Home again, finally

Elias is finally home from the hospital. We actually came home Wednesday night after being told several times yes and no to discharge. Elias had a very low heart rate that the doctors feel was caused by the medication he was on. Ultimately they decided it was safe to go home with a follow up EKG next week. They are trying to decipher if this is medication related or yet another new issue. The consensus is medication related so we will hope they are right.

Since the last update Elias became septic with a serious infection in his urinary tract. Those who follow us on Facebook know about this but for the benefit of our readers we will recap. He became septic very quickly, in the span of just 2 hours. The doctors were very concerned and a great many teams were involved in the process. As we mentioned above the cultures tested positive for a serious infection in the urinary tract. Having indwelling catheters for drainage are the likely contributors and cause. The big concern was that this did not find its way in his blood. That would have made things critical. Thankfully we have a hold on it treating him with IV antibiotics around the clock here at home.

The recovery time is going to be much slower than we had hoped. Elias is unable to stand at all as well. Until yesterday he wasn't able to sit up for long periods. He ia doing better with that now so we suspect standing will come soon. The post surgical care is more intense than we were led to believe as well. It is the most difficult times of the day. He is in obvious discomfort and becomes extremely agitated. Nights are pretty bad as well. He just can not get comfortable enough to sleep. We continue this regiment caring for the drainage tubes until the end of October. We then return where 1 will be removed but the other stays in place for 2-4 more weeks while we begin the catheterizing and work it towards a specified goal. So it looks like he will have a drain tube until around Thanksgiving. UGH! We were told that initially we will be catheterizing his mitroffanoff every 2 hours around the clock until they feel things are clearing based on volume. We then move to increments of every 3 then 4 hours. Hopefully after the new year we can evaluate effectively if this is something we will have to continue permanently or of it will be temporary.

Overall this has been a very difficult and trying chapter. The outpatient urology team failed to paint a realist picture on what to expect both during the hospital recovery as well as at home. The intensity of care was also a shock. Adding the sepsis on top has really made the days very full. Elias is still very weak which is unlike him and at times it frustrated him. Not having any real way to explain and communicate to him what and why this is happening is difficult. It adds an extra layer of frustration and stress on us all. Just going near the drain tube causes him to anticipate pain and begin to cry. Another out of character response for him. So you know that it must be very uncomfortable to him. We are happy to be moving forward with this now and hope he finds comfort soon.

Thank you all for your thoughts prayers and concerns. We are so appreciative of your support. We have some comments and emails still to answer and as soon as we are able those of you who have done so will be getting our response. We also have a great deal of thank you notes to write for the efforts with our home. This is a very informal thank you and we hope to have the time to get the proper thank you out soon. We just wanted everyone to know how grateful and blessed we feel with all of that. This surgery coming right on the heels of that was difficult but seeing Elias smile when we walked through the front door was priceless. This is the home he knows and loves. It will be very helpful in his recovery process too. So from the bottom of our hearts thanks you all for what we have accomplished with this so far.