It's the little things that make us say 'Hmmm'

So Day 3 and still in the hospital. The whole plan of staying over night was a good plan and we were all hopeful; but when cultures come back showing that you have Enterovirus and Rhino Virus (common colds) all of that goes out the window!

Yesterday morning we learned that Alexander is sick and that colds get better before they get worse. We are on Day 2 of this cold and have seen his oxygen saturations go from 83 percent to 53 percent within a few seconds! If he gets out of bed, they plummet. If he moves from one end of the bed to the other, they plummet. If he stays in bed and coughs, they plummet. If he is breathing through his mouth while sitting watching tv, they plummet.

We haven't even reached the worst of it: if that happens. So, I'm sure you're thinking the same as the rest of us..."hmm-perhaps staying in the hospital and riding the cold out or until Alexander is back to feeling more like himself, would be best."  Then there are the fevers. Why the fevers? What is his body trying to fight off if he only has a virual infection? "hmm...we wonder". Alexander's been getting 1-2 fevers the last few days as well. No one likes fevers. Alexander gets the chills, his heart rate increases and his oxygen levels drop. We are all hoping that the fevers are just post-op recovery and just his body trying to fight off the viral infection. If he continues to get the fevers and they begin to get higher (higher than 100.3), then they will need to do a blood test and see if there is another infection going on.

So for now, we hang out and give Alexander all of the rest he needs. Wes and I, and the doctors, prefer to be here instead of home. I don't want to be home if this cold gets worse.

We are not sure when Alexander caught this cold- he may have already had it but wasn't showing symptoms until Monday night. This is a reason why Alexander must try and stay healthy and why I expressed in my post a few days ago, the importance of staying home when you are sick. The little things we can fight off easily, are not so easy for our Superman. Thank you for all of your prayers and positive thoughts. Our boy still needs them. <3

Keeping the nurses on their toes

Alexander's cath went well. His cardiologist was able to get information for UNOS the results have informed us that everything appears the same as his last Cath (September 2015); therefore, transplant is still the best route for him.

Upon arriving to the recovery room, the staff gave Alexander a medication to help him rest, as he was very agitated with oxygen saturations dropping into the 30's. Once the medication was turned off, 45 minutes Alexander did it again-becoming agitated and saturations dropping to the low 50"s. 6-7 staff members quickly surrounded Alexander wondering which next step to take, while Wes and I stayed calm. This is Alexander. Always having a difficult time keeping his oxygen saturations up when recovering from a procedure. His cardiologist even warned the staff in the recovery unit. Since he looked so good they all questioned her-asking her "why is he being admitted?". An hour later they realized why.

Once out of recovery and into CV Acute, we learned Alexander had a low fever (99.5). He then fell asleep and after waking up, his temperature was 103.0! Tynenol was given, cold compresses were used and 30 minutes, his fever was down to 99.4. He now has NO fever! Let's hope it stays that way and that he continues to feel better through the night. Home tomorrow. We hope, we hope, we hope!

Keep the prayers and positive thoughts coming. Prayers for a smooth night, for most of us to get some decent sleep and that Alexander can go home tomorrow.

The Past, Present, & Future

We love the zoo!

It is finally time to update everyone on Alexander. Summer has come and gone, the school year has begun, and Halloween is right around the corner. Alexander is doing well. His energy level is getting better every day, he's learning so much every minute and continuing to thrive over all.

Next Saturday, October 15th is the American Heart Association heart walk in Santa Clarita. Wes and I will be walking in honor of Alexander. If you live nearby and want to join us, click on the link.  If you can't or won't be joining us but want to contribute by donation, click on the link. :)

Santa Clarita Heart Walk-October 15th-CLICK HERE

First day on the School Bus :)

Currently, Alexander is attending preschool 4 days a week, for 2.5 hours each day. He is riding the school bus to school but because is only on 1 tank of oxygen at school, which last 3 hours (because he is still requiring 3 liters per minute), he does not take the school bus home. He has his good days and bad days-but overall, he seems to be enjoying it.  He never wants to go home when I pick him up. :) When he's not in school, he's in therapy (speech, occupational, or physical therapy). He just had his follow up cardiology appointment and there is now a descion on what the future holds.

A few months ago, we learned that it would not be in the best interest for Alexander to have the Fontan (the third surgery of the series). If he were to have it, his quality and quantity of life would not be good. This is due to pulmonary pressures coming from the heart going to the lungs being high and his heart not pumping well. As of July, Alexander has been listed for a new heart. He is considered a status 2, as he's not 'critical'. So we wait. We do not know how long this wait will be. It could me days, weeks, months, or years. We hope that if it's years, Alexander can be weaned off of the his oxygen and wait for a new heart without it (how that would make things so much more simpler). We were told that his name has come up when hearts were available but he was just not a good match. This decision is a positive and not-so positive. Positive being he will have a new full functioning heart with all 4 chamers. No more pace maker, no more oxygen. The not-so-great news: he will be on anti-rejection meds for the rest of his life. If he were to miss a day or two, his body could begin to reject his heart-it is that quick. He also needs to try and stay healthy; getting sick makes his body and heart to have to work harder, so we will have to continue to be cautious with germs.

Signing Time Moment with Rachel & Hopkins :)

During his recent cardiology visit, we learned that Alexander will be returning to the Cath lab TOMORROW. You are now probably thinking:
"Wait. She said he was doing fine." and he is doing fine; this Cath is just routine for transplant patients. United Network of Organ Sharing (UNOS) requires updates on the organ's function every year. As much as NONE of us want him to go back into the Cath lab- it just has to happen. His cardiologist knows that when Alexander's heart is touched in any way, he takes two steps backward. Her plan tomorrow will be to get the numbers that UNOS needs and then get out. She is not going to do any sort of intervention, unless there is something that must be fixed (which is probably not the case).

As we head into flu season, I want to remind you all that if you or your children are sick-stay home.  A little runny nose or cough could be nothing to you but that person you walked passed in the mall or are standing behind in the check out line, it might mean something to them.

Please continue to pray for our Superman. His procedure is first case tomorrow morning (7 am) and he will be staying overnight for observation. Please pray or send positive thoughts that Alexander's Cath is uneventful, that all goes well after the procedure and that he can come home on Tuesday. I will update you all tomorrow on how his procedure goes. Thank you for continuing to follow us along out Superman's heart journey. <3

Just another day at Target