Dakoda Ryan Probst
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Hello! My name is Debbie Probst and I have a little guy (Dakoda Ryan Probst) with a trach who is 9 months old now, born on 12/3/2000. Kody got RSV at 5 weeks was intubated for 1 month, with 3 extubation tries...The 3rd was a charm however from being intubated suffered subglotic stenosis and scarring beneath his vocal cords. After going back and forth to the hospital several times, sometimes on steroids to help out with the swelling causing him to have stridor and retractions, etc we finally had to have him trached because his O2 saturation was going down one night while he was sleeping. Every moment was getting scary, Kody was miserable, gassy from trying to eat and struggling to breathe. Finally we had no other choice then to have a tracheostomy done. He came home at 3 and 1/2 months at about 7 and 1/2 lbs, just maintaining his weight in the hospital. He was basically a newborn, having been sedated and in a hospital bed for so long couldn't grasp objects, hold his head up, etc. Kody also has low muscle tone so we have a occupational therapist work with him which has through the past few months definitely brought him around. Kody can now sit up on his own and loves jumping in his exersaucer, gives 5, waves hi and bye-bye. He started rolling a ball back and forth to his big sister Kassidy who is 3 and 1/2 years old, just last night. He is up to 16lbs probably, doc appt on the 21st with his ped and he'll go to see his surgeon on the 24th.
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Update - February, 2002: Since Sept of 2001, Kody has given us a few scary moments through the fall/winter, but we are definitely making progress. Before our big trip to the hospital for a follow-up bronch, we managed to make a trip to the beach for over a week, in Sept of 2001. Kody was a surfin', beach lovin' guy and did great. See the latest pics...Never would we have dreamed we could take him to the beach!!! Sept 24th, we had a bronch done, scared to get the trach out but anxious also to know our baby was beyond this crazy time. The bronch resulted in some good news, he was getting better, had about 40% of his airway, but a lot of his cilia were damaged or short or saturated with secretions, so it was best to wait out the next few months to see what Spring would bring.
Through the Fall/Winter Kody has been receiving the synergis shot monthly to highly decrease the chances and/or severity of getting RSV, beginning in Sept 2001. Guess what, in November, days before his next shot was due, Kody was starting to struggle with his breathing, within just a short hour that I stepped out to get some exercise, does wonders for all those Moms and Dads out there. We managed to bring him out of it with some oxygen, after doing the normal suctioning and quick trach change efforts. But that evening, after getting him to sleep and on his monitor, his sats were not good so we took him to the ER. He was tested for RSV, which came back positive, but how -- he was getting this shot, which was supposed to take care of RSV. Well, as it was explained, his body was on the downswing of having the good stuff in his body and was about due for his next shot so he was more susceptible to getting RSV. Fortunately, we caught it at the beginning, had a short hospital stay and went home on O2, nebs, steroids and antibiotics. Through all this, Kody was most intrigued by all the new faces he could see through the glass windows and waved to anyone, he could get to look in at him. So home we went and through the winter have had some small 'things' brewing but we have been able to manage them at home with lots of PT, attentiveness, oxygen and nebs. We do have nursing, which has been a blessing, allows us to manage mild sicknesses at home and gives us mental breaks so we can sleep.
It is Feb now, I must say we have made leaps and bounds in many ways. Kody is getting much stronger physically, amazing to see how much he has achieved! Kody started crawling in early Jan 2002, is trying real hard to pull up on anything he can, to try to stand up. He is saying MaMa, Ma (for more), up, PaPa, BaBa for his sippy cup, and ah-ahhhh-ahh ('find me' when we play hide and go seek). Kody is eating table food, weighs in at about 17lbs and is a 4 year old just like his big sister, if he has anything to say about it. Kody remains this bundle of complete joy, he lights up the room and everyone he comes across, just the same as every other baby in Aaron's page...I continue to be amazed at his disposition, having gone through what he has, babies are amazing! I am sure I can speak for all the stressed, tired Mommies and Daddies out there, we would do it all over again to have this priceless, enjoyable times with our miracles.
We have about 2 months more before our next follow-up bronch, that will take us to March 2002, about 1 year total of having the trach. We'll see what that day brings us, but no matter what the decision on that day, we know if we keep our hope and faith, Kody Ryan will outgrow his subglottic stenosis and be on his way to an incredible future!
Update January 2004: Going back to March of 2002, Kody was a little over one. We continued with Physical Therapy until Dec of 2002 to help him along with his low muscle tone and motor skills. Life was pretty uneventful and somewhat normal through the Spring/Summer of 2002, took a lot of beach trips and just enjoyed each day. By the end of Sept of 2002, after about a year and a half of physical therapy, usually weekly sessions, Kody began to walk just after a vacation to the beach. (Lucky us, chasing after a little man with a trach at the beach would have been a bit more stressful than watching him sit stationary on the beach.) Shortly thereafter, Kody 'graduated' from PT - a happy, tearful time. He had caught up for the most part but still couldn't do the stairs cause his legs were too short! Kody continued to gain weight slowly, about 21 lbs in Sept 2002.
