Home for a week!

The over due post. It's been 1 week since we've been home and the adjustment has been emotional. One week ago, Alexander was discharged from the hospital as it got to the point of him only being there for observation and test that could be done outpatient.

Alexander seems to be very happy being home. Actually, we all are happy, I'm just a mess though. There is nothing comforting about coming home to see your place in the same condition as it was when the paramedics were here. Nothing to comforting about the fact that anytime Alexander displays something different, I think something is wrong. He has a warm head-I think he's getting a fever. He moves his hand funny and I think he's going to have a seizure. Worry. Worry. Worry. I need a day of relaxation, but I don't see that in the future anytime soon.

Alexander's hand has not returned back to normal.  He gets frustrated and discouraged when engaging in some of his favorite activities. In addition, to struggling with his favorite activities, he is also having a difficult time pulling himself up and crawling. He falls over when he tries to pull himself up or falls down when he begins crawling to fast. It breaks my heart each time I see him try to pick up a ball or put a puzzle piece in place and he can't. :( I try to remind myself about how strong my boy is after going through everything he's ever been through and that helps stop the flowing of tears, but sometimes that just isn't enough.

Alexander is also not eating or drinking very well either. We believe it's one of the side effects of his anti-seizure medicine. His neurologist keeps telling me to give him time for the medicine to adjust. Difficult for me to do given our boy is VERY active and burning calories quickly!

On Friday, we made a trip back down to CHLA. Since Alexander's hand is still not back to norma,  his neurologist suggested it was time for the CT Scan with Angiogram. The results so far have come back normal-yay! However, he still believes that Alexander had small stroke which brought the seizure on. We may not ever know if he did or did not have a stroke unless he has an MRI down (something Alexander can't have done because he has a pacemaker). We still don't know where the fever came from and if any of the events that occurred was triggered from the fever. I'm determined to find out more about that!

So now that we have been home  for a week and adjusting to everything, the worrisome has seemed to lessen. Alexander's therapy session have increased to help with use of his right hand, so hopefully we will see more and more improvements with it.

Praying that things get easier for us, that we get more answers about that horrible event and that more positive outcomes begin to occur for our Superman!

Update on Day 7 & 8 of still being in the Hospital

I can't believe it's been a 8 days since that horrible night.

So here we are, day 8 and still no answers, as it looks like now he may NOT have had a stroke because his arm is starting to improve. A tad bit frustrating that we can't get a clear answer, but a bit reassuring that everyone else wants answers too.

Over the past two days, not a whole lot has happened. Friday morning, Alexander had an ultrasound on his legs to see if he had a blood clot that could have led to his brain. No blood clots! :) A CT Scan was not conducted as Alexander's arm is getting a little better every day. If his arm continues to get better the next few days, then there is a chance he won't need the scan. A Physical Therapist evaluated Alexander on Friday and suggested that an Occupational Therapist evaluate him also and that we begin therapy while we are here. She liked that he was opening and closing his hand but he that he needs to use it more.

What we do know that Alexander's pacemaker will not be getting replaced during this admission. Since he has the time still on his pacemaker, the doctors have all agreed to wait a few more weeks until he is a bit stronger and recovered before operating.

Yesterday we moved to the step down unit, CV Acute-YAY! Alexander did have another seizure yesterday morning, so they increased the dosage of his medication. We also discovered that Alexander does not have much feeling in his fingers. When we pinch them, he doesn't react. :( But if we pinch is hand, wrist and arm, he reacts quicker as we go up his arm. This will be brought up during rounds this morning as I am very concerned.

Today will probably just consist of keeping our active almost 2 year old busy! Not much ever happens on the weekends, so a lot of waiting and a lot of playing! Alexander is eager to move around and play with toys but gets frustrated quickly that he can't play with some because he doesn't want to use his right hand.

Our Superman's journey continues to be slightly bumping, but for now it seems things are slowing down a bit as he's finally feeling like himself, (which is reassuring to Wes and I). We know that Alexander will probably be in the hospital for a few more days and we are hoping/praying we get some answers before going home. Keep those prayers coming! <3

The "S" word but still no Answers.

The word we did not want to EVER hear, we heard today: stroke.

