I’m sorry for the delay in posting. We’ve been on another roller coaster ride the last month. Today is day 145. I can’t believe this is how our last almost 5 months have gone. You never could have prepared our family for this with an uneventful, healthy pregnancy. However, we know we have the strongest little girl who is so determined and tough. 

After everything Scotti girl has been through, I thought the trach was supposed to be the answer to our prayers, but boy, the first three weeks after getting the trach was really rough. It was very hard to see Scotti struggling with issues that she had previously overcome. 

After her PICC line went bad she struggled with withdrawl, which led to a lot of vomiting and agitation, which is understandable when dealing with withdrawl. The withdrawl symptoms gradually improved, but the vomiting continued. This was SO hard to see and manage as she never actually threw up prior to getting the tracheostomy. She got to the point where she was vomiting up every feed, and a majority of the breast milk she was being given through her g-button. Her urine output had decreased and she was getting somewhat dehydrated. All of this led to slowing her feed way down to the point to where she was on a continuous drip. This means she was being continuously fed every minute of the day via her g-button. At this point I am very grateful for the g-button, otherwise she would continue to have the NG down her nose and throat, which would lead to further reflux and vomiting issues. With the g-button she just eats a little differently than you and I, but that’s okay, because we have her growing at a nice pace now. 

This last month has been filled with lots of fine tooth combing many aspects of her care. I knew Scotti’s norm prior to the trach, but the trach really threw a wrench into things, to the point to where I didn’t even know what her normal was, and honestly, neither did she. She had a whole new way to learn to breathe. We started out on a new adventure with no road map and got detoured a few times. 

Prior to the trach, she was nursing and bottle feeding. The trach has changed this due to her secretions. She has thicker secretions now in her mouth, which she swallows, since babies cannot cough up mucus and spit it out like kids and adults can. Because of this, she is swallowing down the thick mucus, which then sits in her stomach, makes her nauseous, and then eventually she vomits it up. Because of the thick mucus, she has had more of an oral aversion, so she is not interested in her pacifier, bottle, or nursing. We have started introducing the bottle and breast again, but right now she is more gaggy due to the secretions. We are hoping that as she grows older, her secretions will thin down and she will be able to manage them better, and she will be able to tolerate oral feeding/eating better. 

Last Wednesday, she did have another scope, which did show subglottic stenosis again, but not as severe as it previously was. Our new ENT doctor had to divide and dilate her subglottis again, and said that he was very surprised to see how reactive her airway was. He said she started to swell almost instantly after doing the division and dilation. She did have some granulation tissue (where the trach opening is trying to heal itself) on the upper part of the inside of her trach stoma that he was going to try to get at, but he was not able to get back at that because her airway reacted so quickly above her trach. This is just another reason as to why she needed the trach to secure her airway. However, Dr. Sewell was able to give her a bigger size trach, which allows her to breathe so much easier and clear more of her secretions. I think this has made the biggest difference in her overall work and comfort of breathing. We also have started to do nebulizers three times a day to keep her secretions thin enough to suction out of her trach. 

I have all of my education and training completed in regards to how to care for her tracheostomy and g-button. Tyler came down this past week and completed his education as well, which he breezed through. I knew he would, he is such a wonderful dad and caregiver. My mom will come down this next week to do her training as our third caregiver. Gma Kathy and Gpa Larry learned quite a bit while they were here the last 5 weeks and now my sister, Paige is here learning. I will be in charge of teaching anyone who cares for her “everything” including emergency cares prior to anyone being able to watch her for us. Likely in the next week and a half or so I will come home and meet with our home advanced respiratory team and medical equipment staff to get her room all set up and learn about her home medical supplies. Obviously the equipment will be different than what we use in the hospital, so once Tyler and I receive that training at home, I will bring all the equipment down here to the hospital and then Tyler, my mom and I will have to do our “rooming in” with Scotti. The rooming in  process is to ensure that we feel comfortable caring for her 24 hours a day. We each do 1- 12 hour day shift and 1- 12 hour night shift to prove our competency. So long as things continue to go well, and her airway and breathing is stable, we will plan to discharge the first week of May.  

We ask for prayers to continue to heal Scotti and strengthen her body and to get her trach secretions and feeds figured out so she can come home without hopefully any complications and stay healthy. We thank God for all the healing He has done in her body and we thank each of you for all the prayers that you have sent up for Scotti and our family. It takes a village and we are so grateful for the village we have. We pray that our home care nursing all comes together and that we are blessed with wonderful nurses to help care for this special little girl. We pray for every day to get better for her and for her new way of living to be accepted by all. I know I have been guilty of looking at children, especially here at the children’s hospital and thinking I feel so sorry for that child and their family. Now that we are one of “those” families, we do not want any sympathy, but for everyone look at her as a true little miracle that fought so hard to be here with us. Hopefully the worst is behind us and Scotti won’t remember any part of this. Hopefully she’ll just grow stronger and later ask about her battle scars and then we’ll tell her about her journey and her strength and what an amazing God we serve that saved her life. Until then, we just have the cutest and sweetest little trach baby there ever was with hopes to get home safely soon. ♥️