19 Days later

19 days later and we are home! We are all beyond exhausted but so happy to be home. Alexander didn't stop smiling once we got home. He didn't play much with his toys because he is still very sore, but the smiles never left his face!

He has been doing so good at the hospital, that everything else the Transplant team needed to monitor (i.e. meds),  could be done outpatient. SO tomorrow, Alexander will need his blood drawn at 7:30 am to check his levels for one of his anti-rejection meds. Luckily we do not need to go to CHLA's main campus and instead, will go to CHLA satellite campus in Santa Clarita. He has a follow up appointment with Transplant next Tuesday as well.

For now, we will be decorating for Christmas, making christmas cookies, finishing up christmas shopping and just enjoying being home as a family, enjoying the Christmas Miracle that happened.


Merry Christmas! 🎄

Not much for change, but change is nice.

There hasn't been much change over the last few days. Alexander is getting stronger every time he gets up to walk and with the motivation of his daddy, he walked up and down the halls in CV Acute. Everyone that knows him (which is just about everyone on the floor) was so happy to see Alexander walking and looking pink! For once the alarms weren't his that were going off. We didn't have a nurse running after us, saying "his o2 sats are in the 50's, he should probably stop". Change is nice.

Alexander is getting better with his medication as well. I've figured out a little system of giving him his 12 different medications and hopefully the system work better when we go home.

Tomorrow is Monday. Mondays are busy days in the hospital. A lot of stuff gets done. Alexander will be getting his blood drawn first thing in the morning. Followed by getting a urine test (he is not potty trained yet, so the bag they attach to the poor kid...is not pretty), chest x-ray, echo cardiogram, and an EKG. In addition, he will have PT, OT, and Speech. Don't forget vitals are checked every 4 hours and of course he needs time to nap and eat. I'm exhausted just thinking about it!

The testing that will be done tomorrow will help set up the next steps towards going home. As I said, not much has changed, but little change is nice. Prayers continue for our Superman to continue to recovery well and continue heading in the direction of home. <3

I have to add. Alexander got to see Santa Clause 4 DAYS before we got the "call". Timing.was.perfect.

Cath yesterday, Biopsy results today

I delayed on updating the blog because I was waiting to hear the results of Alexander's biopsy. Alexander did great during the Cath, with no issues or concerns. The biopsy results came back this afternoon showing no significant rejection, which is good at this stage.

Yesterday our Superman was a bit angry. Angry because he couldn't eat or drink and then after the Cath, he was angry because he had to lay flat for 6 hours! This was definitely frustrating for Wes and I, but mostly for him. He couldn't quite understand why he had to stay flat and why he couldn't eat or drink. But overall, he handled it well.

Today we worked on Alexander adjusting to his meds, making slight changes, including weaning off his Sildenfil (something he's been on since he was 6 months old). No more midnight meds! Wes and I are SO HAPPY about this (I'm sure the grandparents are too, as they had to make sure to be up at midnight when they babysat Alex).  He had physical therapy yesterday and today. He's not wanting to walk very much, but we are attributing that to being hungry on Thursday and today, sore from his Cath.

The plan for the weekend is to get Alexander moving more, (perhaps even down the halls), getting him eating more, and adjusting medications as needed. Our Superman is continuing to move in the right direction. Prayers he keeps it up, so we can figure out when home will happen. 💗

First Biopsy Tomorrow

Tomorrow Alexander goes to the Cath lab for his first biopsy. The biopsy will consist of taking a small piece of his heart and testing it for rejection. During the Cath, his doctor will also look at his pulmonary pressures, to see if he can come off one of his medications he's been on since he was 6 months old. He is expected to go into the Cath lab around 12:30 (3rd on the list), however, the two cases prior to him could take longer than planned, which means Alexander might not be taken until sometime after 12:30. Fingers crossed all goes as planned-waiting with a toddler who hasn't eaten since the night before, isn't going to be fun. Anyone want to come wait with him? :)

Other than the plan for tomorrow, Alexander continues to head in the right direction. We are continuing to adjust his medication, get Alexander acclimated to the new medications, get him eating better, and get him moving. Yesterday morning, Alexander stopped using assisted oxygen and has been without the assisted oxygen since-doing FANTASTIC! His oxygen saturations are between 95-100%!!