It appears that Alexander had a stroke on Friday night that caused his seizure. We still do not know why he had a stroke but more tests are going to happen. His right hand is not back to normal and the 48 hour EEG monitoring showed that the left side of Alexander's brain is reacting slower than his right. (Quick biology lesson for some: the brain is like a mirror image. The right side of his brain functions the left side of his body and the left side of his brain functions the right side of his body). Alexander's neurologist believes that over time with therapy, Alexander's motor movement in his right hand will be get better since it is only his hand that has been effected by the stroke.

Alexander's pacemaker was interrogated today as well. The results showed that he has 4-6 weeks left of battery life. His EP wants to try and hold off that long since Alexander's body has already been through enough. However, cardiology thinks differently-they believe that maybe it's best to have the pacemaker changed while he is already inpatient. The other factor everyone has to consider first is why the stroke happened? Because putting Alexander into surgery could trigger another stroke if they haven't figured out why.

He did get the chance to walk the halls today and so many of the doctors, nurses, and respiratory therapist that know Alexander, were in the halls cheering for him! He walked down the halls with a smile on his face, waving to everyone! Made me so happy to see him do that! His oxygen saturation levels also continue to be fantastic! The best they've ever been: 85-95! I took a picture because I couldn't believe it! :)

So we all ask these questions: Why did this happen? When will we be going home? What are the next steps? Well, we just don't know. As we end Day 6 in the hospital, I continue to try and  stay as strong as I can, keep my toddler happy, engaged, and thriving at the best that he can while couped up in CTICU.  We are hoping for more answers the next day and a plan for when those questions get answered.

Thanks for the prayers and positive thoughts. Please keep them coming! <3

Exhausting Day 5

 Day 5 in the hospital was an exhausting day for all of us- nurses, myself, and Alexander's grandma. Alexander was irritable all day long. The morning started off okay but before 8 am, Alexander had a seizure happened on and off for 20 min. Alexander was given medicine to stop the seizure, he was given a dose of his new medicine that is trying to not bring on his seizures and a one time dose of another anti-seizure medicine. This one time dose of medicine made our Superman very wobbly. He would try to sign for items that he wanted or reach for things but would fall over. Once the incoordination stopped, Alexander became irritable. He wanted to walk around or crawl around the room but his right arm wasn't study enough to let him crawl nor was I going to let him crawl on the hospital floor. With all the wires hooked up to him (heart rate line, oxygen line, respiratory rate line, EEG line, blood pressure line), he couldn't walk very far. Then he'd request "open" and point to the door. He would get upset when we told him he couldn't go out there. It was so hard to see him so upset and not understand why he couldn't do the things he wanted. 

The EEG is still on him. Yesterday morning, after the 20 minute episode, they discovered that when Alexander stiffens his right hand, he is having a seizure at that moment. The neurology team also learned that even when we don't see any symptoms, Alexander is still having seizures. So they wanted to do another 24 hours of monitoring. We are hoping that the EEG will come off today, that the neurology team was able to get enough information to tell us how often Alexander is having his seizures, which medication will be best to control most of his seizures, and perhaps why they are occurring. I  am not holding my breath if they don't know why his seizures are occurring, but it would be nice so that I'm not constantly looking for answers.

Not much else happened yesterday. If the EEG comes off today, his pacemaker will probably be interrogated and a cranial ultrasound will happen (to see if there is any damage from the seizures-even though 2 CT scans have told us no). Remember Alexander can't have an MRI because of his pacemaker, so we must rely on him to tell us what's going on.

Praying for more answers today, for his seizures to start getting under control and for him to start moving his right hand better. Physical Therapy may be needed with his right hand (Hey Wilma, we might need another session added to Alexander's bi-weekly session), but we will see over the next few days.  Thank you for following us along on our Superman's journey. <3

Not out of the woods yet

Going to be last night, I thought "he's doing so much better".  I woke up this morning and saw that he wasn't. Alexander woke up this morning and appear to be having a seizure. However, it wasn't like his seizure on Friday and instead it just looked like he was sleeping with his eyes open. Once he  got out of bed, he didn't want to extend his right arm or open his hand. He kept it turned in and closed. This all started to worry me and as the morning went on, his hand continued to relax and stiffen and he continued to have a few staring spells. So I requested for Neurology to come look at him and Neurology requested that we set up a video EEG that would monitor him for 24 hours. This means keeping Alexander in his bed or in my lap for most of the day.  Well he didn't like that and neither did I but we made the best of it.

