Not home yet

I really  thought we were going home when I woke up yesterday morning! Alexander's night had gone great with no hiccups and the swelling in his face was gone by the time he woke up. Everything was great until he went for his chest x-ray.  As we were leaving the x-ray room, Alexander's oxygen saturations were in the 50's. After hanging an oxygen mask around his neck for him to breath several times and changing out his pulse Ox cable (a bad cable can give a bad reading), it was decided that he needed the nasal cannula to be put on.  After the cannula went on, it took him until this evening for his oxygen levels to finally be in his normal 75-80 range. The doctors and nurses were  unsure of why his levels dropped, as each one has a different opinions. I suggested for blood to be drawn to rule our anemia, which was done last night. I haven't heard the results, so i assume all looked good. Overall, it was a very frustrating day for  our  Superman. With having to stay in the hospital and be limited to what he  he could do (ie crawling). We managed to check out the playroom on the floor  with a potable oxygen tank- that seemed to help his mood.

Last night was another uneventful night, so  hopefully we get to go home this today! <3

No surgery needed! Hooray!

Wow! So far so good! So couple things: Alexander's procedure was a success. No surgery was needed! When Alexander went into the cath lab, his cardiologist was able  to balloon open his atrial septum to allow more blood flow to his upper body and lungs, and getting rid of the extra scar tissue. Alexander also behaved himself coming out of anesthesia. There was a huge weight lifted off my shoulders when I walked into the recovery room seeing my Superman awake and signing "all done" and requesting for "crackers" via sign language! :) tears of joy when I saw him!

Currently, Alexander is still in the hospital and will be for the rest of the night, just for observation.  We've had a couple of moments with low oxygen saturations and are hoping the low saturations are pain and swelling related. He's just received some medication for the pain and is now sleeping in his daddy's arms. Alexander will get a chest x-ray in the morning to make sure all looks good and if it does, we will be on our way home!

The night could still be a long one for us as his sleep schedule is a mess, the machines in the room keep beeping (his and his roommates) and the fabulous oh-so-comfortable pull out couches we will be sleeping on <insert sarcasm>.

So for now we are hoping for an uneventful night, for our boy to get lots of rest throughout the night and be back to his old self by the morning! Thank you for all of the  prayers and positive thoughts. Wes and I are so grateful for all of you! <3

Tomorrow morning will be an emotional one

Tomorrow morning at 8 am Alexander is scheduled for his heart cath. Tomorrow morning we have to be at CHLA by 6 am. Tomorrow morning I will be an emotional a mess, especially when I have to hand over my crying 15-month old to the doctors and then walk away.  Am I ready for that? NO!

Many have asked how am I doing so far? I've been fine because I haven't thought about  it however, I will soon be facing that day and then I won't be fine. I won't be fine until the procedure is completed and I see Alexander awake. The thought of all  this just turns my stomach. Blah!

Ready or not, here it comes!

So I ask for prayers and positive thoughts for a successful procedure tomorrow. Prayers that his cardiologist is able to clean up the scar tissue using a balloon. Prayers there are no other issues that need to be addressed. Praying that if there are other problems that need to be fixed, they can be then! Prayers that NO SURGERY is needed and PRAYERS that Alexander handles all of it, especially coming out of anesthesia! (For those of you unaware, Alexander has been under anestheisa six times and only once was there not a problem with him coming out of it).  Alexander is so much stronger and bigger now than before so I can only hope he will do that much better..

Is it June yet?

One week. We have a little less than one week. Next Wednesday, we will be at CHLA handing our Superman over to his cardiologist for her to (hopefully) successfully clean up the scar tissue that has formed around his ASD in the cath lab. I'm ready to be on the other side of this procedure. I hate thinking about what Alexander will have to go through. The recovery process, the pain, the waking up to find a tube in your throat and unable to move. I hate thinking about the pain meds he might be on and the lines he'll be hooked up too. And I REALLY hate thinking about the what ifs! Blah. Can it just be June already??

Alexander has been doing so much better now that we are over the stomach bug. He's finally back to his old self, beginning to consume solids better, and hit a growth spurt yesterday! He's constantly eating! :)

Once all of us are past this procedure, I'm planning to teach Alexander to begin drinking more often out of a cup and elminate his bottle usage, as we have begun weaning him from breastmilk (yes, he is still on breast milk). In addition, we will begin teaching him to fall asleep on his own. We are close to having fall asleep on his own now, however, we know that the sleeping routine is going to get screwed up with the hospital stay; actually many things are going to get screwed up. He will have a few set backs. AGAIN I ask, can it be June already!?

Alexander is continuing to increase his endurance with crawling up the stairs (not requiring so many breaks), he's learning to point, and has learned 12 signs: daddy, more, all done, milk, cracker, water, cereal, fish, book, eat, drink, and open. He's currently learning please. :)
Alexander has also received a speech assessment and we are now waiting for the authorization to come in so that we can begin speech therapy. Once again I ask- is it June yet??