During physical therapy today, Alexander finally walked more than a few steps without getting tired. Then after his physical therapy, while he was "relaxing" in his bed, he decided to stand up in bed! Someone is clearly feeling better and realizing his body isn't as sore as he thought...I am predicting trouble by the weekend.

I ask for positive thoughts and prayers for our superman tomorrow. I pray that the results of his biopsy are negative and the Cath goes well. This procedure and results will tell us so much and help figure out the next few steps toward going home!! 💗

Busy Day for our Superman

So no Cath today. Since Alexander didn't have any more arrhythmias, the plan is still set for him to go to the Cath lab on Thursday. Today, was a busy day for our superman, whom didn't sleep well, which means momma didn't sleep well.

He had his daily blood draw, an echocardiogram, Physical therapy and Occupational therapy. PT and OT were back to back and his body was tired afterwards. However a nap didn't occur and, instead a little relaxation consisting of watching Mickey Mouse Clubhouse, cured it. During his therapy, he was able to stand for a few seconds, but preferred to sit down and play. Occuaptaionl therapy worked on manipulating toys. His fine motor muscles are weaker, which is contributed from surgery. He will be getting OT, PT, and hopefully speech therapy while in the hospital, as he continues to heal.

 Tomorrow we will work with PT on increasing his strength to stand. As well as,  teaching him how to move his body when he wants to reach for a toy (i.e. a car) that is out of arms length (he's currently trying to crawl, but that can't happen right now...not until he's healed a bit more). He's 3 though, almost 4, so we will see how that goes.

Alexander seems to be getting acclimated to his medications (yay!), but new ones keep getting added to it, so the gagging is still present. The scheduling of all of his meds (i've lost track on how many..maybe 11) to a time where his sleep isn't interrupted and they aren't given all at once, is a little hectic for us and his little body. His eating is getting better and no more loose stools! All positives :)

 I've said it before...if Alexander is happy and continuing to move in the right direction, then I'm happy. 💓

Oxygen support? Cath tomorrow?

An update for today because I'm not asleep yet.

Not much to update but that Alexander continues to move in the right direction. He is beginning to eat more often, getting better with his medication, and starting to move around. Around 4 pm today, they turned his oxygen support off. His oxygen saturations stayed in the low 90's for over an hour, but then began to dip into the 80's. We put the oxygen back on him at 1/4 liter and his sats went back up to the high 90's (this is great since he was on 1 liter this morning. I'm guessing by the end of the week, he should be off the oxygen for good! It was great to see his handsome face without the nasal cannula. It had been 15 months since I've seen it! (tears of joy!!).

We still need to get him out of bed and see what his levels do when he is walking. This hasn't happened for 2 reasons: one is, he's still sore and just not trying to move. The second is we are back on the 8 week sternum precaution. That moves we must pick our almost 4 year old up like an infant. All about scooping him; no picking him up under the arms. This makes it hard to readjust him in bed, getting him in and out of bed, and later on-into a car seat. 😑 When physical therapy comes tomorrow (they don't work on the weekends), we will be working on getting Alexander on his feet.

There is a possibility he will go to the cath lab tomorrow, instead of Thursday too. Last night, while Alexander was sleeping peacefully, he had an arrhythmia. It's nothing to alarming, but if he does it again tonight, they will want to biopsy his heart tomorrow (to make sure there is no rejection).

As for the post I had completed earlier...it really doesn't feel like Christmas while we are in the hospital with Alexander, until we step outside. I am very fortunate for the early Christmas gift for Alexander. There are no words to describe my emotions behind it all. I do know that we will make it the best that we can, regardless of where we are. I also just might take a suggestion from one of my best friends, and celebrate Christmas when we get home. If that means the stockings are put up and christmas music is playing in the middle of January, then so be it. 🎄

Please continue to send positive thoughts and prayers. This week will be busy and probably fly by. I pray that Alexander continues to move in the right direction and the results of the cath (whether it be tomorrow or Thursday) are what we want. 💗

Post op to the step down

When you spend time in the hospital, your days start to blend together. I'm quiet surprised the weekend is here and almost over.

