March 15, 2012

Busy, Busy, Busy....Oh, And We're Headed Home

Today started off slowly enough with Tim still feeling a bit tender after last night's cath.  After a hearty breakfast (mushroom omelet, hash browns, ham, bacon, and hot chocolate) he was ready for some playtime.  When we arrived at the family life center we got some inside information that one of the Chicago Bulls was likely going to be making an appearance.  While we were watching a sing-along show Taj Gibson arrived and wound up sitting right next to Tim!  After the sing-along show Tim had some photos taken with Taj and got some Bulls swag from him too.

After this and lunch (leftover Chinese food from last night) we found out that the blood that was supposed to be drawn during the cath wasn't and so Tim would need to get some blood drawn today.  Of couse this was all of about 10 seconds before the phlebotomist arrived to do just that.  Tim wasn't pleased about this at all.  After a lot of screaming and threats of violence aimed at both the phlebotomist and dad the blood was successfully taken (6 vials!).

Not long after that another surprise was presented to us when someone from the transport team showed up telling us that Tim needed an ultrasound.  After getting confirmation from the nurse that this wasn't a mistake of some kind (it's necessary for Tim's listing on the transplant list) we took a trip to the ultrasound lab.  When we got there Tim refused to lay down and spent a full 5 minutes playing cat and mouse with the poor tech, laying down for a minute then popping back up when she was about to start the study.  Finally we got him to lie down while watching Captain America.  Then, in typical Tim form, he fell asleep during the study that lasted all of 10 minutes.

Shortly after that we had more surpise guests when dad was called to a conference with Drs. Vitullo and Gambetta to discuss the plan going forward.  As we had been hoping after the cath results the team thought that since the cath, and his heart rate after getting his pacemaker adjusted last weekend and the improved lab results after adjusting his meds that Tim was in stable enough condition to come home.  We are moving ahead with getting him listed for transplant, and he's going to be on a pretty short leash with weekly checkins with the cardiology team at Children's and restrictions on how active he can be (pretty much not active - no sports, no gym class type of activity at school, etc).  They also strongly suggested/required that we get an AED for the home so that if Tim experiences a life threatening arrhythmia we have a chance of getting him the help he needs.

Despite all that, it goes without saying that we are extremely thankful that we can spend the next several weeks to months operating as a full family out of our home instead of a divided unit based in Lombard and the hospital.  The road is not over by a long shot, but the path there is definitely a lot easier going for now.    We have met with most of the transplant team getting input from not just doctors, but the pharmacy, social workers and the financial team and feel at least somewhat prepared for what's to come soon.   Now, what we'll do when Tim is in the hospital for 2-8 weeks once the transplant comes to be will be a whole other story, but we will cross that bridge when we come to it.

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