The winter of 2002/2003 brought about some colds that gave us a challenge but for the most part we were able to handle them from home with the help of nursing, oxygen steroids and neb treatments. Kody's speech was progressing with the help of his speech therapist. We continued to use the passy-muir often....starting at increments of just a few minutes working on up to an hour or so. Kody has 'poor lip awareness' as his therapist describes so we just keep working with him to get him to learn to make the different sounds...he's getting there. Kody still has reflux but found that his airway was protected through a barium swallow and upper GI series test. Great information for going forward into the Spring.
The Spring/Summer of 2003 brought about some exciting news from a bronch he had done in May. His airway looked significantly better and they removed some granuloma, caused by just having the trach in his airway. Kody's surgeon was impressed by the language and strength of his voice even with the large mass of granuloma he was able to remove. This brought about our first try to decannulate in June of 2003. I removed Kody's trach in the doctor's office, something I don't even think Kody was aware of....he just continued playing, running around, etc. After about an hour or so we migrated up to the Peds floor for our overnight stay. Kody ate a hearty dinner, played, etc. He seemed to be unphased by not having his trach. We gave
him some doublestuffed cookies as a treat and the evening, little did we know it would get his reflux going and cause a coughing episode for about an hour. Everyone stood by and watched as he struggled, panicked, gasped trying to figure out how to deal with his reflux, coughing and secretions, without the trach. Finally after an hour, he tuckered out and fell asleep, his sats remained fine during the episode so the doctors decided to let him try to fly the next journey, getting through the night. Kody did very well through the night, surprising all. He did have a coughing episode at about 3am but some good advice given by an attending ENT proved to be extremely helpful. He said we should cover his stoma, very gently when he coughs to give him the extra strength of a good cough, until his stoma closed and that I did which made all the difference in the world.
Fast forward to the next morning...Kody had a pretty uneventful night and we were released, trach-free at about 11am. The nurse gave him a neb before heading out which got some secretions moving around so our journey home was full of very scary, tense moments. He had coughing episodes as we journeyed home which sent Kody into a 'panic attack' I guess I could call it. The ENT at the hospital said it is fine, just talk him through, he is learning how to work through the new breathing,
coughing, etc. So I did....When we arrived home, we could just tell something was not 'right' with Kody, he doesn't fuss or cry and he was....finally I asked him if he hurt and he said yes. We figured he was probably sore in his throat and chest from all the coughing so we gave him some Tylenol to take the edge off, Kody was back to his normal self and we believed we were on our way. Kody fell asleep earlier than normal from a very eventful 24 hours and we hooked him up to check his sats, upper 80s, not a normal reading for Kody is what we were getting. We could also hear he was tight, his stoma was very close to completely closed. We called the ENT and they quickly asked that we bring Kody in, they would probably retrach him. I requested to give him steroids to get him through the transitional time of learning to cough differently but they didn't go for it. We arrived at the ER soon after and several stopped by to make their own opinion....all came down to the same thing, he was still too borderline to not have a trach. They tried to retrach him with a trach, catheter, even scissors but his stoma was closed...off to the OR. Soon after, Kody was breathing calmly again, as we are used to seeing him...not the outcome we wanted but what was best for Kody. We were told that we would get another try at decannulation at the end of the summer. The surgeon decided to wait it out through the winter instead...
Some suggestions just as a parent speaking from an experience, with no medical background....Anyone going through a possible decannulation with a little one with or without reflux, learn from us....ask about covering the stoma in the transition period if your doctor doesn't believe in covering the stoma with gauze. I guess trying Kody on something that got his reflux going was a good test but be aware of the excessive coughing if you feed them something that could trigger reflux....Ask about giving a steroid to your little one just as a precautionary in the transition period of adjustment without the trach and think about Tylenol, etc to take away the extra discomfort your tough little guy/girl is going through...coughing, etc.
It is now Dec/Jan 2004. Kody is up to about 30lbs and getting bigger and stronger everyday. We just zoomed through the holidays. We entered the
Passy-Muir Holiday Photo
Contest and managed to get Honorable Mention, very exciting, how could anyone pick, these special kids are all winners! Kody continues to grow...he is actually out of his 2T clothing and getting into 3Ts. His speech is improving with more sounds and stringing words together to make complete thoughts and/or requests to those around him when he wants to play, is hungry or just wants to tell you something. We plan on going for another try at decannulating in the Spring/Summer.
