praying for luke: Trach-Free Life

We waited for so long for Luke to be able to breathe without a trach, that it’s surprising how quickly we have become accustomed to trach-free life. We brought Luke home from the hospital September 5 a trach free kid after his second airway reconstruction surgery. We were both so excited and happy, David and I both cried with tears of joy as we pulled away from the hospital.

That night, we were struck with how easy Luke’s bedtime routine had suddenly become. Instead of giving him a bath and doing trach care, we now only have to put him in the bath and then put jammies on, say prayers, and say “stay in your bed.” Even bath times are easier because we don’t have to constantly monitor him like we used to to make sure he didn’t get his trach in the water and aspirate.

I can’t begin to tell you how much time and frustration we are saving. Not having to stop every 10 minutes to look for a lost cap or HME, not having to stop and suction (especially during meals), and getting to leave the house with nothing but Luke and my purse saves us so much time and energy. I am so thankful! My friend Becca Taylor and I took Luke for a walk to the park the other day, and we both commented about easy it was to bring Luke without having to take all of his attachments with him.

Luke was fairly quick to recover after his two-week stay in ICU. He was in an induced coma and paralyzed most of the stay while his airway healed from the reconstruction. This caused him to be extremely weak when he woke up. He was able to walk very short distances with a great deal of assistance from us before he left the hospital, but when we brought him home, he chose to crawl for a few days before he got the confidence to try and walk by himself again. He’s had to relearn several things with the help of his physical and occupational therapists. For example, Luke is just now traversing stairs with the confidence and skill that he had before surgery, and he was able to jump before surgery, and he hasn’t relearned that skill yet.

Our hope was that Luke would improve drastically in his eating skills once he was decanulated. He did improve some right after we got home. He started eating over 140 g in less than 20 minutes, where before he was only getting 120-130g in 20 minutes. But jut a few weeks later, he started declining, and he’s been fluctuating ever since. He plummeted to only taking about 70g-80g in a sitting on average. We returned to the full strict protocol that we learned in the feeding program in January and saw some improvement after a few weeks. Right now we seem to be in an upswing. Luke’s been taking right around 100g in a 20 minute sitting. That’s equivalent to a pudding cup or toddler yogurt cup. He’s also been doing well drinking his formula he takes about 4 oz of milk in a sitting along with his food. We have not improved with texture as we hoped he would after decanulation. He still gags and chokes on the smallest thing, even a half of a grain of rice. Even applesauce and Cream of Wheat have enough texture to give him a challenge. I’m working with his nutritionist and we are considering returning to the day patient feeding program in the summer to try and get him to improve on eating things with texture and crunchies like puffs and Cheerios. That’s a little ways down the road, and we have miles to go before we’re there.

In some ways we live in a completely different world, and in some ways, it hasn’t changed that much. We’re still dealing with diapers (more on that later) and frustrating and difficult mealtimes. Luke is an ornery three year old who loves his independence. He tests boundaries constantly. He likes to see how many times I will tell him to do something before I get on to him. Typical three year old. :) I try to remind myself that if God hadn’t have given Luke that tenacity and persistence, he would not have survived his first months of life, or even the last hospital stay. I have to be thankful for that too, even though I frequently get frustrated and tired of my buttons being pushed constantly.

Tomorrow we will embark on our next great adventure: Potty Training! I’ve been working with Luke’s Occupational Therapist for weeks preparing for this time. I’ve also purchased a book, Toilet Training for Individuals with Autism or Other Developmental Issues. Luke is not autistic, but he has several of sensory and developmental issues that autistic children have. I’m so glad I bought the book because it’s been giving me tips on how to begin thinking about the process of potty training a kiddo with special challenges. This is the only book of any kind that I’ve read on the subject, so I can’t recommend it over any others, but I highly recommend the book for someone feeling daunted about potty training a child with special/developmental/sensory issues.

So, I think I’m all ready with big boy underwear, pull-ups to go over the underwear to protect our new carpet from messes, a homemade sticker chart, a special beloved toy just for potty time, and armed with knowledge and support. I think I’m prepared for us not to get it the first time. I’ll be disappointed, but I’m trying to prepare myself for him not being ready. We’ll see. I’d appreciate everyone’s prayers for Luke’s success and my patience and sanity over the next few days of intense potty training “boot camp”.