This afternoon he woke up from his nap, had a lunch and then got grumpy. About an hour later, I was holding Alexander and he began to have another seizure. It wasn't as intense as the seizure on Friday but lasted for almost 10 minutes. It happened in front of his nurse who then proceeded to leave the room telling me "I'll be right back"! I FREAKED OUT! I began crying hysterically because there I was reliving the horrible nightmare and our nurse just left me. She came back quickly with a few doctors who kept reassuring me it would be okay and that they were ready to give Alexander medication if it was to last longer than 5 minutes. So we watched him seize because there really isn't much you can do.-SCARY! I hate, hate, hate, hate this!!! He just can not catch a break for longer than 2 months. Something always has to happen!!

So now what? Good questions! I don't know. We wait I suppose and see what the cardiology and neurology teams say. Alexander's pacemaker was not interrogated today as it isn't as important as the EEG and he's here in the hospital, so if something comes up, we will know. I'm praying we get some information about his seizures, that Alexander continues to NOT have ANY setback from these episodes and that questions that are answered, are the news we want to hear. It's an emotional time right now as we just don't know what tomorrow will look like and can only hope that questions get answered and plans get made. Keep those prayers and positive thoughts coming, Alexander needs them more than ever again! <3

Improvement Every Day

Alexander has surprised us all. He is making improvements every day. When the day first starts, I start to worry and then by the end of the day, I realize he has made huge steps toward progress! 

Yesterday morning was an emotional one for me as we were told to "wait" and see how his recovery would go. Alexander's eyes were extremely swollen from all of the fluids he received on Friday night and the heavy sedatives. But prior to really knowing this, I thought- "can he not open his eyes because they are so swollen? or is it neurological related? " He spent more of yesterday getting frustrated because he couldn't see. He would try to feed himself but it was exhausting. He would try to play with something or enjoy his favorite book but would get frustrated because he didn't get the same response from. He wanted to engage in activities but was frustrated that he couldn't, so instead he would just sit and not do anything-which made us think "is he sleeping?".  Seeing hims go through this broke my heart and worried me even more.

 The doctors had begun to worry as well  because his right arm still was not up to baseline; therefore they requested another CT scan and a Spinal Tap to rule out infection. Luckily both of the those results were negative. Then an hour or so after his Spinal tap, Alexander began to open his eyes. He then decided he wanted to walk. So he walked around the room and then down a short hallway outside of his room! Surprised EVERYONE! Our Superman-he does things on his own terms! <3

Today, was a better day. There was no thinking "what if" and there was no "can he or can't he...". Today was a day of Alexander continuing to feel better and showing more improvements. He still gets tired easily and has some puffiness around his eyes, but overall is SO MUCH BETTER! His right arm is still weak, with weakness is grabbing and gripping items. 

In addition, Alexander's  pacemaker was interrogated because he seems to be dropping below the low setting on his pacemaker. The interrogation has told us that Alexander no longer has 3 more months left on his pacemaker and instead has maybe a month. We have learned that when Alexnader's body gets sick, the threshold on his pacemaker works harder, which results in more energy used in his pacemaker. Discussions will be happening to decide when his pacemaker will be replaced (which could be as early as this week). Another interogation will happen tomorrow to hopefully answer some questions. 

So when do we get to go home? We don't know. Doctors want to see more improvemtns with his right hand and have a clear plan on what the next steps are regarding Alexnader's pacemaker. So for now, we wait, keep Alexander happy, and watch him improve every day.  Keep the positive thoughts and prayers coming! <3

A Long 24 hours

Today has been one of the longest and worst 24 hours I've ever had. Alexander got a flu shot yesterday morning (something HIGHLY recommended for CHD kiddos). Yesterday afternoon, Alexander was learning to walk on the grass and have a fabulous time on the swings.

By 7 pm he was Mr. Grumpy and we learned that he had a fever. By 9:30 his fever broke and by 10:45 pm, Alexander's fever was back in full swing which resulted in him shivering. By 11:15, he was blue and right when we hooked him up to his oxygen, he began to seize. In a matter of few short minutes (which didn't feel short at all!), Alexander had 3 seizures in my arms.
One of the WORST experiences is holding your son and thinking you've lost him as he  loses consciousness for a few seconds before beginning to seize again. One of the WORST feelings is not being able to help your child while they seize in your arms. I officially have PTSD with shivering and twitching!

