Jessica's Pulse

I (Jason) got up early today (4am) to return to work in Columbia, SC while Jessica stays in the CSU at CHOA/Egleston for continued monitoring regarding her fluid buildup around the lungs. We are also concerned about some continue rashes/hives that have been seen on Jessica since last Saturday. The rashes aren’t severe, but certainly annoying (itchy) for Jessica. They do disappear/subside soon after treatment (allergy medication). We will follow up with the pediatrician or dermatologist once released if we don’t find an immediate solution while still in the hospital. They are thinking Jessica may be released later today provided today’s test results look good (medication is doing a good job of controlling excessive fluids).

We have been in the CSU at CHOA/Egleston waiting to see if the resumed and new medications will be adequate to drain fluid around Jessica’s lungs or if we will need to have a drainage tube put in. We are hoping the medications will be enough. They will keep Jessica here in the CSU until we have a better direction. She will have daily X-Rays and other tests to see how well the medications are doing and if any change in treatment is needed.

As we stated before, we needed to return to CHOA for Jessica to have some excess fluid drained from her lungs in order to prevent serious problems in the future. We got into the Atlanta area around 8pm yesterday and arrived at the ER at CHOA/Egleston around 9:30pm. After some initial diagnostics and evaluation, Jessica was (re)admitted in to the Cardiac Stepdown Unit (CSU) to wait for additional tests and potential procedures later this morning. We won’t know how long Jessica will be here until those tests are completed and treatment options are recommended. It might be possible to adjust some medications and follow up in a week or so. The other possibility still remains the drainage tube and several days stay in the CSU. We’ll keep everyone posted as we get more information.

Jessica normally sees a pediatric cardiologist in the Charlotte area (we used to live in Charlotte) and we went back for her first post operation (Fontan) followup with them. Jessica is doing fine in all areas except for one problem. Her X-ray shows an area of her right lungs that have a moderate amound of fluid. If there was only a small amount — it won’t be a big deal — just increase some medications to control the excess fuild build-up. However, the amount of fluid is enough to warrant draining with a tube — which requires being in the hospital for several days. We decided to have this done back at Children’s Healthcare of Atlanta since we have family in the Atlanta area, Jessica just had her last surgery there and this would be considered a complication or side-effect of that surgery, and they are the best in the southeast for pediactric cardiology. Overall, this isn’t a huge setback for Jessica — she is otherwise recovering very well and even surprising us in how quickly she is bouncing back.

Jessica had her first post-operation appoinment since the discharge from the hospital. According to Ledy, Jessica is doing fine. In fact, we are able to drop two medications off the list — with careful watching for any adverse effects. The meds were mainly for controlling excess fluid build-up in the body so we need to watch for that — we may need to return to the meds if we notice any signs of fluid retention. In all, her progress continues to be amazing (Ledy told me Jessica actually ran around a little right before her appointment today). I had to return to work today and Jessica did call me on the cell phone just to say she misses me.

Jessica was discharged from the hospital yesterday (Sunday) around 2pm. Initially we were concerned this might be too early, but after seeing how quickly Jessica has been recovering makes me feel a lot better. She has been able to walk further distances and even climb up and down a few stairs (with some assistance). We got some bubbles for her to play with — which provides additional theorpy by expanding her lungs with deeper breaths (in order to blow bubbles).

The medicine management has been a real trial. We have employed a spreadsheet to help keep track of all the meds, doses, and the times given. We are hoping she can stop taking some of these meds soon. We will find out how well she continues to recover in her follow-up appointment back at CHOA/Egleston tomorrow.

Today at the hospital we were able to do more walking around and even got in the stroller to visit the garden outside. All the X-Rays came back good. Jessica is also off the supplied oxygen. The big news is Jessica was discharged from CHOA/Egleston around 2pm today. She does have a follow-up appointment early next week to make sure Jessica is still doing fine. Jessica’s grandmother that lives in Newnan, Ga will have Jessica and the family stay there next week so she can make her follow up appointment and be close to CHOA if there is an emergency for some reason.

Anyway, we are very excited to have Jessica out of the hospital.

Again, Jessica continues to amaze us with her progress. We were able to stand her up for the first time today in the morning before her X-Ray. On the way to the X-Ray she was able to ride mosly upright in a wagon.  There was very little drainage from her chest and the X-Ray was fairly good so her chest tubes were removed. Of course, this initially upset Jessica because this is not a fun activity – at least she was well medicated for the procedure. After she recovered from all that, she was able to actually walk around a small amount (from the wagon to a chair). By the evening, we were able to take Jessica to a playroom for a little while. Although there were times when she had a difficult time, she did remarkably well. There were many times I felt the return of the typical Jessica. I’m hoping we can take her to the garden (outside) and possibly walk around the hallways of the CSU. All of these are big steps for Jessica and we hope will shorten her stay in the hospital.

At this point, next big milestone is getting off supplied oxygen.

Jessica continues to improve. In general she has been in better spirits, able to have conversations with various people and even getting in a smile or two. In order to get a chest X-ray, Jessica had to sit upright while in a wheelchair. Sitting upright helps clear any excess fluids. Our next step is to get her standing up entirely — perhaps even walking around. That would be a good step forward in getting her chest tube removed. We are also gradually reducing her reliance on supplied oxygen. Both are good steps in getting released. We spoke with the surgeon today and he commented if Jessica can have her chest tubes removed tomorrow and off supplied oxygen, then she might be released Sunday or Monday. Of course, that is a best case senario and a lot will depend on how much drainage is still left in her chest from the surgery. Either way, I find it completely shocking that a child could be ready to go home in less than a week after major open-heart surgery.

Also, Jessica is currently off the morphine. We had one IV removed last night because it was bothering Jessica and we still had a good working one in the other hand. However, this morning Jessica’s other IV wasn’t working right and causing a bit of pain for her. We decided to switch to oral pain relief, which acts a little slower, but is otherwise the same strength as the IV version. The only exception is the morphine is only given via IV and is not an option unless oral meds are not able to contain her pain. We have managed to make it through most of the day without the need for more powerful (morphine) pain relievers.

In general, things are going well, and we may be home sooner than expected if things continue to improve at this rate.

This morning Jessica was moved out of CICU to a private room in a section of Egleston called the Cardiac Step-down Unit (CSU). The was moved around 9:30 am, which was a bit earlier than expected. We are hoping she does well in CSU, although we are in no hurry to leave the hospital. We see this move as a very good step forward. Jessica’s condition continues to improve and she is in a relatively good mood considering her situation. For those interested, she is in room 2146 at CHOA/Egleston.