Long Day Yesterday and a New Surgery Date

Yesterday was a long day for the three of us. Given the long day-Alexander was a trooper!

 Yesterday, we met with Alexander's surgeon, Dr. Wells and was told Alexander would be having his surgery this Friday. That quickly changed when Alexander was being examined by a cardiac NP (part of the pre-op process) and began asking about Alexander's current cough and his nasal congestion. (To update you all: Alexander has been fighting something since his birthday, but we believed it was just allergies). She then spoke with the surgical team and Friday's surgery date was quickly taken off the table.  Alexander was then swabbed to see if he has a viral infection of some sort and  suggested that Alexander visit with his Pediatrician. After spending 5 hours at CHLA, we then went to Alexander's pediatrician to see what she suggested. 

We've now learned that Alexander does have a cold (either Rhinovirus or Enterovirus) and his surgery to have his pacemaker replaced will be on March 10th. Alexander's EP told us that Alexander has another three weeks left with his battery but that the week of March 10th is the longest we should go. So for the next week, we must keep Alexander in his "bubble" to keep him healthy for the next week as he can't afford to get sick again.  I will try to not worry that something is going on with his heart when Alexander begins to act differently! 

Keep those positive thoughts and prayers coming that Alexander stays healthy and his pacemaker keeps working well!  

A 2 Year Old and A Phone Call

The month of February will always consist of CHD Awareness week (February 7th-14th), heart-versaries in the "heart world" as well as birthdays. Our Superman turned 2 on February 11th, celebrated two years since his first surgery (February 14th) and since his first pacemaker (February 21st)  had been put in. 

 Alexander had a little birthday party with family members on a very hot Valentine's Day. He enjoyed himself and his birthday cake so much that he didn't take a nap that day! Needless to say, the birthday boy was cranky by the early evening and was asleep an hour earlier than usual. 

Right when I thought I could start to relax now that the birthday party was over, I thought wrong. This past Thursday, I received the phone call from CHLA that it was time for Alexander's pacemaker to be replaced. Wes and I had been sending bi-weekly pacemaker home checks (something we are required to usually do once a month, but now it's bi-weekly). The past home check we ran has told the doctors that Alexander's battery is running low and that it is time. So tomorrow we have a surgical consult to discuss implantation of the new pacemaker. This procedure is considered outpatient procedure and the procedure itself should only take 30 minutes. As we all know Alexander, he does things at his own pace and therefore, tere is always the chance that he may need to stay overnight. There is a possibility that when the surgeons go in to replace his pacemaker, they may discover that need new leads. If that is the case, they would need to open up his chest (not what we want and is worst case scenario). When CHLA called me last week, they suggested that we pack a bag because there is a good chance Alexander would be admitted and perhaps the surgery happen the following day! But we won't know any of that until tomorrow. What has me nervous is that when I got the phone call, I was told that by Wednesday, there is a good chance that Alexander's battery would be at EOL status (End of Life) and begin to beat at a fixed  rate of 70 beats per minute (he currently beats around 120 when active and 80-90 when asleep).  I've been constantly checking his pulse though and all seems fine. So as i just mentioned we won't know until tomorrow!

So for now we just watch Alexander become a toddler and keep us on our toes every second of the day! A new update will happen in the next few days. Thanks for continuing to follow along with our journey

Home for a week!

The over due post. It's been 1 week since we've been home and the adjustment has been emotional. One week ago, Alexander was discharged from the hospital as it got to the point of him only being there for observation and test that could be done outpatient.

Alexander seems to be very happy being home. Actually, we all are happy, I'm just a mess though. There is nothing comforting about coming home to see your place in the same condition as it was when the paramedics were here. Nothing to comforting about the fact that anytime Alexander displays something different, I think something is wrong. He has a warm head-I think he's getting a fever. He moves his hand funny and I think he's going to have a seizure. Worry. Worry. Worry. I need a day of relaxation, but I don't see that in the future anytime soon.

Alexander's hand has not returned back to normal.  He gets frustrated and discouraged when engaging in some of his favorite activities. In addition, to struggling with his favorite activities, he is also having a difficult time pulling himself up and crawling. He falls over when he tries to pull himself up or falls down when he begins crawling to fast. It breaks my heart each time I see him try to pick up a ball or put a puzzle piece in place and he can't. :( I try to remind myself about how strong my boy is after going through everything he's ever been through and that helps stop the flowing of tears, but sometimes that just isn't enough.

Alexander is also not eating or drinking very well either. We believe it's one of the side effects of his anti-seizure medicine. His neurologist keeps telling me to give him time for the medicine to adjust. Difficult for me to do given our boy is VERY active and burning calories quickly!

On Friday, we made a trip back down to CHLA. Since Alexander's hand is still not back to norma,  his neurologist suggested it was time for the CT Scan with Angiogram. The results so far have come back normal-yay! However, he still believes that Alexander had small stroke which brought the seizure on. We may not ever know if he did or did not have a stroke unless he has an MRI down (something Alexander can't have done because he has a pacemaker). We still don't know where the fever came from and if any of the events that occurred was triggered from the fever. I'm determined to find out more about that!

So now that we have been home  for a week and adjusting to everything, the worrisome has seemed to lessen. Alexander's therapy session have increased to help with use of his right hand, so hopefully we will see more and more improvements with it.

Praying that things get easier for us, that we get more answers about that horrible event and that more positive outcomes begin to occur for our Superman!