Friday was a bit rocky for our Superman. He still wasn't eating the greatest, wasn't sleeping great, and  still struggling with taking his medication (if you know Alex, taking medication is typically easy). He was looking a bit swollen in his face and stomach. To help with the extra fluid on his body, the doctors increased his diuretic. We believe the act of taking his medication was aversive due to vomiting on his meds the days prior. :( He is also having very loose stools and very often (sorry if it's TMI); to the point that he's crying loudyl, cracked skin, and desaturations to the lows 80's (yes..now we all freak when he dessats to the low 80's).

Today was a bit better. Alexander started to eat more and tolerate most of his medications.There are still a few that we have to be creative with, in order for him to take it. His stools still aren't great but they are starting to improve as well. I have realized that I hadn't mentioned the fact that he is still on oxygen, but only 1 liter with saturations of 99 percent! The nurses are working on weaning Alexander off of it. I can't wait to see his face without it! Tears of joy will happen. He was also on an external pacemaker that was kept around 120 BPM. The external pacemaker is just monitoring his heart and keeping his heart rate up high to keep blood pumping quicker while his body recovers. Each day the pacemaker was turned down and as  of yesterday, he's no longer on it!

We also moved to Cv Acute (the step down unit) yesterday. This means we are closer to going home. There is still a lot to figure out including going to the cath lab for biopsy this coming Thursday (12/15), adjusting meds, get him up and walking, and intaking food.

Praying today is another better day: no more loose stools, taking his medication better, eating more, and wanting to move more. <3

Everything is new for now with Alexander and his new heart. New things to watch over, new medications to take, new oxygen and heart rate settings, and what a child with a great heart function can do! We have a whole new "scary" to think about. The past was his single ventricle: low oxygen saturations, getting sick lowers the oxygen saturations even more resulting in hospitalization, pace makers, etc. Now we have to make sure that his body doesn't reject his new heart, and that he stays healthy and doesn't get sick.

1 week and still shocked.

Today marks one week! Alexander has had his new heart for 1 week and I still laugh as nurses begin to panic when his oxygen saturations drop to 89 percent! Just a week ago he was walking quickly down the hall with sats of 60 percent! Just crazy.

SO today. Today started off well. Alexander slept through the night last night, which meant we all slept through the night! He had music therapy this morning, which he loves and consists of a music therapist singing, playing her guitar and sharing musical instruments with Alexander. He ate a little more than yesterday and had physical therapy and occupational therapy. Then by 3 pm he was becoming a little bit more restless and agitated. He suddenly didn't want to eat or drink and once again, gagging at anything we offered him. His respiratory rate began to climb as well. About 7 pm, Wes and I realized all of these little indications was telling us he was probably in pain. The nurse agreed as he hadn't had any pain meds since the morning and he had a pretty full day. He was then given his pain meds and some Benadryl for his itching (his incision is itching him). He's been asleep for sometime now and hopefully sleeps through the night, with a quick wake up when his (many) meds are due.

Tomorrow morning they will draw morning labs and complete his daily chest x-ray to continue to monitor Alexander, making sure it is just pain and nothing more. As well as, continue to monitor his new heart.

Thanks for following along on our Superman's journey. He still has far to go, but he's moving in the right direction. Please pray and send thoughts that today's small small bump is pain related and nothing more; prayers for more positives tomorrow as well. <3

Post Op Day 5 & 6

Post OP Day 5 & 6 have blended together. Since Alexander was extubated on Monday, Wes and I have been taking turns sleeping in the hospital.

Wes took the first night of staying with Alexander. Around midnight, he started having episodes of vomit. Throughout the day on Tuesday, Alexander was gagging and vomiting on anything that was put in front of him (water, crackers, medicine). While dealing with the nausea yesterday, he had one his four chest tubes removed (yay!). After that event was over, we noticed Alex was having tremors (a side effect to one of his anti-rejection drugs), that seemed to be coming and going with intensity, to the point of bothersome. In addition to all of that, Alexander couldn't sleep.  Throughout the day, Alexander would fall asleep and sleep for 10 minutes and then wake up. I stayed with him last night and slept more than he did, but not much.  Alexander was awake from mid afternoon on Monday until his nurse gave him Morphine to help with restlessness and he fell asleep at midnight. Then at 2 am, he woke up and didn't go back to sleep until around noon today!

But today, he napped! He not only napped, but ate more food, had the rest of the his chest tubes removed, and didn't get sick! Such a better day! He is continuing to move in the right direction and we hope that he continues to with each day!