We are expecting Baby #3 in early May so we will plan Kody's special day soon after....2 times a charm? Whatever the outcome, as I always say, I know we are blessed with a beautiful, loving little boy. We have learned so much from this experience and I am not just talking about how to be a 'nurse', smile. We appreciate every day, every second. We have made some incredible friendships along the way that I know will be lifelong.
Until next time...Take good care.
Update, Sept 23rd, 2004: It's been a busy Summer for our family. We had our 3rd baby, Gracelynn Rose, Kassi our 6 and 1/2 year old started first grade and Kody is coming up on 4 years old on December 3rd and has some really GREAT news!
Through the Winter/Spring of 2004, we worked at using the Passy-Muir more and more, working up to using it several hours at a time and even during naptimes, with no difficulties. His speech continued to improve significantly with the help of his special Speech Therapist, Lea. Kody was working on being able to voice the different sounds of the alphabet that were difficult like H's, F's, S's, etc. due to having the trach and having 'poor lip awareness'. We progressed on to completely capping Kody in the Spring which was very advantageous for preparing Kody to be decannulated. Capping helped to give Kody the new feeling of breathing, eating, running, sleeping that he would have without a trach so he could learn to settle his self down but taking deep breaths and using his mouth so he wouldn't panic, in advance.
On July 14th, we had Kody bronched to see how his airway was looking, in hopes of another try at decannulation. Different from his bronch last year, Kody did not have granuloma that needed to be removed and his cilia in his airway looked much better that in the past. The surgeon explained these hairs help to move the secretions up the airway when he coughs and in the past Kody's were very damaged, saturated with secretions and even completely broken off. Fortunately in the last year, they have gradually repaired themselves, all steps towards recovering from RSV as an infant.
In preparation for Kody being decannulated, we also had a milk study done to determine how severe his reflux was which gave us more good news -- his reflux was no longer severe as it was a year ago but now minor. His gastro doctor pulled him off his reflux meds and Kody did just fine without them. As a result of the bronch and milk study, the surgeon gave the go ahead to schedule an office visit to once again give Kody a try without his trachy.
On July 22nd, we met with Kody's surgeon in his office at about noon and removed Kody's trach for the last time. To everyone's happiness, Kody didn't have the coughing caused by reflux that he had last year which inevitably caused his airway to swell and need the trach again within 24 hours. With this try at decannulation, Kody didn't cough at all and he had an uneventful night in the hospital with his Daddy. They did keep a blowby near him through the night and we did to keep some moisture around for the first 2 weeks while sleeping at home, per a suggestion from another parent who's cool guy was just decannulated. Certainly can't hurt....we have found that parents sometimes know tricks that help along the way from their experiences that surgeons just may not realize...
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So it's now been 9 weeks without a trach and Kody is doing very well. He is growing leaps and bounds, up to about 35 lbs and into 3t clothing and moving on to 4ts. We have a pediatrician's appointment in November to see where he is on the growth chart and although he is still on the smaller side, he has definitely caught up on his growth. We have gotten to the beach a few times over the summer and although we still have to be careful around water, we know he can handle a little splash. The surgeon has advised it could take up to a year for his stoma to fully close and if it has not by next summer, he'll surgically close him up.
Kody is noisy when he drinks from a sippy cup, when he sleeps and when he gets too wound up from running around but is handling breathing without his trachy well. Kody had to learn to open his mouth when getting winded and just to breathe differently, an adjustment period for him....Kody sleeps in a Spiderman/Hulk big boy bed now in our room and we usually put him on the pulse ox just to be sure. He is still getting his xopenex and pulimcort nebs at night, just as maintenance. Until just recently, we had thought his stoma may be closed but in the last few days we have noticed some secretions coming through his stoma and can hear some air seeping through. So strange to go several weeks thinking his stoma was closed then to hear air and see secretions. This could be a reaction in the change of season or his first cold without a trach, time will tell. But otherwise, Kody seems to be breathing like a 'normal' little guy, without a trach.
To all those parents, still waiting for your angel's special day to be decannulated, Hang in there, Your day will come. The past 3 and 1/2 years were challenging and scary but patience and prayers and support have certainly paid off. Our life style has changed without the nursing and all the supplies and extra precautions we had to take while Kody had a trach but it's a time we will certainly never forget. We plan to stay in touch with all of our trachy friends and are always willing and honored to talk to any parents with questions or who just need to talk and sort thoughts/questions through. The friendships that we have developed with other parents who have babies with trachs are priceless.
Take a look at some pictures of Kody being decannulated and of Kody splashing in the water and being cool. We'll continue to send updates.
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- Beach Photos 2004
Till next time....
Debbie Probst - Kody's Mommy
