We just got back from our long-awaited ENT appointment and we are thrilled to share that Gracie is doing very, very well. So well, in fact, that they are ordering a cap for us to place over her trach during the day time. This means that Gracie is going to start practicing breathing totally through her mouth and nose- yahoo!! We will use our pulse-oximeter a few times a day to check her O2 levels and heart rate and just watch for any distress obviously, but that's it! We will continue to leave the trach uncapped at night. This process will strengthen her lungs and get her used to her natural airway while still having the safety of the trach in place. Then in October the doc wants to have another look at her airway. Yes, this is the same bronchoscopy (see 2-1-12 post) that was done this past January. I wish she didn't have to go through it again, but it is necessary. Then if all looks good, they may just schedule a sleep study and if that goes well, she can get her trach out. So there are still some steps to this process, but we feel pretty darn excited! The doc doesn't like to take trachs out in the winter (cold/flu/RSV) so it really depends on Gracie. If she is ready in October then great, but if not it will probably come out next spring. So either way we finally have some idea of a timeline. And all we really have to do is follow her lead! She is a pretty awesome little chick :)
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We are taking the summer "off"! We are taking a little break from in-home therapies and all of our various doctor apps are becoming less and less. As our big girl is now 15 MONTHS OLD we do have to get some shots at the pediatrician (meh) but that's true for any kiddo. So the only other doctor app this summer (knock in wood!) is on July 9th when we visit the ENT. This appointment is to check in with Gracie's airway and see how she is developing. In simple terms, he puts his finger over her trach and listens to how well (or not) she can breath. This appointment used to send me into full blown panic attack mode, but now that Gracie likes to cover her own trach and SCREAM and LAUGH, it is not such a big deal.
So hopefully we will get a better idea of a timeline for the trach, but he could also say, "Nope, not ready yet. See you in another six months to check in!", which would be fine too. Decannulation (taking the trach out) is NOT something to rush, and Gracie is thriving so we can definitely be respectful of where she is and patient in supporting her through it! So other than that we have been playing and having fun and Gracie has been EATING!! Easy Mac, hot dogs, cut up fruit and tomatoes, cheese... doesn't that sound so normal?! She is really into doing things herself right now, and it is a blast to present her with a plate of finger foods and watch her feed herself. It's like watching a little miracle happen right here in my own kitchen! It wasn't so long ago that she would try to drink her milk and it would just pool in her mouth and spill out. Now her throat has grown and opened enough for big bites of cheesy noddles to go down. It's amazing! Just for laughs, here are some short video clips. Hope it brings you a smile! http://youtu.be/d23lqcnpUOE http://youtu.be/-rPj4EyNJTE My musical theatre degree has served me well. First of all, I love what I do....or did...professionally outside of the home. I have been fortunate enough to perform, tour, choreograph, direct and teach. But theatre people are a rare breed and our training and personalities prepare us for literally any situation. We can adapt, improvise, pick things up quickly, or when all else fails, act like we know what is going on- ha! So when Ramsey and I were learning how to change a trach (pronounced like "cake", although I like cake a lot better), we just had to jump into this new role. Like any good actress I researched the part, studied my blocking (unhook trach tie and move stage right. Cross down stage center and insert new trach... all while singing Old McDonald Had a Farm.), and made it through opening night. Now that we are taking Gracie out into the world a bit more, I am really glad that I am used to people watching me because we tend to attract attention :) First of all, Gracie is pretty cute if I do say so myself. And nothing brings on public attention in a retiree town like a cute baby. But other parents, checkout people, etc are always giving us curious glances. And I totally understand their curiosity. Sometimes I don't feel like telling our story, so I just edited the script so I have a "short version" of my monologue on hand. But it really only takes one dress rehearsal at a new location because we are hard to forget. So now that people are getting used to this baby with a funny tube sticking out of her neck, we have store employees running to get Gracie a balloon, library ladies fawning over her....it's really sweet :) She is creating quite a fan club and even more people are rooting for her! And the silver lining to our family surviving this trauma is that every little new thing we get to do is super, super special. It was only a few months ago that I couldn't even drive Gracie to a doctor appointment without a nurse in the car because I had to suction her airway every five minutes. So the first car ride, the first walk at the park, the first time playing at the playground- those were huge milestones. So now it's like we have been sprung from jail! There are still tricky things, like we have to have hand wipes and sanitizer and we have to use a cart cover. The hardest part is that Gracie really shouldn't share toys with other little ones as they end up in mouths. And she LOVES other kids so I am trying really hard to find a middle ground. But overall we are having good first experiences, one little outing at a time. You are on your way Gracie- take a bow!!
