Going home TOMORROW!

The day has finally come. Alexander gets to go home! 13 days post op and we are finally going to be home.

I haven't updated the blog in a few days, as there hasn't been much to post about. Wes and I have been
dealing with Alexander's stress level the past 5 days (ever since we came to CV Acute). Alexander gets extremely upset when a nurse or doctor touches him. There has only been a few times where he was okay with a hospital staff in the room with him, but majority of the time he has been an unhappy boy.

Alexander gets terrified that something is going to happen to him each time we lay him down. So terrified that he immediately starts to panic. When he gets upset, his heart has to work harder, which raises his blood pressure, which means he is now on Enalapril for his blood pressure. To add to all of it, Alexander is still having problems being weened off the oxygen, which means he will be going home with oxygen.  This is something Wes and I really DON"T want to do but it is only temporary and it is just another obstacle we must overcome with Alexander. Having Alexander on oxygen is going to bring quite a few changes into our household and daily routines, but as always, we will manage to fit it in and overcome this obstacles.  Prayers and positive thoughts are appreciated as we pray that Alexander is only on oxygen for a very short time and that he continues to thrive much more once we are home!  Thank you all for following us along our journey.

He just needs time.

Yesterday, Alexander's morning started out great. He was off the ventilator, off the heart medicine, and weaning off of the narcotics. He had begun to consume some foods and drinking some fluids. He was interested in his toys and occasionally smiled when we read to him. However, by the afternoon, that all changed. Alexander began showing signs of pain and it was noticeable that the site of his PICC line was inflamed. The nurses treated the PICC line as needed and stopped using it. Since the PICC line was not to be used, they had  to put in new IV in because some of his medications weren't oral. He also slowed down on his eating and drinking to the point of not wanting anything in his mouth. So now we were stuck with a very unhappy, dehydrated boy that wouldn't take any of his oral medications. By 10 pm, Alexander had vomited three times and I was just a wreck! I just kept asking myself: What the heck happened to our boy? What changed from this morning to now?

We still aren't sure what all happened last night and believe it may have been a combination of things. But today, Alexander seems to be feeling a little better. We've been slowly offering soft foods to him and water, providing some stimulation with his toys and favorite movies, and most of all, giving him time to rest. We've gotten a few smiles today and hope to get more. He hasn't gotten sick again and we hope we are past that as well!

We have been advocating more than ever at this point on what Alexander needs and how he's feeling. Sometimes the nurses don't listen to what we suggest, but they seem to be now! We've also learned that we will be going to CV Acute sometime this evening/tonight! Hooray for transitioning to the step down unit!! That means we are closer to going home.

Alexander still has a few obstacles to jump over before we can go home and we hope that he doesn't have any more set backs that will prolong us on going home. Keep the prayers and positive thoughts coming for our Superman to continue to recovery well and on his own time. <3

Post-Op Day 5

When we first met with Alexander's cardiothoracic surgeon, he told us Alexander would probably be in the CTICU for 1-2 days, and then spend 3-4 days in CV ACUTE  (step down unit). Well, here we are post-op day 5 and still in CTICU. If it's one thing I know and many of the medical staff are learning, you can't push Alexander or he pushes back and we end up taking a step or two back. We must let him tell us when he's ready for changes.

Yesterday continued to be a great day. Alexander was taken off of the Nitric in the morning, his third chest tube was removed, he was started on a form of Pediasure through his NG tube, and he came down to one narcotic medication, one heart medication, and one pain medication! His blood pressure and oxygen levels were maintaining too. Yesterday afternoon a PICC line was put in. For those of you unfamiliar with a PICC, it's a another type of IV that allows more usage for different medications and last longer in the body. Whereas a regular IV can go "bad" over a few days.

After the PICC line was placed (which required some heavy sedation), Alexander's oxygen levels and pressures began to dip. After running a few tests, it was determined that the sedation was too much and once again, it was his way of saying "Hey, that's enough!". They backed off on the sedation and allowed him to wake up a little more. By the late evening, his oxygen levels and blood pressure improved to acceptable numbers. Since Alexander is no longer on Nitric, the next step would be weaning from the ventilator.

Today's plan was to wean from his medications and from the ventilator. Around 3 PM he was EXTUBATED!! :)

Wes and I are so happy our Superman has jumped over another hurdle! We are that much closer to going home. Alexander still needs weaning of medications to complete, coming off of oxygen, and learning to eat by mouth again before going home, but he is THAT much closer! Thank you all for continuing to follow along our journey, for your positive thoughts, prayers, and support!! <3

Making Progress towards Recovery

When your child is intubated, sedated, and on a paralytic drug, you feel helpless! So when I get a chance to put lotion on dry patches of his skin I take it!

