Home on IVs

Right before we were discharged from the hospital. Notice our smiles! That is Madeline's version of a smile. :)

Going home from Hopkins yesterday was so amazing. We all felt a huge sense of relief bringing Madeline back to the place that she feels the most comfortable. My parents were able to join us at home to help with extra tasks while we try to take care of Madeline's IV and medicines. It's great to have some extra hands to help us around the house. Unpacking and getting Madeline settled last night seemed like an overwhelming chore but we did it with our great help....and we are so thankful. Most of the ride home Madeline was in and out of sleep mumbling "Go do princess puzzle." She clearly had already decided what toy she wanted to play with once she walked into the door. It felt great to drive away from all we had been through yesterday. I just cannot explain the relief we all feel....As  great as the nurses were(and that we were in one of the best hospitals in the country for CF care)....it eases all of our nerves to know that we have her home.

May, one of the sweet nurses that took care of Madeline on discharge day.

A few hours after arriving we met with a "home health care nurse". She came to the house and went over all of Madeline's IV medications, how to give them, and how to take care of Madeline's PICC line. This was the last meeting we will have with any home health nurses. So it was important we understood all the directions since we will be doing it on our own. We had a lot of training at the hospital for most of this so we felt fairly confident. Jack and I also did a few IV's medications on our own before we left with some of the nurses so we could get the hang of it before being home without the luxury of a medical team.

Instead of coming home with a full IV tower (tree) to hold the medication and IV pumps. We get to use these IV balls. The medicine is stored inside the bulb. Once it is hooked up to her line it infuses on its own. No timers, gauges, etc.

Madeline is getting IV's 3 times a day. She is getting Tobramycin (to kill Pseudo) and Ceftazdine as a back up antibiotic to protect against other bacteria that she may have encountered in the hospital or around. The bulbs take longer to infuse that the hospital IV pumps. She gets IVs every  8 hours. She get a IV at 6 am (takes 15 minutes), one at 2pm (15minutes), and then 2 at 10pm (takes over an hour for two medicines).

There is a clear process for administering the IVs with the PICC. We seem to feel pretty good about it. It goes like this for just one antibiotic IV infusion...

1. Wash hands, put on gloves
2., Wipe iv line cap (opening on her picc) with alcohol wipe (needs to stay sterile to prevent infection in her picc)
3. Hook up saline syringe, unclamp picc line
4. Push in 5cc of saline, clamp the line, remove syringe
3. Wipe iv line cap with alcohol wipe
4. Hook up antibiotic bulb (pic above), unclamp line,  and let bulb deflate (medicine infuse for 15-45 minutes)
5.Clamp line, remove deflated bulb, wipe iv line cap with alcohol wipe
6.Hook up Heparin (keep line from clotting between infusions) syringe, unclamp line
7. Push in 2cc of Heparin, clamp line
8. Remove syringe

You can watch a demonstratinon that is similiar to our routine below. Although this video doesn't have all the steps done accurately, it gives you a sense of what we are doing. This child also has CF. (notice she does her vest while doing IVs. We are doing 4 neb/vest treatments a day in addition to IV therapy)

And that completes one IV therapy of medication to treat Pseudo. We have found the best way to do this is with two people handing one person supplies while the other is actually doing it. It also helps when Madeline is asleep since she is very fearful that the syringes are actually needles and still freaks when she sees us messing with her line.

The process isn't really quick and it is involved but we feel good about it. I would just about do anything at home for her medically rather than stay in the hospital. Our biggest fear is making sure the line doesn't fail. Otherwise, we will have to return to Hopkins and she will have to back to the OR to have another put in.
So we are trying to do our best to check the dressing, keep her from bumping it, and overall just doing our best to prevent any possible probems with it that we can. Of course, sometimes we cannot always control what the PICC does. I have my fingers crossed that this line will last well for the next week....


Supplies for IV meds (syringes to flush line and alcohol wipes)

Overall, Madeline is adjusting really well to being home. Thanks for all your care packages and toys. We have been able to give her some each day. She loves each and every one of them. It's so great to see her happy and see her acting more like herself at home.

breakfast

More updates as we get "good" at doing IV therapy at home!!! :) Thanks for all your comments and thoughts!