A Birthday & A Trip to the Cath Lab

I just realized it has been a little over a month since my last blog post-oops! I'm not sure where the days went, but apparently they flew by. Time has flown by!

Speaking of time flying by, in a few hours, our Superman will be 4 years old and he knows it! If you ask him how old he is, he will hold up 4 fingers. :)

This past month has consisted of weekends getting out and about and the weekdays consisting of multiple trips to CHLA for follow ups and therapies. All which are going very well. We had a follow up appointment this past Tuesday and have been cleared to  return in 1 month. But before doing that, Alexander will be going to the Cauterization Lab. In fact, this coming Monday, February 13th, he will go to the Cath lab for a biopsy of his heart, to ensure there is no rejection (routine biopsy). His meds have slightly changed since last month, but nothing drastic. He is still on a steriod which is resulting in full cheeks, that we all love. :)  He's continuing to really show how much of a new boy he is, as he runs more, is beginning to jump and really trying to communicate with us. He gets extremely frustrated if we don't know what he is telling us via sign language and gets even more frustrated if he can't find it on his communication device.

 We had his IEP two weeks ago and needless to say, we didn't get what we asked for and are now having to really advocate for Alexander. Advocate on why we feel he needs the services to be provided in the home (even though the transplant has written a letter to the school district stating he cannot return to school for 1 year because of suppressed immune system). After receiving the letter and having the IEP, the school district still does not want to provide Alexander with the full amount of hours in home or provide speech therapy. Their response for not being able to provide an evaluation with an AAC specialist is because "he needs to be evaluated in an education setting". When we inquired about speech in the home, without the AAC evaluation, we were told the school could contract with a therapist but that Alexander would need to come to the school!  Needless to say, Wes and I are frustrated and taking it to the next step. Stay tuned for information on that in the next few weeks.

So this weekend we hope for Alexander to have a wonderful and memorable birthday weekend. We pray that his cath goes well on Monday, that there is no reason for him to be inpatient, and the biopsy results come back showing no signs of rejection.

Here are a few photos over the past month:

Signing Time Concert & Meet n' Greet with  Rachel & Hopkins. Alexander was thrilled.

Alexander's first time seeing snow! 

and he enjoyed it! :)

Going down a BIG BOY slide for the first time.  He LOVED it!

New Year. New Kid

We have been home for 18 days and the month of December feels like a blur-until I look around my house and still see stuff everywhere! Christmas decorations that need to be put away, laundry that needs to be done, hospital paper work that needs to be filed away, and old toys that need to be sorted out. Guess what we will be doing this weekend...

18 days ago I didn't know what to expect when bringing Alexander home. I felt anxious and nervous. He had a new medication schedule to work with, still on sternum precaution, and his balance when walking wasn't great. It was at a point of having to watch him closely because he would need help getting up off the ground or to make sure he didn't fall (remember it's an 8 week healing process. No falling until after January 28th. No lifting up under the arms or extensive stretching of his arms either.).  Then there was Christmas. I felt blessed to be home. We got to decorate for Christmas, finish Christmas shopping, wrapping gifts, watching Christmas movies and making Christmas cookies. All of the little things that are involved with the holiday.  It was great being able to make cookies with Alexander because he can finally be in the kitchen when the oven is on! When he was on oxygen, he couldn't be near the stove or oven. We even got to use our fire place.  It really is the little things Wes and I can finally do with our amazing boy.  We had hoped to visit with some family over Christmas and New Years but because they were sick, we stayed home. We did see my parents and Wes parents. So our Christmas and New Years was quiet and calm. Something Wes and I didn't mind at all.

Since the holidays, we have started to see Alexander change. He is a whole new kid. We took a trip to Lowe's after the holidays and for the first time, fear of losing my child entered my mind! 15 months of him on oxygen,  I was forced to stay right behind him. Prior to the oxygen, he had just started walking, so he wasn't going very far then either. He's moving so quickly now, that he's even starting to run! He's never been able to do that. So now we have to make sure he doesn't fall when he runs!
He's also loud and feisty now too! He lets out some screams when something doesn't go his way, he walks/runs away from us when we are asking him to do something, and his temper tantrums have included a growl! He's beginning to produce more sounds, so we are hopefully that he will start talking soon. Fun times in the Alleman household and I wouldn't trade it for anything! It's a whole new life for us! New Year New Kid.

Medications have tamed down a bit since coming home.  He's off one medication (no more diuretic-hello potty training time! finally!!), but a second blood pressure medication was added, as his levels are a little on the high side. Alexander just started this medication, so next week we hope to see some changes. We are still going to CHLA once a week for follow up appointments, but soon it will be every two weeks, then every month, then every six months, then yearly. Time will tell on when all of those can start to be spaced out. In addition to the 12 different medications he's on and the weekly visits to CHLA, we were also told that all of his therapies need to start at CHLA first and once he gets stronger, then his therapies need to be provided in the home. So I'm taking Alexander to CHLA for PT and OT twice a week. A speech evaluation is happening next week, so I'll find out how often he'll be receiving speech too. To recalculate, that's 3-4 times a week to CHLA.

To top it off, Alexander CAN NOT return to his school for 1 year, (I cry cry cry!). Because his immune system is low, he is at risk for getting sick very easily and his body will take a longer time to get over the illness the first year, which is why we have to be VERY cautious with were we take him. When I take him to CHLA or any other medical facilities he has to wear his mask. I'm disappointed that he can't return to his school (which he loves and misses) and will now be looking into getting some sort of in-home school program for our preschooler. If there are any educational administration people that know who I should be contacting to make this happen, PLEASE call me or email me! I can only do so much in the home. I don't want Alexander to go a year without any additional education.

1st time to Toys R Us

This week there has been some allergy symptoms floating around in our house. Wes and I have been living in our house with a mask on because we don't want Alexander to catch the same symptoms. He's been sneezing and coughing occasionally, so payers that he doesn't get sick.  I haven't been able to return to work yet, but as you've read, finding the time to go back to work isn't really there right now. Perhaps once a routine for Alexander gets into place, then I can find out when I can return back to work.

So New year. New Kid, with lots of new changes. Prayers that Alexander continues to get good reports at his follow up appointments, that his medications can continue to titrate down, that he doesn't catch a cold, and that we find in-home schooling for him! I will update in a week or so, with how the therapies, doctor appointments have been going, and how Alexander continues to amaze us all! 💕

Disappointed by some of the bowl games! 😂

Date Day to the Rose Bowl 🌹🏈

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!