ICU" and that is why I felt it was appropriate to be the title of my blog.

Dressing Ella is one of the few things we can find joy in during a hospital stay (aside from the chocolate) and at this point, frankly, we have a reputation to uphold! Just last week while Ella was in for a trach infection I was nearly scolded for not having gotten a 4th of July outfit for her yet when asked what she would be wearing for the big holiday.

In her off-time, when she is home, Ella still looks just as cute every day with a giant matching bow in her hair. So we'll just enjoy dressing her up for our own entertainment here at home for the next 1 to 89 days until our next hospital debut.

Sunday, July 4, 2010

The Blog is Back/Lessons They Don't Teach You

So here goes blogging again. You can still follow Ella Grace's progress and medical updates via her Caring Bridge site at www.caringbridge.org/visit/ellagracemusial

This blog is now completely devoted to being my online journal as the mom of a medically fragile/special needs child. Life with Ella is hectic and stressful, of course, with all of the doctor's appointments, procedures, therapies, etc. But beyond that, we Special Needs Parents (or SNPs as I will refer to us) experience everyday life and society a lot differently. With this blog I hope to bring some insight and awareness to OUR world so that others can develop an understanding and maybe even change their ideas about families like ours by helping to eliminate "the fear of the unknown". So here goes installment number one...

Lessons they don't teach you in school
I'll admit it. Before I became an SNP I was scared of people that were different. I feared them because I didn't know how to act around them or what to say.

But let's give ourselves a little credit: as humans we naturally fear what we don't understand and it's human nature to be curious about anything that is out of the norm for us. It took me a while after Ella Grace was born to figure this out, but that's why people stare!

In the beginning I would get really annoyed with the stares, like it was a personal attack on my child. But eventually I realized that the majority of people aren't meaning to be rude. They're just caught off-guard and are curious about something that is different from what they normally see like...say, maybe a baby with a feeding tube coming out of her nose?! Did I ever see or know what a nasogastric tube was before Ella Grace was born? Not so much. And unless you're in the medical field, chances are you haven't either. And so lesson #1 was learned.

Lesson #2 came shortly after: most people aren't even aware that they are staring (or "boring holes" as we SNPs may describe it on a bad day). And so I realized that offering a quick smile to the starer can be very beneficial to all parties involved by making "the starer" aware of their behavior either prompting them to feel comfortable to make conversation or to go on their merry way.

The bottom line is that regardless of what is going on with our child, they are OUR CHILD and we are proud of them and love them just as much as we would a typical child. We want to talk about our children but find people in general feel it's rude to ask questions. For me personally, this is not true. I am happy to talk about Ella Grace. I'm not embarrassed. I'm not going to be upset that by asking a question you are pointing out that she is different (we tend to learn this pretty early on from the doctors!) so please, ask away.

Yes, it can get tiring repeating things over and over, and we have our "days", but for the most part we are dying to talk about our kids just as much as you are. And the fact that most people are afraid to talk to us can make our world feel very isolated at times.

So the next time you see one of us around, give us a smile and ask a question or make a friendly comment. Something as simple as "How old is she?" or "That sure is a pretty bow!" can make us feel like we are part of "normal" society and open the door for a conversation.