As much as I'd LOVE to go out of town this weekend and check out the Memorial Day festivities, I will not be; and we didn't last year either. Last year we were in quarantine because we were inter-stage (between the two major surgeries) and this year we have his cath. Do I care? No! I'm glad to have him with me and will be enjoying the relaxation this weekend with Alex and his daddy. Maybe next year we can go out of town. :)

I will try to update as the day gets closer of what the procedure will look like. I'm sure it will consist of a very LONG day at the hospital. Thanks for following along, keep the prayers and positive thoughts coming. More than ever now! <3

Have a great holiday weekend! 

Happy Mother's Day & 15 months!

So it has been a little over a week since Alexander caught the stomach bug and it looks like he is FINALLY in the clear of it! It has taken 3 visits to the pediatrician and 2 visits to CHLA, to continuously make sure he was staying hydrated, while ourlaundry pile just kept growing.

The beginning of the week was hectic for us; Alexander was still sick, Wes wasn't feeling well for about a day and my allergies began to attack me. (I'm blaming it on the winds and constant weather change!) 'hiowever, the allergies have now appeared to look more like a cold. So on this Mother's day I am fighting a cold and trying to keep my distance from Alexander (him catching my cold is the LAST thing we need).

Anyways, this past Wednesday Alexander managed to stumble and bang his head on the wood flooring  leaving a nice bruise. The following night, he bumped his head again, luckily not in the same spot and luckily not another bruise.  My little superman just couldn't catch a break

On Wednesday, CHLA told his new Cath date was going to be that Friday. Obviously that didn't happen, but we made another trip to CHLA on Thursday to have Alexander assessed to see if he was okay for Friday. The nurse practitioner assessed him and said he looked good but anesthesia requested that Alexander be 100% better (which he was not then). This  information was fine with me because Alexander'st track record of coming out of anesthesia isn't great, so I'm all for listening to them! So his new date is May 28th. Two more weeks of having Alexander in quarantine. I hate CHD! I will always say it  because of how it deprives Alexander of the things he's missing out on and the constant catching up he will always have to do. I hate that i cant take him to the park or kids festivals. But it's only 2 weeks. Probably better seeing as it is suppose to be HOT this week... Oh, and almost  forgot to mention that with the many days of vomiting, we are back to square one of feeding Alexander solids! He gags at the smallest thing in his mouth!  Just Fabulous! <insert sarcasm>

2014- Mother's Day (15 months)

2013-Mother's Day (3 months)

BUT, Given everything that has happened over the the past week, I'm just GRATEFUL that Alexander is finally feeling better and that I get to spend today with him and at home, instead of a hospital! I hope all you mommy's have a wonderful day and I thank you for following us along on our journey! <3

Just not what we needed right now...

Things just haven't been going that great since my last update! For starters, ever since Alexander's cardiology appointment over a week ago, we've noticed Alexander's oxygen saturations dropping. He's typically between 77-83 (you and I are close to 100). In addition to that, I've noticed Alexander's mouth, fingers, and toes have been blue. When I check his levels, he's between 69-74 :( So on Wednesday (when I was suppose to be getting my license), I took Alexander to CHLA for a quick ECHO to look at his ASD (atrial septal defect- the hole in his heart) due to his oxygen saturations being low. The echo showed the same results as before, with a little bit more growth, but nothing that couldn't wait until Monday. Yes, MONDAY! May 5th. The date was changed AGAIN!The date change is because Dr. Starnes is available for consult if needed on that day.  

I also learned that a stent is not an option. His cardiologist informed me that the pressures in Alexander's ASD aren't great because of the scar tissue forming. We are hoping that his cardiologist can balloon his ASD but she is hesitant. If she can't, then Alex will have to go into surgery and have his ASD removed. Hence the importance of Dr. Starnes being available for consult.  A stent is not an option either as the tissue would grow around his stent and be much more difficult to remove  1-2 years from now, when he goes in for his Fontan.  If he does have the surgery, we won't know when it will be but we are assuming it would be either the same day or within the week. 

Then there was Thursday night. 5 incidents of vomit. from our Superman. One at 9 pm and 4 more at midnight! When I talked to his pediatrician at 1:30 am she said a nasty stomach flu was going around! How he caught this bug, we don't know. He's been quarantined except for his grandparents and therapist seeing him at the house. again- not something we needed! And my license- got that taken care of on Friday along with the the stomach flu too!  The laundry pile just got larger!

So now Alexander's cath has been postponed AGAIN for a few days in hopes Alexander gets over this stomach virus soon and stays hydrated. We will find out the new date tomorrow. 

This is not something Wes and I wanted. We would rather have the cath be done and over with. Especially because he's doing so well with everything else. On Tuesday night, Alexander pulled himself up onto his feet at the coffee table and when we put him at the bottom of our stairs, he crawls up them! His endurance is SO MUCH BETTER that it is hard for us to believe there is a problem. So for now, lots of positive thoughts and prayers for us! For Alexander to get well soon and for his cath to go well and for him to not need surgery! And for Wes & I to stay strong and healthy! Thanks for following along with us. I'll update you all when I know more! <3