Wow, I can’t believe it’s been over a month since I last wrote on Addi’s page. I apologize to Addi’s supporters/followers for not keeping her page updated. I will try to post more frequently on Addi’s progress as she continues to get better and better. She’s actually been doing amazing, but before I get into that I want to take a minute to say a big Thank You to an awesome group of friends/coworkers. As you all know AddiFest 2 was hosted a few weeks ago. Although the weather did not cooperate, the event was still a big success and we appreciate everyone that made it out and showed their support. The group that put this event together spent countless hours planning all the details and going out and getting sponsors. I want to say a Huge Thank You to Kassi, Kathy, James, Krystal, Vanessa, and Jennifer! We truly appreciate all that you guys have done! We also appreciate all the donations/sponsors for the silent auction and we appreciate all the bands that played at the event. Lastly I want to thank the spouses of the organizers who were also out in full force the day of the event. Thanks again to everyone involved! So what about little miss Addi?!? Well, she’s doing unbelievable and we are sooo proud of her! It’s been so long since my last post, I’m not sure where to even start. I have written some long posts in the past but if I cover every single detail of this past month I may set a new record. For those of you that don’t have time to read the book I’m about to write, I will give you a cliffs notes version. The last month or so has involved great things for Addi including lowered vent settings, great trials off the vent, weight gain, awesome time at school/therapy, many more outings and activity, as well as more mobility. The last month or so has also included some not so fun stuff like many more emergency trach changes, a 911 call, and an upcoming surgery. With all that said, the final statement of the cliff notes is Addi is doing unbelievable and has made big strides. Now let’s talk details. I think I’m going to try bullet points since there are so many things to talk about. These may turn in to short stories, but we’ll see. • Addi is now up to about 17 and a half pounds. She continues to gain good weight even with some recent phases of throwing up. • Addi’s vent settings have continued to improve with the biggest change being her breath rate. The ventilator breath rate is now down to 5. That’s right, the vent is only giving Addi 5 breaths per minute, the rest is all her! (Keep in mind, the vent still does keep her pressures up which basically means keeping her lungs inflated (from how I understand it) even though it’s not really “breathing” for her as it used to. • Addi started doing some real small vent trials a few weeks ago and has been a little rock star. These trials are actual vent trials where we shut off the vent completely (rather than just zero breath rate trials). Addi is already quickly up to 20 minutes at a time completely off the vent. Let me reiterate that, we are turning her vent off for 20 minutes at a time! And we are doing it sometimes multiple times a day. And she isn’t missing a beat. And we could go longer but we are not getting greedy. We will continue to up the time by 5 minutes at a time every few days or so. Do you know how exciting this is??? We could not be more proud of Addi with these vent trials. She is getting stronger and stronger and before we know it (hopefully next spring) Addi may be able to say good bye ventilator. That day may be even more exciting than the day she actually gets decanulated. We are all so ready to be done with this vent and give Addi more freedom. • Addi is doing awesome at school and therapy. As I noted in a previous post, Addi is now going to the Leann Britain center twice a week and she absolutely Loves it. Plus she’s doing great with it. That place is amazing. The way it’s organized, the incredible staff, and what they are doing for kids. So on Wednesday’s Addi goes to school for a few hours. They start by going to music class (which is in this really cool music room), then they go to her class room for art and free time, then they eat (this includes Addi. She is doing more and more taste therapy as well as actually taking very very small amounts of food by mouth), and sometime during all this they go to the playground. It’s such a cool playground. It’s like an outdoors playground that was brought inside. They have swings, slides, a big sandbox, cars/bicycle type toys to ride on, and this big tree playhouse. Addi absolutely Loves going down the slide. She smiles and laughs the whole time. Also right next to the playground is the swimming pool. Yep, they have an indoor swimming pool that is perfect for these special needs kiddos. Even with the vent, Addi has gotten to go swimming twice. We just set the vent on the side of the pool, cover it up with towels, and keep her tubing out of the water. Addi loves her time in the pool! Then on Thursday’s Addi has her one on one therapy time working with PT, OT, and Speech therapists. Again, this place is so awesome and they do incredible work with kids like Addi. • Not only is Addi going to school and therapy twice a week we are also getting her out more and more. We have been to Deanna Rose Children’s Farmstead a couple times to see the animals. We’ve been on a lot more walks. Heck we even took her to Target a couple weeks ago to pick up a few things and get out of the house. • Addi is more mobile than