Please keep the prayers and positive thoughts coming. Prayers that Alexander continues to move in the right direction, that he begins eat, that he is up for getting out of bed tomorrow, and that we all get some rest!

And then it happened...

EXTUBATED! Alexander was extubated yesterday morning! 

Wes and I walked to Alexander's room expecting to get ready for 8 o'clock rounds and instead, we walked into a room with a very awake boy. His night had gone very well and the weaning of the ventilator had been under way-with good results. An hour after we got there, he was extubated! The rest of the day consisted of removing 2 of the 4 iv's, stopping some of his sedatives and heart meds. He slept most of the day, including when I got to cuddle with him.<3

Today, the plan is to get Alexander up and some what out of bed. He still has 3 chest tubes in and hopefully tomorrow or Wednesday, he could have them removed. Today is the first day we get to see t what Alexander's new heart has to offer.

Thank you for following along with our Superman's journey. It should be a very different journey now.

Post Op, Day 3

Another quiet day of rest and recovery for our Superman. Queit days means Wes and I are able to try and get as much rest as possible. We know that once Alexander is extubated, the rest is gone.

The only thing that occurred today was his sternum getting closed. The surgeons closed his chest this morning and he rocked it! The rest of the day consisted of weaning from some of his medications. He was taken off one pain medication and put on Morphine. He was also taken off nitric, which is a gas that helps relax his lungs. Now that he's off of the nitric, Alexander has to work a little harder with relaxing his lungs (one step closer to being extubated). There was talk that he could be extubated tomorrow, but we've all noticed Alexander is waking up more and working a little harder to breath (appears like he is gasping for air). With this being observed, he probably won't be extubated tomorrow and instead, Tuesday.

We pray that he has a quiet night, continues to get the much needed rest that his body needs, and continues to make great progress!

Quiet Day

No news is good news, and for Alexander that is absolutely good! The doctors and surgeons have decided that tomorrow is when Alexander's sternum will be closed up. Once his sternum/chest is closed, then he will be reassessed, meds will be adjusted and then we will wait to see when he could be extubated (which could be the following day).

Alexander had a few issues today with unstable blood pressure. The doctors had stopped the dopamine drip early this morning, but had to restart it to help stabilize his blood pressure. The instability came from starting him on a diuretic to reduce swelling and pressure in his chest cavity, which is needed to close his sternum, however as the diuretic caused fluids to pee out, his blood pressure would drop and fluids and meds would be needed to get it back up. Always a game of balance! However, it is important for the pressure in his chest to go down because when they do close the sternum, it will tighten up everything inside. If there is excess pressure in his chest, this would cause his blood pressure to go up and then cause damage.

So lots of prayers for Alexander to have a quiet night and a stress free day for him and us tomorrow for the events to come! <3

Day 1 with a new HEART

It's Friday already? I woke up this morning thinking it was Thursday. The last 2 days have been surreal and  this week has just been crazy! It started with getting back into our routine; Alexander returning to school and myself returning back to work, to then getting a call a day later, informing you that your son is about to get a new heart! Time to put "normal" on hold for awhile because things are about to get crazy! 

With the last two days being emotionally crazy, today has been a quiet day. Quiet days are good. Mommy and daddy got to nap, we got a room at the Ronald McDonald House, and the nurses found a happy medium of sedation for our boy. He's been sleeping comfortably with minimal agitation. As he sleeps, the nurses have been able to wean him from some of his heavy medications, some of his heart meds, all while keeping him comfortable and happy. 

If he continues to have a good night, then the weekend will consist of some busy events for our Superman. Some of the events will be closing his chest. Once his chest is closed, the chest tubes will come out and he will be extubated! Time has to be given in between each event, as Alexander's body could stress out a bit. However, if he continues to respond well to one event, then another event will happen. It might be a busy weekend for Alexander and most definitely an emotional one for me. 

Keep the prayers and positive thoughts coming for our Superman. It's going to be a long road ahead, but seeing him move in the right direction makes us smile! :) 

Alexander's got a brand new HEART!

It's been 12 hours since Alexander came out of the OR with his brand new heart! Overall, the surgery went well. The surgery took 6 hours, with Alexander on bypass for 3 hours. He is currently have oxygen saturations between 97-100%! My boy has pink toes and fingers! :)

The heart is a great match for Alexander!