Yesterday, I did not write up a post as there was not much change. It was another quiet day of trying to balance out Alexander's oxygen levels and his blood pressure. Trying to find out which narcotic medicine to decrease and which muscle relaxer to increase. It was not the type of day I wanted, as I want things happening for the good - not at a stand still. But with Alexander, you must make small changes and take baby steps in order for him to respond the way we want.

So today has been better. The balance of blood pressure and oxygen levels has improved tremendously; seeing oxygen saturations at 80 instead of 65 and blood pressure is 120 instead of 80. They took out 2 of his 3 chest tubes, eliminated 2 narcotic meds, removed his catheter, are beginning to give him Pedialyte and are no longer using the paralytic drug! This is the type of change I like to see! :) Keep it up Alexander! You are our superhero! <3

In addition, the last post I mentioned, he may need the battery replaced in his pacemaker and may need to go to the Cath lab. BOTH will NOT be happening as of now. :) The doctors were able to provide more life to his battery (3-6 months span) and the collateral he has is not preventing his oxygen levels from dropping, so there is no need to put him through another procedure. The battery change in the pacemaker may still happen, but that is the last thing anyone is worried about at this time. So overall, YAY!!! :)

Thank you all for the continuous support and prayers. He continues to need the prayers for a stable recovery, to continue to do well with being weaned from the nitric and the ventilator and praying he will be extubated in the next few days!

The Bumpy Road to Recovery

Our Superman! What can I say, but that he ALWAYS thinks he is in charge and is going to give every doctor and nurse here, a run for their money!

Yesterday was a VERY long day. It started off with arriving to CHLA at 8 am (as instructed) for surgery to be at 9:30. Alexander hadn't had anything to drink or eat and by 10 am, we were all still sitting in the waiting room, waiting for Alexander to be taken into surgery. It was then that we found out that there had been some incidents in the ICU that required Alexander's surgery to be pushed to 11:30. So now we had a CRANKY toddler. He fell asleep at 10:30 and was taken from us by anesthesia at 11:30 still asleep. By 4 pm we learned he was out of surgery, that all went well, and that we could see him.

I wasn't in the CTICU for 5 minutes, when Alexander oxygen levels desaturated down to the 40's, which resulted about 20 medical staff swarming into his room yelling "I need this, and let's get that". Needless to say, I once again lost it! Once he calmed down, we were told that his pacemaker wasn't working correctly and would need to be interrogated often to figure out why it wasn't working correctly.

Today, Alexander's road to recovery has continued to be bumpy. His oxygen saturations continue to go up and down, along with his blood pressure. Today has been consisted of keeping Alexander comfortable, keeping him sedated, and on a paralyses medication to keep him from moving around and to help his lungs relax. Today also consisted of having an echo-cardiogram completed and his pacemaker interrogated. The results of the pacemaker showed that his pacemaker is having to work much harder to keep up with his body, resulting in a lower battery life. A few settings were changed on his pacemaker to help increase the life of the battery, however there is a possibility that he would need a new pacemaker put in. If this happens, it could happen as early as next week. However, the pacemaker situation is something that isn't as important as the rest of his ongoing problems.

One problem being that when they did a bubble echo-cardiogram they discovered he has a few collaterals. To remind you, a collateral is another way for the blood to flow to the heart, by passing through his lungs, and are formed from high pressures in his lungs. Collaterals mean Cath Lab. Cath Lab means another procedure! If this happens, this would could be happening next week as well. Which means he will stay intubated until next week.

There are so many things that could happen next week but no one wants to schedule anything and to instead, give Alexander's body a chance to rest. We are just at 24 hours since his surgery and they want to give him the weekend to relax and let his body adjust to the new anatomy.

Wes and I want to thank all of you for showing your support and saying a prayer for our superman! He needs them more than ever now as the road to recovery is still bumpy. We are praying the weekend consists of more positive news than negative and that he begins to be weaned from his many medications he is on. I will continue to update you all as I can. <3

The day has come: Surgery Day!

Tomorrow is the big day for our Superman! We are to check-in at CHLA at 8 am, with surgery to start at 9:30 am and  should be 3-4 hours. 

Today was pre-op, which consisted of NP's assessing Alexander to make sure he's healthy for tomorrow and having his blood drawn. The nurse had to stick him twice to finally get the draw and wrap his arm 3 times!! Poor guy was exhausted by the time she was done. After our visit to CHLA, I learned that we got a room at the Ronald McDonald house (RMH), which is reassuring that we won't have to get up super early to be at the CHLA on time. 