One thing that has improved for Luke significantly since decanulation is his speaking. I have been surprised by this because Luke’s trach was not physically preventing him from speaking. When he would wear the cap or the speaking valve, those would allow him to send air over his vocal chords and create sounds. So we weren’t planning on seeing a huge improvement in that area immediately after decanulation because nothing really changed in that department. But just a few weeks after we got home, Luke started imitating our words more and more frequently. Over the past several weeks, his vocabulary has drastically increased. He is not saying anything very clearly, but he’s trying to say just about everything. He particularly likes “h” words: “help”, “home”, “happy”, “hippo”, “hamper”, “hammer,” etc. I think the funnest one so far has been when we heard his nurse call to him for his bath, “Get that little naked hiney (bottom) in here!” And we hear him holler back at her, “HINEY!” Priceless. Some of our favorite words that he uses are: “Nah-nie” (Night-night), “honey,” “pss” (please), and “ah-hum” (awesome). It is fascinating to watch the transformation from him using 95% sign language to communicate to about 85% verbal communication. I think David and I are becoming less worried that Luke’s speech will be affected forever from the hyponatremia (low sodium issue) he had when he was 10 months old. I’m very encouraged that he is really trying to say everything, even if nothing he says is clear yet.

I don’t think I really allowed myself to believe Luke would stay decanulated (even though he wasn’t having any problems breathing) until Luke’s bronchoscopy in late September. Luke’s ENT surgeon, Dr. McClay, said at that time that everything looked great. He is concerned that at some point the cartilage that makes up the airway reconstruction will begin to lose strength and begin to sag. We had another bronchoscopy the week of Thanksgiving. At that time Dr. McClay said that the reconstruction still looks great and the airway is completely open. Dr. McClay was very impressed with the sound and quality of Luke’s voice. He said that we likely won’t have to get another bronchoscopy unless Luke starts becoming symptomatic (starts having trouble breathing) down the road. We’ll call him to touch base in early spring.

So what’s ahead for us? We will be very busy over the next several months. We’re planning on traveling a lot for the holidays. We went to Oklahoma for Thanksgiving. That was such a great time, because David and I were able to leave Luke alone with his grandparents at times instead of one of us always having to be there with him. I actually got to go see a movie with my sisters-in-law. It was “ah-hum”! ;-) We’ll be traveling to Albuquerque for five days over Christmas. Then in January we’ll be traveling with my family to Ventura Beach in California for a week-long vacation.

In February or March, depending on if we can keep Luke healthy and out of the hospital through RSV season, we will go to Medical City for a heart catheterization to prepare for heart surgery. Then Luke we are planning on Luke having his third and final heart surgery, called the Fontan, in March or April. This is supposed to be the easiest and safest of all three of the series, but after almost losing him again in August, we’re not taking anything for granted. As always, we appreciate your prayers as we prepare our family mentally, physically, and emotionally for the heart cath and the Fontan. I trust God will take care of our son, I just really don’t want to go through another scare like we did at the first extubation trial in August. Even the heart cath scares me. The first one at three weeks went fine, but after the one at 11 weeks he came out with a different heart rhythm and they had to shock him to get his heart into a stable rhythm. And he got Cytomegleovirus after the third one which kept him in ICU for a total of three weeks afterward. Luke never does anything the way we expect him to, so we are gearing up for a spring full of stress.

We’re kind of on a time crunch for this last surgery also because (in case you haven’t heard) I’m due with our second baby in mid-May. We really would like to have Luke’s surgery and hospitalization behind us so we can focus on the birth and bonding of our second child. We did genetic testing when I was pregnant with Luke to find out if Luke’s heart defect was something we could expect our other children to inherit also. The results were negative--we have no reason not to expect that our second child will be perfectly healthy. David and I are still “gun-shy” though. We had a sonogram at 13 weeks to test for chromosomal abnormalities to indicate Down’s Syndrome or Spina Bifida. The sonogram at that time did not give the maternal fetal specialist concern, so we can check that one off of our list. We will have a level two sonogram/anatomy scan on December 14 with the same maternal fetal specialist and also a fetal echo with Luke’s cardiologist on the same day. These are the same tests in which we found out the tragic news that Luke was going to be very sick. We are very anxious to have the sonograms, but are also believing that God is going to carry us wherever he leads us with this baby, healthy or not.

So we ask for your prayers as we seem to be closing one chapter of our family history and beginning a new one. We try and live day by day by the grace of our Lord. He leads us and he keeps us. He’s never let us go. We are so thankful for everyone’s continual support, encouragement, and prayers. We love you!

Blessings,

Rachael, David, and Luke