Here it is, folks: the Q & A!
Are you going back to work or are you going to stay home with Abby?
This is a tricky question. Abby requires 24 hour care and it doesn't look like we'll be getting 24 hour nursing assistance. Therefore, we're going to have to work something out that allows me to take care of Abby. Right now, I'm just working when I feel like I can (depending on our training schedule at the hospital, meetings, and how Abby is doing) and taking it day-by-day. My principal has been nothing but supportive and is just going with the flow. I have also truly appreciated the assistance the board of education has given to me, because they have really been working with me to figure this out! I have a fabulous long-term sub who is doing a great job with very little help from me! So far, I have worked one day and will hopefully be working the two days before winter break. After that, it's still up in the air!
Because of Abby's rib abnormality, do you have to carry Abby a special way or be extra careful holding her so as not to injure her internal organs?
No. Right now, we can hold and care for Abby just like a typical baby. The fibrous tissue that is holding her rib gaps together is strong enough to withstand the little bit she moves around. There was a time when we were concerned about her hips and were very careful when changing her diaper, but that isn't a concern anymore. Down the road as Abby becomes more active, there may be limitations on what she can do because of her ribs. We'll learn more about them from the spinal and thoracic specialists we meet.
What kind of clothes can Abby wear?
Because of the trach, vent, and various wires, snap-up sleepers work best. The wires can go in between the snaps easily rather than having to come up through the neck. I'm sure we'll get to a point where she can wear anything and we just adapt it, but right now I'm a big fan of the snap sleepers!
How is Caleb handling all of this?
Caleb is doing as well as can be expected. He misses normalcy just like the rest of us, and sometimes his frustration is shown through his behavior. We are all just trying to be patient with him and help him use words to share how he is feeling. His medical playtime at the hospital has helped some, and he will have another session next week. This one will be without us, so I am interested to see how he opens up to Megan when we aren't around. We did have a conversation the other day where he mentioned that Abby wouldn't have any tubes when she came home. As much as I tried to explain that what Abby has now is what she'll be coming home with, I'm not sure he really gets or accepts that.
We're really just working on being able to spend quality time with Caleb while he's here (visiting the zoo or Science Center, doing the activity hour here, snuggling, reading books, etc.) and brainstorming ways he can be involved in Abby's care at home. I'm trying to teach him the medical terms for some of the supplies she needs so that he can grab me things as I need them. Maybe he'll grow up to be a doctor!! :)
Will you have help when you go home?
We need all of the help we can get!!!! :) Yes, we will have nursing care. We're not sure of the amount of hours we'll receive and probably won't know until a few days before discharge (why, yes, that does drive the planner in me absolutely crazy!!) I do know that we'll start out with 24 hour nursing care and then that will be tapered pretty quickly. I'm hoping that we stick with at least 16 hours of long-term nursing care! We will also have a respiratory therapist assigned to us who will come by about once a week to check the vent and assist in anything as necessary.
Will you be able to travel with Abby?
Well...not anytime soon!! That is more of a comfort thing for us than a medical reason--although it's not a good idea to be out in public too much with a medically fragile child during flu season anyway. But with all of the "stuff" we have to bring with us for Abby, it's going to take us a while to work up the nerve to venture out of our house. I'm thinking we'll start small...maybe just a ride down the driveway! :)
Here's a list of what we'll take with us whenever we go anywhere: the vent, a suction machine, a to-go bag that has all of our supplies in it (suction catheters, extra trach, gauze, sterile water, saline, etc.), a feeding pump, her heart/lung monitor, pulse-ox machine, an oxygen tank, the water heater for the humidifier, a regular diaper bag...oh yeah, and Abby!
I think that's it. There may be more that I don't realize yet. I'm hoping that her heart/lung monitor will have a place for the pulse-ox on it so that we can lose one machine, but it doesn't appear to be that way.
If it's a short trip of less than three hours and we time it right, we can leave her feeding pump at home. Otherwise, it needs to go with us.
Are you starting to see why I'm panicing at the thought of taking her home??? Forgetting the suction catheters isn't like forgetting diapers and having to improvise or stop by Safeway. They don't sell suction catheters at grocery stores!!
I'm hoping that we get comfortable enough to take her out, but it's going to take a while. When we finally are ready, then I'll have to prepare myself for the stares. But that's a different worry.