From PICU to the PCU

Yesterday they moved us from the PICU to the PCU (Progressive Care Unit), which is a unit also closely monitored for respiratory and cardiac, but less critical. We are in PCU, Room 718. Braden was almost sent back to the PICU not long after arriving in our new digs, as he finally showed the doctors here how intense and labored his breathing is. However, food and swaddling settled him for awhile. We think his clock is a little off, as he partied with both mommy and daddy in the wee hours of the morning. Maybe it wasn’t so terrible, as the pull-out couch in the room is built for one person, but mommy and daddy snuggled up to share.

Today we had another EEG to see what his little seizures look like, as we have seen a spike in that activity since taking him off the ACTH and topimax, and putting him on Kepra. We will know something to share tomorrow. We also saw a pediatric opthamalogist, as we are a little concerned about his eyesight, and they examined him and dilated his pupils to see if our issues are neurological or anatomical.

His blood pressure is still elevated, but better than it was while on ACTH. They are going to do an echo (EKG) on his heart tomorrow to see if everything there still looks OK. They have also discussed sending in a renal specialist to figure out how to manage his kidney stones and calcium deposits. We will see…

They don’t think we would have to stay much past Sunday if we are only addressing the viral infection, but our status could change depending on what the neuro team wants to do to treat the seizures, that may delay us getting home, as there may be additional IV therapy they want to do. If that is the case, then we will probably get the pick line put in on Friday.

They have put him on some medications to help slow his secretions, and we will have to see how he does with that, before they start considering looking at a tracheostomy, if that is the best option for Braden. We want to give him a chance post-seizure activity to see how he would do in therapy, as pre-seizure activity, he was doing well enough that they were ready to do another swallow study to see if he would be ready for anything by mouth. He has gotten a little drooly since the onset of the seizures, so we are hoping to see some improvement, and time may tell how he does with therapy. Again, another wait and see. We are wanting to hold off and give him a chance, as this procedure would mean a whole additional set of issues to deal with, and considerations for care. More waiting…

Thanks to everyone who has sent Braden an e-card – we have them posted in his room. The picture is from our PICU room, which shows the neat designs they offer, and the backside contains your personalized messages for him. Braden has about 40 cards now, posted on the wall in our new room.

Mommy had an answered prayer when a massage therapist was waiting for a volunteer the other day as we were leaving the Ronald McDonald House. Her back was in a twist until this lady showed up!

The other picture is of Braden watching his TV like a big boy:-) He started doing this just a few weeks ago, I think he is fascinated by the moving colors. A few nurses at the last hospital walked past his bed, and then back-tracked…. They were cracking up about how serious he was, watching his “stories”. As you can see, he enjoys the TV – hopefully this is not how he got his little Michelin baby look:-)

You can reach us by phone in our room (718) at 832-826-0770 if you would like to visit, we would welcome the chat, provided you don’t make us tell you the whole back-story again:-) In a teaching hospital, we have to do that A LOT. We appreciate everyone’s well-wishes and prayers, we will send another update soon.

Kodi, Brad, Braden