Pulmonology...Plans have begun...

Today was a better day. He hasn't had a fever since yesterday morning and he was very happy all day (except when a nurse came into the room). He is definitely feeling like himself. Pulmonology assessed Alexander and had lots of questions regarding the last 4 years of his life. She informed us that there are a lot of test that can be run, but the first test is a high resolution CT SCAN of his chest. He will need to be sedated for this scan and it will be happening tomorrow. He is scheduled for 2:30 tomorrow afternoon. Wes and I are hoping his scan gets moved to an earlier time as 2:30 is a long time to withhold food or liquids (no food after midnight tonight and no more fluids after 5 am tomorrow). Pulmonology believes the problem he is having could be something he was born with or developed when he was an infant, but only time will tell. She also mentioned there is a possibility that Alexander will probably have to go home with oxygen but only require it as needed. So we are hoping that the CT SCAN gives everyone some information on what the next step will be.

Thank you for all of your positive thoughts and prayers. Hopefully we will have some answers tomorrow! <3

Wanting answers now

Less than a week and Alexander is back in the hospital. Last week's results from the cath lab told us nothing. No interventions were needed. They did find that Alexander may have pulmonary hypertension, so they started him back on Sildenfil (medicine number 16 now). While he was under anesthesia, the cardiac team saw Alexander's oxygen saturations go from 94-85, but nce they gave him a little bit of oxygen, his saturations went back up. So Alex was admitted for one night of observation, due to the cardiac team being worried about what his oxygen saturations would do once he was awake. Throughout the day, his saturations remained in the low 90's and while he slept, they dropped down to 87. Since he was below 90, was given some blow by oxygen (a mask lying next to Alexander's face pumping out oxygen-much easier than fighting him with a nasal cannula) and that helped.  He came home on Wednesday afternoon.

On Sunday morning, Alexander woke up in a cranky mood and was covering his right ear. When  I checked it out, I found drainage (again). I told Wes he was going to have to see the pediatrician on Monday or go to Urgent Care today. Throughout the day, Alexander was in a better mood and his ear didn't seem to bother him. Wes even took him to a fire station to visit a friend and let Alexander explore the fire station. He LOVED the trucks! But by 4:00 pm, Alexander had developed a fever. By the time we got to urgent care, his fever was 103. He was treated for the fever, swabbed for the flu (which came back negative) and prescribed antibiotics (again) for his ear. While at urgent care, we learned that Alexander's oxygen saturations were back to the mid 80's (great!). His fever broke 4 hours later.

Yesterday morning Alexander woke up in a great mood. However, the mood didn't last long. He soon became super irritable. Since he couldn't express what was wrong, I had to play the guessing game: "are you hungry?", "Are you irritable because your oxygen saturations are low?", "Are you in pain?", or do you just flat out-not feel well! I called the pediatrician and she scheduled for him to come in an hour later. 9:15 was our appointment and by 9:45 Alexander had a fever of 101, with a respiratory rate of 60 (this is super high). She called the transplant team and it was agreed that Alexander needed to go to the Emergency room at CHLA. At this point, we knew that he would probably get admitted. 8 hours later, Alexander had been put on 2 liters of oxygen, had a chest x-ray done, IV put in, blood drawn, and suction of mucus (to test for certain infections), and was finally admitted to Cv Acute. But oh my goodness! the test that they ran on Alexander and the screaming he did. Now that's older, he sees what's about to come and is listening to everything we say, but can't respond back. He can't say "why momma?", or "I don't like that",  or "It hurts!". It broke my heart! I'm having to help restrain while he screams and he looks at me with sad eyes of "why". It really just doesn't get easier. Some of the nurses have said "Alexander just has a complex heart". HELLO!?!?! He's not suppose to be considered a "complex" kid anymore! The whole point of a heart transplant is so that your quality of life improves! Yet, hereI am watching, my kid scream when a nurse touches his arm, wants to check his blood pressure, or when we have to give him daily medicine. He's so done and that was only day one. :(

From the blood test they took yesterday, we learned that he is fighting some sort of infection and that this may or may not correlate with his lower oxygen sats and ear infection. A referral for Pulmonology was put in and they should be coming by today.  As I've mentioned before; Pulmonary thinks it's a "heart issue" and Cardiology thinks it's a "lung issue". Once Pulmonary assesses him, we are hoping will learn what kind of test need to be run and/or procedures, to fix the problem(s).

We aren't sure how long he's going to be in the hospital. It's going to come down to figuring our the source of his desaturations,  the source/type  of his infection, and what Pulmonary finds.

Prayers and positive thoughts for our Superman. That he continues to be so brave with all of the test, and that we finally get some answers- because almost 2 months of this, is just to long.

24 days ago- A lot has occurred

 It’s been quite some time since my last post and everything had been going well until a few weeks ago. In the last 24 days, there has  been a trip the emergency room, several follow appointments with pediatrician and heart transplant team, an urgent care visit, and a 911 call. 

