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