10.31.21 Trach Floor 5

Guest blogger #4

Well Happy Halloween! Today has been a pretty peaceful and quiet day. Aimee got up in her wheelchair for about half an hour today and did really well. Granted, she slept most of that time. No other big news to report. Still waiting until tomorrow to hear what GI has planned. We did sign the paperwork for tomorrow’s trach safe procedure, which is scheduled for 9:30. Otolaryngology’s surgeon, who did her tracheotomy surgery, will be checking the placement and how Aimee’s body is responding to the trach. They also use the opportunity to create safety plans specific to Aimee’s airway/trach for emergency use. 

Rosa and I had a chance to talk to the team attending together, which was nice. He is one of those doctors that doesn’t belittle your situation. It was very evident that he has lots of experience and has been working in the MCC department for a while as its director, but at the same time still has empathy for what we are going through. This is so refreshing. Sometimes doctors tend to tell us that they’ve seen worse situations, which can makes you feel insignificant. I think they try this method in an attempt to make us feel like they are competent and can handle our situation, but it really makes us feel as if we don’t belong here because we’re not serious enough or that our feelings are not valid because they have seen worse. So nice to actually be heard. 

It wasn’t until after our first spine surgery four years ago with Aimee’s growth rods that we were connected with the MCC team. Since then we have been followed by their team every time we are inpatient. The consistency of their care has made these times a lot less frustrating, because you don’t have to build the trust every single time you come in. They are advocates for us and for Aimee. They have been through lots of gut function issues with us and are able to help each new team learn Aimee quicker. I didn’t even know this type of care was some thing that Children’s Hospital provided, but I am so thankful that we were considered for this team and have now had their support throughout the years.

Please be praying for both Rosa and I as we step into this next two month season. During the month of November and December we have to complete 14 training sessions in order to be cleared by the hospital to care for Aimee at home. Each week we have two training sessions at the hospital where we both have to be here at the same time. This will mean that whoever is at home with the other four kids has to make two additional trips to Seattle each week. This will make the home side of this process much more complicated and wearisome. We are both already so depleted. I’m not quite sure how this will all work out. 

If my math is correct, we have now been inpatient over 90 days since May. This has been extremely exhausting both emotionally and physically. In the past during our hospital stays, we have had the hope that we could return home soon. This time, with the trainings set, the realization that we will be here for the next two months at minimum has really started to settle in. You can do just about anything for two weeks knowing it will end, but two months is a lot longer stretch. 

Thank you for those that have continued with your prayer and support. We have felt your presence with us during this time. Please continue, as we will need it now more than ever.