24 days ago we learned that Alexander's oxygen levels were sluggish, hanging out in the 80’s. We (cardiac/transplant team, pediatrician, and us) had been thinking Alexander had asthma due to his cough that he's had for months because his chest x-rays were showing ‘normal’. 24 days ago, I took Alexander to see his pediatrician due to his cough getting more frequent. It was then that we discovered his oxygen levels were at 88-89 percent, with a fast respiratory rate. His pediatrician was very concerned and sent us to the ER at CHLA. While there, his oxygen levels never dropped below 90 but couldn’t stay any higher than 94%. A chest x-ray showed no changes from the previous month visit and a breathing treatment was shown to help with his fast respiratory rate. The following day, Alexander’s  therapist mentioned that he was looking a little blue and breathing fast again. I checked his oxygen levels and was getting a reading of 83%. SO I called the transplant team and they increased his prednisone dose from .5 ml to 3 ml for 5 days. We all thought that would help his asthma/bronchial spasm. Within those 5 days, his oxygen level jumped up to 98%-it was great! Then a few days after the 5 day course ended, his oxygen levels dropped. On Halloween night, Alexander had no interest in trick or treating and was very unhappy. Once he was asleep, I checked his oxygen levels (I always get a better reading because he’s not constantly trying to escape from me) and it showed him at 75-77%. This led to a 911 call who sent the fire department out. Their pulse ox showed him at 91%. Mind you, he was awake and angry by this point. The fire department told me something was probably wrong with my pulse ox and to get a new one. They asked if they should bring him to the hospital or decline the trip. I declined, as he clearly wasn’t in an emergency situation. I did talk to the transplant team that night and it was suggested that we bring him back to clinic in 2 days to run some test. 2 day later, the transplant team watched his oxygen levels go from 91-84 percent! Alexander wasn’t doing anything but playing games on my phone. 84 percent!!  He’s not suppose to be that low with a normal heart function! We aren’t suppose to be worrying about how low his oxygen levels are anymore! That's suppose to be in the past- So what’s going on?!? Alexander has stumped the cardiac team once again and he will now be going to the Cath lab tomorrow morning! 

IF that wasn't enough, the follow day we had to take him to urgent care because he had an ear infection- poor guys ear was draining fluid  and he was in extreme pain. Luckily the urgent care visit wasn't more than 50 min and we were the only ones there (2 perks!). 

Tomorrow morning, we have to be at CHLA by 5:15 and his procedure is at 7:30. It is his annual transplant catherization. This procedure wasn't suppose to happen until the end of this month but because something is going on- we need answers now. So tomorrow, the cardiologist will assess Alexander’s coronary arteries, his pulmonary arteries, the pressure in his lungs, and take a biopsy of his heart to check for rejection. There is a 50/50 chance that some sort of intervention will be needed (i.e. stent, angiogram, coil collaterals). Wes and I REALLY want answers. We’ve just about ruled out asthma, as it’s just not possible for someone to have oxygen levels drop into the 80’s during a full blown asthma attack. We also suspect that his O2 problem has been going on for awhile, but because the signs weren’t 100% clear and having low O2 isn't suppose to be a problem anymore, we didn’t bother to monitor it. Until now…

So other than the crazy few weeks we had, Alexander has been doing well. As I mentioned, Halloween wasn’t great; visiting the pumpkin patch wasn’t great, but everything else has been going well. He’s really wanting to talk and has made some really great progress with his language. He can now say: stop, no, off, on, in, momma, up, oh no, uh-oh, shoes, and toes. He’s getting stronger every day and is finally mastered jumping up and down and is super close to mastering jumping forward. 

We've taken him to Magic Mountain a few times, which he seems to enjoy. We also took him on his first roller coaster-which he wasn't a huge fan of.. 

Prayers and positive thoughts for answers tomorrow would be most appreciative. We want answers for why he's having low oxygen levels and hopefully won't need to seek out another specialist. Prayers Alexander's recovery from the procedure will go smoothly and there will be no bumps during the procedure. Here we go again...<3

Memories made, a CHLA stay, and a Biopsy.

Alexander had a routine biopsy done yesterday. The results showed NO REJECTION!!

A week ago, Alexander had a follow up transplant appointment, with everything being on track. His doctors are continuing to wean some of his medications and he's been able to stop 1 of 2 of the blood pressure medications. Two days later, Alexander woke us up at 1:30 in the morning, vomiting. He continued to get sick every hour and at 7 am we took him to CHLA Emergency Room. Now I would have brought him in sooner, but transplant suggested to wait a little bit (at 3:30 am) since he wasn't looking or acting dehydrated. By 11:30 am, he was admitted to CV Acute for observation and  continued to hydrate him with IV fluids. Thankfully it was only 36 hours in the hospital and he was discharged on Friday.  The weekend consisted of resting before his biopsy.

