Carter continues to be steadily improving and for that we are so grateful. Last week I had shared that we were seeing blood in several of Carter’s diapers. I forgot to share with you the test results and the cause of the bleeding. It turned out that Carter has C-Diff., which is a bacterial infection and not a virus. He is now being treated with an antibiotic three times daily to clear it up. Out of all the possible things that could’ve been causing the bleeding, C-Diff. is one of the less serious things, so this is good. We’re told that C-Diff. is commonly seen in post transplant patients, and isn’t a huge deal. Also, no more blood has been seen in Carter’s diapers recently, which is a relief.
Carter’s diagnosis of C-Diff. will not prevent him from being discharged this week. We’re glad that it won’t set him back at all. The plan is that Carter will be discharged on Tuesday, the same day Brenda (Jeremy’s mom) flies in to Durham to help us out. We will be moving into our apartment here in Durham that same day. Tuesday promises to be an exciting and busy day for us. We are really looking forward to having Carter out of the hospital. We’re told that Carter’s outpatient time should be about 2 weeks. During Carter’s outpatient time he will have regular visits at the day hospital. If all continues to go well and there are no complications, we could be back home by Christmas- just like I’ve been hoping!
These past couple of days Carter has been allowed to leave the PBMT unit and go out on “passes.” During these times Carter is unhooked from his IV lines so that we don’t have to take his pole along with us. (He still has to wear a mask though.) Yesterday Carter had a three hour pass and we took him for a walk in his stroller outside. We walked to a nearby Dunkin Donuts to get Jeremy some coffee. This was the first time Carter had been outside in about four weeks. He really seemed to enjoy just looking around at the cars, buildings and people. The fresh air really tired Carter out and by the time we got back from our walk he had fallen asleep in his stroller. We did get a couple of weird stares and hushed comments from people (mainly other children) because of Carter’s mask. I must admit this bothered me a bit, but I guess it’s just something I’m going to have to get used to dealing with.
Today Carter was allowed to go out on another three hour pass. Since it was raining outside, we decided to adventure around inside the hospital. You may wonder what in the world we did inside the hospital for such a long time. Let me assure you, we found many fun things to do. Carter’s absolute favorite thing to do was look at the “waterfall” in the lobby (it was really just a water fountain). He was absolutely enthralled with the waterfall, and got a big kick out of throwing money into it. (Don’t all boys love to throw things?) Another thing that Carter really enjoyed doing was climbing up and down the stairwell. (Who would’ve thought stairs could be so much fun?) We were glad that Carter liked the stairs so much, since the exercise was really good for him. My favorite time was when we went over to the children’s day hospital area, which was pretty much deserted on a Sunday. I went up to the third floor with Chloe, while Jeremy and Carter were down on the first floor. I threw Carter’s hat down to him off of the balcony- and Carter began laughing hysterically- he thought it was the best thing ever. Needless to say, Carter wanted me to throw more things down, which I continued to do, until Jeremy decided that was enough of my silliness.
We also ventured to the cafeteria, where Carter devoured an entire banana. This was the first piece of fruit that Carter has eaten since being admitted, due to his neutropenic dietary restrictions. A neutropenic diet means no fresh fruit or veggies. The reason for this restriction is due to the bacteria that may be on the skin of fresh produce. Today the doctor gave Carter permission to begin eating “thick skinned” fruit, such as oranges and bananas, since their skins can easily be peeled off. It was very satisfying to see Carter enjoy eating his banana so much.
In addition to taking Carter out on passes, Jeremy and I have been busy preparing for Carter’s discharge. There are a large number of medical things that Jeremy and I will be responsible for doing once Carter is out of the hospital. Some of these things we have done in the past, while other things are new to us. We will be responsible for Carter’s dressing changes (once weekly), cap changes (three times a week), and oral meds (daily.) These are all things that we have done with Carter before. We will also be responsible for running Carter’s TPN (Total Parenteral Nutrition) through an IV line using a special pump machine. This will be a new thing for us, and they have already trained Jeremy on how to use the pump. I will be trained within the next few days. Another new responsibility that we will have is doing Carter’s blood draws by ourselves. We will need to draw several vials of Carter’s blood each morning at the apartment, and then drop the blood off at the hospital to be tested. Some days Carter will need to go in to the day hospital to receive blood products when his counts are low.
Once Carter is discharged on Tuesday, we will no doubt be kept quite busy with all of the medical attention that he will still require. This is by far the greatest amount of medical responsibility that we have been given thus far. At times it seems a bit overwhelming, however, I know that Jeremy and I will do just great as we work together as a team!
Wanda