Over the weekend, we spent some time in Ventura. We thought, if we are going to be in quarantine, why not stay where the weather is cooler. While we were there, we got a chance to go to the Pumpkin Patch. We got there when they opened and had the whole patch to ourselves. Alexander enjoyed himself and there were no germs. :)

Tomorrow we hand our big boy over to the miracle surgeons. We ask that you wear red in honor of our Superman or (if you have one) your blue Baby Alleman Superman Heart shirt. We ask that you send positive thoughts and prayers that our superman stays strong; that his procedure goes great and that his recovery is better than ever. We want no surprises or bumps in the road toward recovery. We once again thank all of you for your support, and prayers and for following us along on our Superman's journey! I will update as I can tomorrow! <3

We are in "Pause" Mode...

I first began writing up this post on Monday night when we learned that Alexander's surgery should only be a few hours, with staying in the ICU for 1-2 days and then a few days in CV Acute for a few days. IF he did GREAT, we could be home by Monday. Well that isn't happening...

Wednesday was an emotionally exhausting and frustrating day! Alexander cried all morning and by 1 pm, he was tired of people touching him. He had his nose swabbed for Enterovirus, blood drawn, and a chest x-ray. We went home and packed up the car to head to the Ronald McDonald House. As we were getting ready to leave, CHLA called us to inform us that Alexander tested positive for either Rhino virus or Enterovirus!! We were stunned because the kid has NO cold symptoms! Let me just mention that this is not the very serious flu that is going around (Enterovirus D-68) and is instead just like a common cold.

At that point, everything was in a stand still. Yesterday, we headed back down to CHLA so that Alexander could be tested again for the Enterovirus. The poor kid began getting upset as soon as the nurse came into the room to check his vitals. This afternoon we learned that Alexander does have Enterovirus! UGH! However, we (the doctors, Wes, and I) all believe that Alexander had Enterovirus when he was sick 3.5 weeks ago and it is still lingering. So, NOW the plan is for Alexander's surgeon to decide on Tuesday when he wants to do the surgery. Alexander's surgeon only operates on Mondays and Thursdays, so this coming Thursday would be the earliest.

I feel like our life is on "pause" right now and we are just waiting for someone to say "go". Hopefully that day is Tuesday, and the pre-op day will be successful and the scheduled surgery can happen. I am certainly NOT ready for any of this but I'm tired of waiting and rescheduling.

SO...positive thoughts and prayers sent our way, are appreciated. We need Alexander to stay healthy and strong and for him to be over this virus. I will update you all soon! Thanks for following us along on our Superman's journey.

Update time: Good news, Okay news, and Not-so-great news.

Now that all of Alexander's appointments are over with, I can now update everyone with the good news, the okay news, and the not-so-great news.


The visit to the geneticist went fine and the appointment with his orthopedic surgeon went okay. Alexander will not need surgery on his foot and instead, will need to be fitted for a brace; one for each foot. He will probably have to wear the braces for a few years. When he is older and he is having any pain in his foot then we surgery may be needed. 

Alexander's sonogram went well  and the meeting with his neurosurgeon (regarding the bump on his back) went okay. Since Alexander can't have an MRI because his pacemaker is not MRI compatible, more tests will need to be done, with one of them being followed by a urologist. That appointment is scheduled for November. His neurosurgeon did mention however, that since the bump comes and goes, instead of just showing up and not going away, is good news.

The visits with his cardiac electrophysiology  found nothing wrong with his pacemaker and the results of his EEG showed no seizure activity!! YAY! So the consensus is that he is a very active toddler with half a heart, that falls asleep when he finally relaxes! 

Now for the not-so-great news. Alexander's cardiology appointment didn't go so well. I honestly knew something was going on with Alex by the blue lips he was showing in pictures and his oxygen levels being lower than we'd like. Well, the tissue around his Atrial Septum has grown back. If you remember back in June, Alexander went to the cath lab to have that tissue removed. Well it has grown back and is something we knew could happen. So instead of sending him back to the cath lab over and over again to have the tissue removed, Alexander will be having his Atrial Septum removed. So an unexpected open heart surgery has been scheduled for next week, October 9th. :( This is not what Wes and I want at all!  However, it is better than having Alex constantly going to the cath lab and have the tissue removed that we know will grow back. The positive of having this surgery is that the tissue won't be growing back and he SHOULDN'T need another surgery until his Fontan (the 3rd of the series) in 2016!  We don't know any additional details about the surgery and won't until we meet with Alexander's surgeon on Monday, October 6th.

So this weekend will consist of lots of family time in quarantine. Alexander is finally over his cold he caught three weeks ago and  we need to keep him healthy. We aren't ready for next week but instead want to be on the other side of this procedure and already home. Lots of positive thoughts and prayers are appreciated for Alexander to have a great procedure, speedy recovery and nothing but good outcomes with any test that are done. I will update the blog after our consult with his surgeon, on what the procedure will consist of. ❤️