So, I would like to update everyone on what is happening as of Thursday night.
17:30 - Right now, Emilie and I are waiting to be called back to the post-op recovery area on the fourth floor after a successful pericardium drain placement. Not only did they place a catheter, they also drained off 130 ml of fluid that accumulated in less than 48 hours. We found out from the Catheter Lab staff that Xander set the record the other day with the initial 410 ml drained off two days ago - not a record we wanted to set!
The EKG this morning showed that there was less fluid than 48 hours ago. The BMT docs were going to wait and see if the fluid would clear on it's own, but this morning, Xander started showing strong symptoms. Unfortunately, the discomfort was great and similar to that of a heart attack. Xander's left arm hurt and chest and back were tight and painful. It was decided that a drain was necessary - there is no removal date "set".
18:00 - Xander is recovering. The dependent drain installed is funky. It makes me feel weird that the catheter that I can see runs into Xander's pericardium. They drained 130 ml in the lab and the drain already reads 50 ml. Xander is VERY much in pain - this is the most pain I have seen my son in. He really wants pain meds, but we need to wait until the anesthesiologist can clear him first.
Xander is really quite out of it. This procedure he received 2 mg Verced, 75 µg Fentanyl, 30 mg ketamine, 300 mg proprofol. I guess I don't need to tell you he is REALLY groggy. They did not give Xander an pain meds in the OR.
19:00 - We are back in Xander's room now. Xander really needed pain meds so he got morphine after we moved him to his bed. Getting him transferred from the gurney to his bed was a real challenge. Xander can't move his left arm without excruciating pain. Xander is complaining that something is wrong because he can feel his heart beating and shaking his whole chest. It looks like it sounds! I can see his chest pounding. Nurse Tammy hustled and got Xander morphine.
20:30 - Emilie needs to get going home to take care of Molly. Xander is clearly in distress. The nurses on our floor are great but they are hematology/oncology/BMT nurses, they are not intimate with pericardial drains and cardiological procedures like this. Nurse Gretchen (one of our favorites) was super wise and called for a PICU nurse to come by and check Xander out.
21:00 - Susan, a PICU nurse was here and let me tell you, Morphine makes Xander MEAN! He has not been especially nice to anyone since the procedure, but he was really rude to Susan. Fortunately, Susan was really cool about it. Susan made some immediate changes in Xander's treatment. Susan recommended that we get Xander oxycodone, kytril and hook up the EKG STAT. Although Xander's heart looks like it is going to beat out of his chest, the EKG showed that he is not actually in cardiac distress. He can stay here for now.
22:00 - Xander is more awake now. He has needed a total of two dosed of morphine and the oxycodone, but is now much more chilled out and awake. He wants to watch a movie, so we decided on "Saving Bobby Fischer". Coughing, sitting, and urinating are the real challenges right now. I hope tomorrow is better.
0:00 - The movie was great. Xander love chess, so what a great movie. A total of 90 ml have been drained off of Xander's heart since the procedure. The level has stabilized since 22:00.
05:00 - It has been a fairly restful night, however, Xander woke in pain shouting for more pain meds. Our nurse, Amy, was spot-on when she had the oxycodone ready and waiting. It took 1 minute from pressing the nurse call button to get pain meds. We are trying NOT to give him morphine if possible as it peaks then is not very effective but the oxycodone is longer lasting.
Please keep us in your prayers.
Peace & love,
I'm so sorry to hear you guys are going through so much... I know that you are all strong and that you'll get through this all.... We continue to pray for you and look for how we can help all of you....ReplyDelete
Good call on the PICU nurse, you guys are in the best place you can be that has all kind of specialist to address the tight rope wire you are walking...
Xander, keep up the fight man, we are pulling for you.
I am praying for you guys throughout the day whenever I have a quiet moment and when I do, I ask for strength and recovery for Xander. I hope you can feel the love we have for you guys because we try to send it over to Mott as much as we can!ReplyDelete