We were finally given the ok yesterday to head home. We just had to meet with the Cardiologist (Dr. Edens), Home Health Care (Lori), go to Jordan's Endocrinology appointment with Dr Tansey, along with countless residents, nurses...it's exhausting just thinking about it all.
The day started of "normal" with the resident coming in asking how Jordan's night went. Jorgie Porgie actually slept most of the night except for waking her up to give her Motrin at 2AM. They didn't have labs drawn since now she's a bit anemic. They aren't concerned about Jordan being anemic since they've been drawing so much blood lately. Still something to keep an eye on so they have told us to start vitamins with her. Just another thing to take :-) BUT we were given the new that IF everything went well that day, we could go home that afternoon.
Things were really clicking along for the most part. We did notice Jordan's incision had opened up more. When Tina checked it out, she told us it was superficial (on the surface) so not to worry too much about it. We can't pack it since it isn't that deep and we can't put more glue on it. Since it isn't a sterile wound anymore, they would be just trapping germs and bacteria in the wound by using the glue.
We had an endo appointment that took almost 6 months to get originally so Dr. Edens told us we could take her down to the clinic for it instead of making us reschedule it. Thank goodness!! It was a bit awkward taking an IV pole attached to a little girl in brown boots and Tinkerbell Pjs but hey! It worked. The IV pump only went off a couple of times :-) As for the appointment itself, we are back to a wait and see holding pattern. Dr Tansey thinks Jordan's size issue is more of a weight issue. He showed us 3 growth charts-one for the height, one for the weight, and one for the combination of the 2. She's in the 8th percentile on her height (she's grown a lot in the last couple of months!) but off the curve for her weight and with taking inconsideration of both her height and weight, she is well off the curve. Right now he thinks it more nutritionally based so now need to pump more calories into the girl! Butter, peanut butter, breakfast shakes...anyway we can get more into her the better. He talked about Turner's syndrome but said it usually happens the opposite way (the kids grow until age 3 and then taper off). He wants to do a thyroid test again before really making any decisions. We will have it done the next time labs are drawn. He didn't want to put her through another finger poking and since she's already anemic, he just held off. We go back in July.
The Home Health Care nurse came to meet us at the hospital too! She gave us a crash course in what we will have to do for Jordan's IV treatments. They are REALLY simple!! Here I thought it was going to be a big IV pump that we've been dragging around with us for several days and it's just a little "grenade" or balls of fluid that is pressurized! No batteries, no pumps, no electricity...just saline and heparin syringes and the IV balls. Jordan even got a little backpack to be able to carry it around in so we can leave if needed. My fears relieved! Lori gave us some supplies to get started and set up a time next week to come and check things out.
SO by 5:00 we were finally on the road to home. Nothing felt so great! The sunset was amazing and I just felt peace. Until 45 minutes later...
We had to have Jordan's dressing changed before we left the hospital. While doing this, her site started bleeding. I could tell the nurses were surprised a bit but really didn't do much about it (at least it seemed to us). They just put some Tagaderm on it and sent us on our way. Well, 45 minutes after being home, we were checking her gauze padding that covers her incision, we found her arm to be pretty bloody under the Tagaderm! It was pooling so bad that it was traveling up the outside of the tubing from the PICC line and started to get on her PJ top. Needless to say FRUSTRATED by this because we knew this is cause for ANOTHER trip to the hospital. We called in to let them know we were coming but then called a friend who is a doc at the U too. She made some phone calls for us and got the PICC nurse, Barb, who put it in originally to stay and re-dress the line again. Barb I'm sure had a long day and was currently in the OR putting in another PICC line. We had to wait about an hour to have Barb change the dressing again. We are so grateful she was able and willing to do it!!
We've come across some really great people during this experience. While I feel some people think of this as just getting tonsils out and what's the big deal, others have really stepped up and helped us out! I know I've said thank you a lot of times but we really can't say it enough!
Hanging with my bros and Daddy! What is this tube for??
This time around Jordan had part of a coffee cup covering her IV to protect it. We put stickers on it to spice it up a little bit! She also had a board and a burn sleeve on it to help protect it even more.
Drunk Jordan Returns...She's coming out of sedation from her PICC line being placed.