1.7.22 Trach Floor 72

Ed’s Post

About the same day for Aimee today as yesterday. Still needing oxygen and additional respiratory therapy. We did meet briefly with Pulmonary and have added in another steroid inhaler that we would typically use at home when she’s sick. Hoping to help her get past this cold so that we can get the central line scheduled first of next week. 

The longer we are here, the harder it is to remember what normal life looks like. Are we really going to get back home? The kids just assume that only one of us will be home at a time. I’m not sure they even remember who I am at work. They hired a temp guy to fill in for me while I was gone and he’s almost done, because he can’t work longer than six months! 

We have had discussions about what’s left before we go home, but it just doesn’t even seem real. It’s hard to even remember what Aimee’s room looks like with her in it. I was home last week and went to get water. It tasted funny, cause it wasn’t the hospital water. We bought a water filter three months ago to have at the hospital, because the water tasted so gross. Now home water taste weird. Rosa’s phone thinks she lives at the hospital and works at our house 😳. We’ve been here so long that we’ve built relationships in the hospital with many different staff members. One of the nurses got engaged during Christmas and was excited to tell us her story. We need to get home so that we can knit our family back together.

1.6.22 Trach Floor 71

Ed’s post 

We did it!! We have successfully completed our Trach training. Today my mom, Annette, and my niece, Angelique, did the last required Trach change. They did great, by the way. Aimee was coughing a lot of secretions up and it was not an easy change, but they did it! I want to take a moment and thank both of them for taking the time to learn this part of Aimee’s care. They both had to restructure their work schedule to get all 12 classes in before we were ready to go home. Also, I would like to thank all of you who helped watch the other four kids so that Rosa and I could both be at the trainings too.

The last part of our training was to go portable. Since Aimee has a cold, we couldn’t leave the room, but we did hook her up to the portable vent on the back of her wheelchair and switch everything over to her mobile equipment. I think we still have some tweaking to do, but overall felt pretty good about it. When we first heard about how long this class was, I thought there was no way it would take this long, but there are just a lot of steps along the way to care for Aimee now that she’s Trach and vent dependent. 

1.5.22 Trach Floor 70

Ed’s post

So just to keep everyone guessing around here, Aimee woke up with a bit of a fever this morning. For those of you following along, yes, you did read that correctly. Last night she was too cold and now she is too hot 💁‍♂️. We were able to get her back down to her base line temperature by some environmental changes. Although, she has needed some oxygen throughout the day to go along with additional respiratory therapies. 

The team did agree to draw blood cultures to rule out a blood infection. We don’t expect this to come back positive, but want to make sure we are not missing anything. Last night’s viral swab did show positive for the rhinovirus, so this could all be from that. Hard to imagine this is all from a common cold. If it is, and I suspect it is, it seems ANY added stress to Aimee’s body is a lot for her to handle now. 

I have to admit it makes me a little nervous to take her home. My mind is a bit of a blur with hand sanitizer, gloves, masks, and disinfectant wipes. We have not had our training for the TPN and Central line yet, but I imagine they will have cleaning requirements for us as accessing her line in a sterile way is very important here. At the hospital we have to wipe Aimee down with CHG wipes and change her bedding daily. My prayer is simple, Lord help us keep Aimee safe and healthy. 

Met with the Palliative team today and officially changed Aimee’s code status here at the hospital to no chest percussions if not responsive. Rosa and I both agree that this is right for Aimee. The Palliative doctors were complimentary of our thought process, of really keeping Aimee at the forefront of our decisions. Last night’s nurse overheard some the conversation between Rosa and I about whether to continue forward with the procedure that was scheduled for this morning. A little after midnight, I finished telling the doctor that we did not want to put Aimee through the procedure. After the doctor left the room, the nurse commented to me that we are doing a great job of making decisions for Aimee. It just strikes me that she would go out of her way to say that. She is not a nurse that we have had often and really our decision was to play it safe. It is very reassuring to have these comments of encouragement. 

PS from Rosa,

I am at home with the other kids this week and wanted to share something fun. The kids have been awarding me with “homemade stars” for each food that I actually make when I’m home. So, if you don’t feel appreciated in your cooking, try my proven method. Barely cook anything for your family for months. They will then be so grateful for anything homemade that they will praise you and reward you with imaginary stars! 🤣

1.4.22 Trach Floor 69

Ed’s post

Today has been filled with lots of visitors. We met with the Physical Therapist and the wheelchair company representative, because Aimee isn’t fitting into her chair super well. Turns out we need all parts, including a new back and seat mold as she has out grown her current ones. Her weight has increased about 35% in the last three months. Also a couple of others things like a new head rest and IV pole attachment. 

