Home Sweet Hospital

It’s been a while since our last update and we thought it was time to share our status.

We have been in the hospital for 7 weeks now as of today. This is by-far Kate’s longest hospitalization yet. That said, things are going reasonably, all things considered. Kate is still growing, learning and developing like a normal toddler. She’s getting very close to walking on her own. She’s still not talking but is using more and more signs to share her wants and needs. Kate is getting lots of developmental assistance while in the hospital. Each week she is visited by speech therapy, occupational therapy, music therapy and physical therapy, all coming by at least a couple times per week.

In a lot of respects, the hospital is closer to home than home is right now. The hospital is the only place all three of us can be together. We spend way more time there than at home too. Kate has a pretty fun setup with lots of toys and things to work on too!

There is still a lot of headaches with the hospital. This week we found out that Kate’s speech therapist is being moved to St Paul. Kate had developed a fantastic relationship with this person, getting to the point where Kate would come up and sit in her lap to read! This was huge for Kate. We’ve seen our non-verbal Kate communicating much more using signs too. Unfortunately it will probably be another month or so at the soonest before Kate can get close to another therapist, assuming they are a good fit for her.

We’re also dealing with the continued frustration of nurses completely ignoring requests, desires and in some instances, ignoring orders with respect to Kate’s care. We’re working through these but they are a repeated issue and seem to be a culture problem with our unit. We have a continuous revolving door of nurses rather than a few core nurses that are assigned to Kate. There are some that are great and repeat but more often than not, we are getting new faces that we have to train all over again on what Kate needs and it’s tiring and frustrating.

On positive notes, Dave’s brother Tom made a great set of handlebars for Kate to let her push her IV pole on her own! She’s still warming up to them but often will have lots of fun practically running down the hallway.

Kate’s really growing and developing too! We have been able to keep her on a steady growth curve and are seeing more and more development all the time. Kate is getting more and more independent every day and it’s fun to see. She is good at taking people’s temperature using the room’s forehead thermometer. She knows where the stethoscope goes on her and frequently wants to listen to herself and others.

A huge thank-you goes out to everyone who has reached out with food or food delivery gifts through our meal train calendar. We really appreciate it. There’s no end in sight to our stay here at the hospital. For anyone with smaller kids, if you are open to it, we are adding some virtual play-dates to the meal-train calendar. It would be fun to let Kate see and interact with some other kids…all the interaction she gets at the hospital is with adults other than her virtual ECFE class once a week.

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