So I totally left the house today without the SUCTION MACHINE!!!!!!!! yikes. There I was, having a lovely morning drive through Casa Grande, enjoying the day. I mean, it took me a good 30 minutes before it even occurred to me! Now, for those of you who have been to our house, you know that this is the most critical piece of medical equipment that we have besides the pulse-oximeter which Gracie is hooked to at night (it monitors her heart rate and O2 levels). I CAN"T believe I went driving off without the suction machine. It is our "go bag" containing, obviously, suction which is essential for anyone with a trach. It also has spare trachs and emergency supplies. But this should tell you how normal we are feeling with her trach these days and how well she is doing. We used to have to suction her every 5 minutes! Now, I forget the freakin' thing! So Gracie was napping in her car seat and everything was fine, but if she had started coughing or accidentally pulled out her trach I would have been in trouble. I just told myself that there is a hospital right here in town so I can just pull in there if something goes wrong. You know, just a normal day of running some errands, right? Omg.... So as soon as I realized I headed straight home, grabbed the bag and we went back out to the playground because why should that spoil out fun? I really used to have a mind, but I have long since lost it! I am telling you, my subconscious is saying "no more medical equipment or dr apps or medical supply orders or insurance calls!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!". And I think I can speak for Gracie and Ramsey here too. I know we will get there, but it is hard to be patient some days. The second that RSV season ends here, we are going to the zoo or something really fun- so there! ;)
Hi everyone! Thanks so much for all of the support yesterday! We got through it- phew! And everything was very smooth. Gracie was SO GOOD and she is already back to her happy, wiggly self today :) Boy, Phoenix Children's Hospital sure does know how to make it easy on kids and parents. It was organized, there were toys for Gracie to play with while we waited, and they were very focused on her comfort. They gave her some medicine to relax her as she did get nervous when all the docs came in to talk to us- she knew they were coming for her! Well, this magical cherry medicine made her skunk as a drunk- ha! She was laughing and clapping all the way to the procedure room where we got to stay with her until she fell asleep. They should really give mommies and daddies some of that magical cherry stuff...
So the main thing I can tell you is that everything looked great, but she will not be getting her trach out any time soon. We got confirmation that there is no cleft anywhere, no scarring or granulation tissue, and nothing unforeseen. Also, there are no procedures or surgeries to do- she just needs time to grow. We go back to see the ENT in 6 months to see how things have developed. But that's okay! You don't want to jump the gun on this one- although Gracie has other ideas as she pulled her trach out while I was giving her a bath this morning...sigh. But at this point, she just looks at me and starts breathing through her mouth while I get a new trach out. No biggie, right? ;) I swear, she is messing with me! So this is important to know- she can breathe on her own and does breathe around the trach, but the real problem would come into play while sleeping as her tongue falls back over her airway (see top left photo) where it should stay open (see top right photo). Now the bottom left photo is looking down her throat and that white tube is her trach. See the space around it? That is how she can move air to make some sounds. But you may also notice two little bumps sticking out just above the trach. This is the trachealmalacia and those pieces of skin move A LOT when she breathes. So the reason she is tricky is this combo of two airway obstructions. The bottom left picture is looking down into her little lungs- aw! We never got to see this before and it confirms that there is no lower airway problem . HOORAY. So the GI doc was there too and did an endoscopy. Everything looked normal and healthy so we are just waiting on some biopsy results to make sure there are no funny allergies or anything. If not, then G's eating difficulties may be purely based on her anatomical challenges which, again,take time and practice to improve. We all need to remember that she is a 3 month old as far as oral feeding is concerned, so she is doing very well! Have I mentioned that she has gained almost a pound and grown an inch in the past month?? Yay!!!!!!!!!!! So that's the long and the short of it. Our plans now are to start slowly introducing Gracie to more of the world (after cold/flu/RSV season). She is ready and so are we! It has been a long year to be holed up at home so each new experience will be so fun! Although, I was reminded to take it slow as I dared to run into a store with Gracie the other day which resulted in both of us becoming totally overwhelmed....one step at a time! So hooray for good news all around :) Gracie and I are having a total chill-out, pajama day today and enjoying every minute! Hope this finds you all well and thanks again for the support! Well, we sure did make lemonade out of our little upset at the pediatrician ;) It prompted us to see another ENT doc who is well-known in the valley and fellowship-trained at Cincinnati Children's Hospital. We actually like our current ENT, but with decannulation on the horizon, we just felt like it was time to have a new set of eyes on our little pumpkin. The information is pretty similar, but perhaps put in a different way. Here is the comparison:
Timeline: A laryngoscopy in March/April to determine if Gracie is a good candidate for decannulation. They will look for growth, stability etc of her airway and will determine if any surgery might be necessary to open the airway further or remove scar tissue. Of course, she may not need any surgery at all! Our first ENT sees many signs suggesting that Gracie will soon be ready for decannulation. The "new" ENT thought that she was not ready and it may be another year. But again, no one really knows until they have a look inside her airway. Diagnosis: Gracie has Layrngomalacia according to our first ENT. Our second ENT thinks that trachealmalacia is our main problem. The truth is, she has both. Which is "worse"....who can say? Gracie also has some symptoms of Pierre-Robin sequence, but no cleft palate, so this is why her case has been a bit more complicated than the average bear. But both docs are really happy with Gracie's progress and we have been assured time and time again that all of this will go away with time and growth. And let me tell you, we are counting our blessings because I saw and mom and her son in the ENT's office today that would trade places with us in a heartbeat... Hospital: Our first ENT is at Cardon Children's Medical Center where Gracie stayed those five (long!) weeks after she was born. The second ENT practices out of Phoenix Children's Hospital, where we would definitely have access to more specialized care, but then again, everyone at Cardon's knows Gracie literally inside and out. So we are getting new information daily as Ramsey and I explore and discuss our options to help Gracie Jane become tube free. And it will happen! We may not have an exact "when", but as long as she gets there in a safe, healthy way and comes out of this with no insurmountable oral aversions, then we can be patient! In the mean time, Gracie is as happy as can be! Well, there is never a dull moment around here! We had a little incident (Gracie is fine!) on Saturday night that really got our adrenaline pumping. And not in a good way. We had our first "emergency" trach change. Oy. Not bad for seven months at home with a trached baby, but not how we had planned to spend the evening. Now, the only things that would cause such a situation would be if the trach gets plugged (which wasn't the case) or if the trach accidentally comes out (which was the case). Gracie was getting a little fussy. I had stepped into the next room and Ramsey was on the couch in the living room with Gracie in her swing beside him. When a trached baby gets fussy, they get "junky" so you need to suction them out (kind of like blowing their nose when they cry). Well, there is a little filter called an HME over her trach to keep dust out and moisture in and it got STUCK! Eeeek!! She is so active that it must have gotten pushed further over the trach as she was playing/rolling on the ground. So I am in the bathroom and Gracie starts coughing because she's all junky so when Ramsey went to pull the HME off to suction her, he couldn't get it off. Obviously this is not good as poor Gracie is hacking away trying to breathe. So Ramsey pulled harder (which is the only way to get it off) and the whole trach came out! AHG!! I hear "help!!" from the next room and I come running down the hall and collide with Ramsey as he is running Gracie to her room. She is bigger and stronger now so she can still breath, but she is making this horrible gulping/gasping sound- seriously, every parent's worst nightmare... Fortunately we are a good team and well trained, so he was cutting off her trach tie as I was opening a new one. Poor Gracie gagged on whatever she was trying to cough out and barfed which just adds a whole new level when you have an open hole in your neck. But Ramsey knew what to do- he flipped her on her side so she didn't choke further and then I was right there with the new trach. And scene.
So Ramsey and I are sweating and buzzing from the adrenaline and Gracie just looks at us, smiles, and goes about her evening. Seriously, she was over it in about two minutes. I am still winding down.... So I am writing this not to scare people, but to illustrate how we must be ready to jump into action at any moment with a special-needs child. And although things are going very well, having an airway issue is a very big deal. It's like how surfers have to respect the power of the ocean waves, we have to respect the trach! "What was that?!" I cried as I jumped out of bed. "Wah!" replied Gracie!!!!!!!!!! Omg- we can finally hear her voice! She is cooing and honking and crying and generally expressing her opinion....:) Amazing Gracie has grown so much that she is able to move air around her trach. It's just so cool! We are also able to use the passy-muir valve and will continue to increase Gracie's time wearing it. Eventually she will wear it all day, even when she drinks a bottle. It actually greatly assists in swallowing, but one step at a time!
Our ENT was so happy to see all three of us doing so well. He went through a very dark and scary time with us and he is particularly protective of Gracie. It's very sweet :) So the doctor was able to tell a lot about Gracie's progress because he could hear her making noises and breathing through her nose as well as her trach. He didn't even have to scope her, which was a huge relief to me as it is so unpleasant. He did his traditional finger-over-the-trach routine which makes my palms sweat, but Gracie did not freak out like she used to. He also tried putting a piece of silk tape over her trach and she did pretty well with that too. We see him again in early January when we will discuss plans to decannulate her! The process may be much more straight forward than I initially expected- much more so than the NG tube. So the general plan is that the trach will some out sometime in March. Ramsey, myself and Gracie were all born in March, so Happy Birthday to us!!!!!!!!!!!! If you want a better understanding of what it is like to have a child with a trach, visit www.tracheostomy.com. They have a great sections on trach care, decannulation , FAQ's, and even a list of famous people who have had trachs.
Here is one example of daily trach care: Tracheostomy Care Rubbing of the trach tube and secretions can irritate the skin around the stoma. Daily care of the trach site is needed to prevent infection and skin breakdown under the tracheostomy tube and ties. Care should be done at least once a day; more often if needed. Children with new trachs or children on ventilators may need trach care more often. Tracheostomy dressings are used if there is drainage from the tracheostomy site or irritation from the tube rubbing on the skin. It may be helpful to set up a designated spot in your home for equipment and routine tracheostomy care. Equipment
*Youtube video of a trach change (it's not us, but I thought it was a good representation although Gracie does not have the same condition as this little pumpkin): http://youtu.be/CBM4f5aGrK0 *Here are some little boys getting their trachs out. I like that the parents get to take it out (get your tissue box ready- I cry happy tears every time I see this!): http://youtu.be/dLeBH_TFfsM http://youtu.be/1S0mTZaz7GY |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
March 2014
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