Occupational Therapy came by with Aimee’s new splints for her wrist that she was measured for a couple months ago. 

Tonight has been a bit of a whirlwind. Aimee has been pretty lethargic today and her temperature dropped to 94.4 also with increased secretions. Her bloodwork yesterday showed increased inflammation. Thanks to Caleb’s Christmas Eve present to Aimee, a heated blanket, we where able to warm her back up. In the mean time we have done a urine culture, chest X-ray, and a viral swab. So far nothing has come back positive, but she is definitely showing signs of stress somewhere in her body. We have chosen to postpone tomorrow’s central line procedure and let her recover.

1.3.22 Trach Floor 68

Ed’s Blog Post

This has been, by far, our longest inpatient stay and subsequently so it will be the most complex discharge we have ever had. Although we do not officially have a discharge date, we are close. Spent time today working with the care coordinator writing the preliminary orders for the different home care companies. This includes everything from diapers, Ostomy supplies, syringes, all the way down to the tape that we use to hold the NG tube in place on her nose. Don’t worry. Rosa will be helping me go over this list so that we don’t forget anything 😉. 

Beyond just the supplies and equipment, we have one more training left for the Trach, which is scheduled for Thursday. We have been scheduled for the central line placement on Wednesday. Once this new line is placed, we will receive two inpatient trainings and one additional training at home. There will also be a delivery to the house with all of our new home equipment to coordinate as well. Another parameter is that they will only discharge us on a Tuesday, Wednesday or Thursday. 

This all seems like a lot, but the excitement of wrapping this up and going home is AWESOME! To put things in perspective, the hospital will be contacting the EMS in our area to tell them that if a 911 call is received they HAVE to dispatch a paramedic not just an EMT. The power company is NOT allowed to turn off our power, even if we are behind on payment. We will be put on a priority list when power is being restored after an outage. We were even offered a ride home in an ambulance on the day off discharge! This all seems so crazy, but the reality is we are taking home a very complex and fragile girl. We can do this!

Aimee continues to recover from her cold, which is awesome. She woke up this morning with a smile on her face and was interactive with the nurses throughout the day. I am thankful and amazed at how much of an impact Aimee has had on people throughout her life without speaking a word. Some of you have never met Aimee and I wish you could. She is awesome. She is not pretentious. Her smile is so genuine. Her laugh is so contagious that it will make you cry. Though probably not as much as when she cries, that is heart breaking. Aimee has changed my life forever, without saying a word.

1.2.22 Trach Floor 67

Ed’s post

3 months ago, seems like an eternity. We hesitantly brought Aimee into the Emergency Department not knowing exactly what to expect. In three months we have made many changes and we have new goals for Aimee. I’m not quite sure what has been the biggest change but we are getting a good look at what the advantages the Trach brings. Aimee is fighting this cold and doing so well.

Part of the reason we said yes to the Trach was watching how effective the care was. We are able to suction so much deeper, safely and consistently. The cough assist works so well. The fact that we are not dependent on basically one nostril to do the deep suctioning and the bipap is amazing. It’s nice when you can see so clearly that we made the right decision moving on the Trach. We try so hard to make the most informed and best decisions for Aimee.

1.1.22 Trach Floor 66

Tomorrow is 3 months here straight. When we left home to bring Aimee to the Emergency Dept, we told the kids that we hoped to bring her back home in a couple days. This feels out of control. We can hold on for a time, but everything is a mess after this long. All the normal little things that make up regular life: well child checks and dentist appointments, children’s clothes, house cleaning, animal shelter cleaning, end of the fall garden care, body condition, healthy habits, marriage connection, financial record keeping, piles of mail… it is just too long and it is all out of control. I am scared as we finally come to an end. What will we have to face when we bring Aimee home? We have to figure out how to take care of Aimee in new ways and also all the rest. I feel low and blue and depressed. I know that we are doing what is right and good. Yet also, this journey is such a very heavy weight, such a survivor road. We must go on. Praying that when we get there, through this part of our journey, that there will be solid relationship left between Ed and I, also between us and our children. 

Aimee has a cold. We are doing extra treatments and care. It is so amazing to have these great tools with the trach, the vent, the amazing cough assist. Hoping to help her quickly through this.