ever. She is crawling really really well now. She pulls herself up (with help from a chair or her crib), and she gets up on all fours. She hasn’t quite figured out how to stand completely up by herself, but that will happen before we know it. She stands for really long periods of time with the help of a toy or a chair or her crib. She absolutely loves standing up like a big girl! Before we know it (my prediction is around the first of the year) Addi will be walking! More big strides! No pun intended. • So with all these positive things going on, there have been a few not some perfect things. One of those things is more and more trach changes and many have been emergent. The main reason for this is Addi has been getting plugs quite often, specifically on Wednesdays and Thursdays. On those days when Addi is at school she is on the travel vent. The only difference between her home vent and the travel vent is the travel vent does not have a humidifier. Without the humidifier keeping her air moist, Addi has been getting a lot more plugs (dried up secretions that block her trach/airway). Sometimes those plugs have come on fast and really dropped Addi’s stats in a hurry. With that comes emergency trach change to get Addi a new airway. One of our visits to Deanne Rose included an emergency trach change. Addi developed a plug that was so thick we couldn’t suction her to the right depth. The plug had blocked the end of her trach so we had to get a new trach in right away. We went to a near by picnic table, layed Addi down, and did a quick trach change. Luckily this is all she needed and was fine after the change, but it was still kind of weird doing a trach change on a hard picnic table and at a kid’s farmstead. Most of the other emergency trach changes have been at night on Wednesday and Thursdays. Luckily we have gotten pretty good at the whole trach change thing. • One of those emergency trach changes did end up with a call to 911. One night a couple weeks ago Danielle was alone with Addi because Conner and I had ran to the store and then was going to go to Sabrina’s powder puff football game. While we were gone Addi pulled out her trach and literally handed it to Danielle. Danielle grabbed the trach, tried to put it back in, but it would not go. She grabbed the backup trach that is one step smaller, and tried to put it in. Still no luck. The trach would just not go in, even the smaller one. So she quickly called 911. It sounds like she kept calm and while the ambulance was in route, Danielle was able to finally get the smaller trach in. By the time 911 had arrived (which is actually super quick since they are only about a mile from our house), Danielle had everything under control. I arrived home after finding out EMS was there and then we tried to put her normal size trach back in. It would not go so I had to put the smaller one back in. We then tried one more time and luckily we got it in this time. Pretty intense night. • So you may be wondering why we had trouble getting the trachs in. Well we have noticed that Addi has some extra skin, granulation that has built up in her trachea. She went in for an ENT consult and they found that there is not only granulation at the entrance to the stoma (trach hole); there is also a lot of scar tissue down inside her trachea. This scar tissue is what is blocking us when we are trying to get a trach inserted. So it’s time for another surgery. This Wednesday Addi is going in for surgery. They are going to go in a clean out the scar tissue and may even open up or expand Addi’s airway a little bit. • So as we were getting close to surgery, of course, Addi gets sick. Mid last week Addi started really throwing up a lot (almost every feed) as well as started running a temp. Addi had a Preadmission testing appointment on Thursday and they found that along with her temp, Addi’s white blood count was really low. So that afternoon she got admitted to the PICU at CMH and they began an IV and started some antibiotics. By Friday night Addi was already feeling better. Unfortunately they want to keep Addi at the hospital until the surgery is done so that is where we are at now. They are just concerned that if the trach comes out we won’t be able to get it back in and then we’re in real trouble. So Addi will be here till at least Wednesday (surgery day) and we’re assuming Thursday. We think they will probably keep her one day post surgery for observation and pain management before sending her home. So this is the latest news. Like I said, we are so proud of Addi and all the progress she has made. She is such a fighter and continues to amaze us every day. Speaking of fighters, one other premature fighter that we know and love is now dancing in heaven. Mighty Max Ratliff passed away a couple weeks ago. Our thoughts and prayers are with the Ratliff’s as they deal with this situation that no parent should ever endure. Max we know you are in a better place now but we sure miss seeing that contagious smile. We love you buddy! Everyone needs to go hug their kids, give them a kiss, and tell them you love them! Nothing is guaranteed and life is short. Make the most of it and appreciate what you have for tomorrow it could be gone. Please continue to pray for great progress for Addi and pray that surgery goes perfectly as planned on Wednesday. Thanks again for all the support to each and every one of you.
Posted on: Tue, 29 Oct 2013 04:23:31 +0000
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