Prior to all of this, we got to take Alexander to his first movie theater experice. Of course, the movie he saw was Cars 3 and he LOVED it! He had a great time. He sat through the previews and the entire movie. We also got to take him to Disneyland for 2 days. We spent the first day at Disneyland and the following day at California Adventure. Being his first time at both parks, he did pretty good and it was so memorable for us all! If you ask him who he saw at Disneyland, he will sign "Mickey Mouse" and if you ask him who he saw at California Adventure, he will sign "Lightening McQueen" with a big smile. <3

 For a mom whose son has had a bumpy 4 years of life, I teared up when Alexander got to engage in these new adventures. There was always a thought of 'what if' and so to see that he was finally given the opportunity to engage in these experiences, makes me cry with happy tears. I look forward to seeing his reaction to more 'first experiences'.

Even with the new adventures we've gotten to take Alexander on, he continues to be super busy with in-home school, in-home therapy, and private therapy. We are limited with our summer activities (such as going to the beach) due to his suppressed immune system, but we are making the best of it.

Since the GI bug and biopsy, Alexander is still not back to feeling like himself, but we pray that he will be within the next few days.  He loves to ride his bike, play with his remote control cars, or go swimming, and we hope that can all be resumed soon.

Thanks for continuing to follow us on Alexander's new journey. Here are more pictures from his latest adventures...

He's just tad bit interested in Lightening McQueen. :) 

Not a lot of Change, but this is GOOD

We are approaching 5 months since Alexander received his new heart and it still feels like a dream. It has been a little over 2 months since my last post and I don’t really have an excuse to why it has taken me so long to update everyone. Truthfully, there hasn’t been a lot change, which is GOOD. I was told by a very smart man, that everyone who reads my blog doesn’t just want to hear the negative news on Alexander, they want the positives too. So this is here is what has been going on:

A littler over 2 months ago, our boy with the new Superman Heart celebrated his 4th birthday! It was a fun and memorable one. His birthday celebration consisted of having breakfast with Disney characters, most importantly Mickey-who he just LOVES. The pictures prove how much he was so happy to meet Mickey Mouse!  

A few days after his birthday, he went to the Cath lab for a biopsy. The results showed minor rejection of his heart, but it was nothing that his current medication couldn’t help. He was the  first case, taken at 7:30 am and done by 8 am. We were home and exhausted by 11 am. FIRST TIME EVER for Alexander to be outpatient. His next biopsy will probably be in June. 

I continue to stay busy with taking Alexander to his ongoing therapy appointments (physical therapy at CHLA; speech therapy, occupational therapy in woodland hills) and then Alexander sees his academic instructor at the house; with each therapy session happening 2-3 times a week. Don't forget the doctor appointments too. The last few transplant appointments have consisted of a decrease in dosages with his medications, continuation of monitoring his blood pressure (it likes to stay on the high side), keeping him hydrated (his kidneys are working harder because of the anti-rejection medications), and keeping him healthy! Alexander has continued to show Wes and I what a ball of energy he is and how much he wants to learn. We are hoping that within the next few weeks, therapy services will start in our home, which means less driving.

As I said, not much has changed. Overall, Alexander is getting stronger, learning to ride his scooter, and getting faster on his bike. His new favorite activity is playing with his Lightening McQueen remote control car.  He’s getting pretty good at it too. 

I still haven’t been able to return to work due to the multiple therapy sessions Alexander is requiring right now, but I don’t mind right now. There are morning when I wake up and hate the idea of being in the house or on the go to the next therapy session, but there are many other times that trump those boredom moments. Those are the days that I get to see Alexander growing, trying his HARDEST to communicate with me, to independently complete a skill that we’ve been working on every day and see the smile he gives when things just “click”. He is still not talking, but we are hearing more vowel sounds and his voice is becoming louder. It has even gotten to the point where we actually have to ask him to have a quiet voice while inside a building. First for everything I guess. J 

Now that Flu Season is over, we are hoping the transplant team will give us the okay to enjoy more outdoor activities such as the zoo or maybe even Disneyland! We have to continue to stay cautious of germs because if he were to get sick, he could end up in the hospital. The transplant life has an entire new set of worries for me. The signs of rejection can start with his GI tract. Something that could be a minor stomach bug could actually be a sign of rejection and  because he has a suppressed immune system, his body will be working harder to fight off any infections. So any little illness, his body is worker harder to fight. With that being said, Wes and I must be cautious in what we allow Alexander to do for fear of getting sick, but at the same time, allow him to be a regular kid and start exploring what is out there beyond his bubble. The whole point of a new heart is for Alexander to continue to live and experience the things other kids is or has experienced. 

So until the next update, here are a few pictures. P.S. We took him to see the Easter Bunny right before Easter... now that he a healthy heart and no need for oxygen, the Easter Bunny experience was a bit different this year...

Play time with friends!<3

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.