Since he's been out of the OR, Alexander has been sedated, still intubated and his sternum is still open. His sternum is open due to his pulmonary hypertension- Alexander's lung have high pressures (from his old heart) and haven't learned to relax, so now his new heart is having to deal with his high pressured lungs. The surgeons are hoping that his lungs begin to relax and they can close his chest by Saturday, which means, he could hopefully be extubated by the weekend.

A few hours ago, he had one small seizure, which is expected/allowed for transplant patients-but only one. I'm a little on the worried side of the seizures, from his previous history and knowing that some of the anti-rejection medications can interact with his current anti-seizure medication. He's also had a low grade fever, which is also expected, as his body is trying to "fight" the new heart.

Alexander knows we are with him in the room. He opens his eyes when he hears us and if he isn't sedated enough, he realizes he has a tube down his throat. He then begins to panic, gag and attempt to pull his tube out! This is heart breaking for me as he thrashing around with worried eyes, and there isn't much Wes and I can do but try to calm him down, remind him he's okay, and that he's so BRAVE!

Tonight could be slightly bumping as the nurses and doctors try to find the right amount of medication to provide Alexander, in order to keep him sedated safely and not continuing to wake up enough to panic. They need him to rest. Alexander needs to rest.  Please continue to keep those positive thoughts and prayers for Alexander as he continues to recover. Please also send prayer sand positive thoughts to the donor's family, that made the decision to donate their child's organs.

Alexander has a brand new HEART! <3

Thanksgiving and a new HEART

It's a been a little bit of time and I was actually going to write a blog update this weekend. Plans changed. 10 days ago,  Alexander was discharged from the hospital (the Friday before Thanksgiving). He's been looking great, had a wonderful Thanksgiving, and returned back to school and therapy this week. He was super happy to get back in our "normal" routine, as was I. While Alexander was in the hospital, he was bumped up from a status 2 to a status 1B. This means he's not critical that he needs to stay in the hospital, but that he will need a new heart sooner than later.

12:10 pm today, we got the phone call! A new heart had become available for Alexander! We arrived to CHLA at 2 pm and have been waiting (apparently the waiting is worst). He is tentatively scheduled for surgery around 4 am tomorrow and surgery could take anywhere from 5-7 hours. There has been a lot of blood draws and tear from our superman. He is already on immunosuppressant medications to help with his body not rejecting the new heart and currently sleeping peacefully. Tomorrow will be filled with ups and downs. I'm an emotional roller coaster right now, as I just don't know what kind of emotion I should feel. I'm guessing tomorrow will probably be about the same. So I ask for lots of positive thoughts and prayers that the surgery goes smoothly, and that our strong, brave, Superman does great! <3

Here are a few pictures from Halloween & Thanksgiving!!

Is it heart related? or just a cold? Or both?

I'm hoping that you all know by now-no news is good news and that we are just super busy with our Superman. Alexander came home from the hospital on October 14th and with everything resuming the following week (speech therapy, occupation therapy, physical therapy, and school). He went to the pumpkin patch and had a BLAST trick or treating on Halloween.

A few days prior to Halloween, Alexander developed a cough. He had no other signs but the cough. After taking him to his pediatrician, we were all in agreement that he was having some allergies that were triggering the cough, as he wasn't coughing anywhere else, except when he was home.

Around Halloween, I caught a cold and kept my distance from Alexander. 4 days after Halloween, Wes got sick. 2 days later, Alexander got sick (luckily I was better by this point). He started with coughing more frequently and running a low grade temperature for several days. By day 3 of the cold, his oxygen saturations were running on the lower side than his norm and he was requiring 4 liters of oxygen (his norm is 3 liters). After talking with transplant about his condition, we were told to bring him into the ER at CHLA. After spending 6 hours at CHLA and having Alexander's nose swabbed for a culture, they sent us home. I was fine with going home, as there was nothing different the hospital was going to do that I wasn't already doing. The following day we learned that Alexander has ParaFlu. ParaFlu is a cold that causes Croup. This cold is crappy because Alexander can't get a transplant while this virus is in his body and the virus can take 4 weeks until it is gone. :(

As the week went on, Alexander had moments of being energetic to moments of exhaustion. By Friday night, we had to increase his oxygen to 4.5 liters as he was barely staying about 75%. His cough was very frequent that night and we thought we might have to bring him into the hospital. Now that he was on 4.5 liters, we didn't have much more leverage before he had to go to the hospital (our concentrator only goes up to 5 liters).

The weekend went fine but then on Sunday night into Monday, Alexander's oxygen levels began hanging out 77% at 4.5 liters-this is not his norm. His norm is 88-90% on 3 liters. Something just wasn't right with Alexander. I once again, updated the transplant team about Alexander and they started to think that perhaps something is going on with his heart and that the cause of the low oxygen levels might not just be from his cold. They suggested we bring him into the Emergency room, who will check him over and then have him admitted to ICU. The transplant team would then talk about starting him on some heart medications. I was told that if it was heart related, then heart meds would need be started (via IV drip). If IV meds were started, then he would be staying in the hospital until he got a new heart. Slightly freaking out, I quickly packed up mine and Alexander's bags (Wes had to stay home as he is still ill with pneumonia) and we headed to CHLA. A few hours later, we were in CTICU and his sats were GREAT and all night they were GREAT! What the heck!? Because his sats were so great, he didn't have to be started on any IV drips (hooray!!).

During rounds this morning, a blood draw was ordered, a chest x-ray and an echo. The results of the x-ray and echo have not come back yet, but his blood test showed that his hemoglobin was low (perhaps from his Cath last month and the virus he currently has). He is currently getting a blood transfusion that we hope will help increase his oxygen saturations and get over his cold quicker and go home.

With that, we will see what tomorrow brings. As of now, we wait and observe. Observe how low his oxygen saturations drop with activity; observe how his oxygen saturations are when he is relaxed, and observe how frequent his cough is.

I have a love/hate relationship with this time of year. I love the holidays but I HATE flu season. A minor cold has landed Alexander in the hospital. This hospital stay is just another reason why Wes and I, as well as, our family are so careful with where we take Alexander and what we expose him too. Please keep the prayers and positive thoughts coming that we can get a better understanding of why his oxygen saturations are riding a roller coaster. Is it heart related? cold related? or both?...

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

Our days after his dental surgery

Alexander has been home since Thursday of last week. His procedure went well, his recovering from anesthesia was good and the surgeon did a LOT of work in his mouth. :(  Before I tell you what they did, I must first remind you that he is on 8 different medications. 6 of them are liquid and 3 of them are in a sugary syrup, with one of those  syrup medications he gets every 6 hours (that means he gets the medication when he's sleeping every night).

Alexander had two teeth extracted, 4 crowns, 6 baby root canals, and 6 white fillings!! :( :( :(

 With all that work he had done, let me just tell you that our Superman doesn't drink any juice, hardly eats anything sweet, and enjoys brushing his teeth (they are brushed anywhere from 3-5 times a day). It still didn't matter. :(

 I feel like a horrible parent seeing him with all the work done.  I try to remind myself that I've been doing everything correctly and that hopes with a few adjustments on medications (going to try a different brand), that maybe we can slow down the cavities

Alexander wasn't able to use a straw for several days so his drinking from an open cup got really good, but it made it hard when we were out and about. He was sore until the weekend, but appears to be doing better now. He has a follow up appointment next week.


Since we've been home, he's gone back to summer school (which ends this week) and resumed his therapies. School will be over for a month and so now it is time for Alexander to enjoy summer. More swimming, more trips to the zoo, and just more outdoor adventures that he is capable of doing-all while staying healthy! He has a cardiology follow up next month, in which we will have a better idea of what is ahead. Thank you all for continuing to follow us along our Superman's journey. <3

A picture is worth a 1,000 words...and a surgery...

February

 

March

April

May 

June

 

Over the past 5 months, Alexander has been busy being an active 3 year old boy! Tomorrow morning we head to CHLA for Alexander's dental surgery appointment. He has cavtiites that need to be filled from the medications that he takes. Because he has a heart condition, he requires a cardiac anesthesiologist to monitor him, which means he has to go to CHLA for the filling. While he is under anesthesia, they will fill the cavities and take x-rays. We are praying no teeth will be pulled and that he does fine coming out of anesthesia. He will be staying over night for observation too. We once again, ask for your prayers for a smooth and easy procedure tomorrow and that he comes home Thursday.  I'll be sure to post more after the procedure. <3