So 911 was called and they took Alexander to Henry Mayo (local hospital). We tried to get him to CHLA but because his seizures weren't stable, they couldn't take him there. Once we arrived to the hospital we learned Alexander's body temp was 105.8! I felt like the WORST mother. How could I let my son get such a high temperature? What did I miss? What if i had... the questions and thought just kept coming to my mind as I watched the nurses and doctors scramble to get Alexander to stop seizing.

Close to 12:30, Alexander had stopped seizing.  Since he finally had stopped seizing, the doctors wanted to protect his airways and intubated him. They then took a chest x-ray and saw that his x-ray looked hazy. The doctors  suctioned him and learned that he had aspirated on vomit while seizing which was resulting in an infection in his lungs. Once he was stable, they did a CT Scan to make sure he had no brain bleeds. That test lucky came back negative!

By 5 am, Alexander and I were transported by helicopter to CHLA, into CTICU. By noon today, he was extubated and by that time Wes and I had been going on 2 hours of sleep. He was finally weened from heavy sedatives by 3 pm and is currently down to less than a half liter of oxygen.

Our concerns now, as we wait for Alexander to wake up more, is if there is any damage from the seizure activity that took so long to stop. He has not moved much of his right arm (during his episodes, his right side was shaking, left side was still). So the possibility of stroke is still on the table. We also want to get a few more questions answered. So it looks like Alexander will be in the hospital until Tuesday (at the earliest).

Again, worst 24 hours ever. I never want to relive it and wish I could just stop thinking about how it happened. I pray that tomorrow is a MUCH better day, and that the following days after that it, just get better-with nothing but positive news.

Alexander needs your positive thoughts and prayers more than ever now. I'm praying he doesn't have any neurological or developmental setbacks from the seizures, that we get many questions answered, and that he continues to be a fighter! Thank you following along his CHD journey. <3

GREAT! GREAT! GREAT!

Happy New Year! Alexander had his cardiology and electrophysiology (EP) appointment today. Wes and I were a bit nervous going into it and after 3 hours of being at CHLA of attempting to keep Alexander calm during his chest x-ray, echocardiogram and the interrogation of his pacemaker, it ended up being a great appointment! His chest x-ray looked GREAT; better than it ever has. His oxygen levels are still staying high (84-86), his echocardiogram looked great AND the results of his pacemaker showed that he has another 6 months with it! No procedures will be needed until summer and we don't have to return for another follow up appointment until the end of February. WOO-HOO!

As much as Alexander hated having the test done by the nurses and technicians (which required us to hold him down), he did well. When he wasn't screaming to not have the test completed, he was wanting to walk throughout the entire cardiac floor. Alexander is very popular on the floor so when nurses and doctors saw him walking, they all couldn't believe how good and happy he looked!

So now that the new year has started, we are back to getting into our routine of doctors appointments and therapy appointments. The adjustment of getting back into a routine with therapy has been a little rough for Alexander but it hasn't slowed him down a bit. In fact, he's all over the place now and eating all of the time! He's becoming a toddler more and more and now it's time to start planning a birthday party! :)

Thank you all for continuing to follow along this windy road with our Superman! I hope to have another update on Alexander's progress in the next few weeks.

Happy New Year!

 It's been a little over a month since my last post and I do apologize for not updating sooner. I know some of you check for updates often so I'm hoping next year I'll get better at updating everyone sooner. However, sometimes no news is good news!

So first good news- Alexander has been off of oxygen since Thanksgiving! It was a bit of a bumpy road with the weaning process (one moment he had oxygen levels at 78 and the next minute his levels were 50!). It was bumpy from the time he was discharged to Thanksgiving, but as we know with Alexander, he just needs time!

Since he's been off of oxygen, his oxygen levels have been between 83-86, the highest he has EVER been. Some family members didn't believe it, so I had to take a picture to prove it. These numbers make Wesley and I VERY happy! It gives us hope that once he has his third of the 3 stage surgeries, his oxygen levels will be close to 100%.

More positive news- On December 15th, Alexander took his first steps! After 9 months of crawling, we now have a walker! and boy is he PROUD to be learning to stand up and walk! It was a great Christmas present to me, to see him take his steps and be so proud to do it. 2 days before Christmas, Alexander got his braces for his feet. The braces are to help him with his balance and reposition his feet. Since he's gotten the braces, he's become MUCH more confident in standing and walking. It won't be long before he's  running around. :)

The holidays have been good to us, as we have been enjoying watching our Superman grow, thrive and learn about everything in life, and be happy about pleasing anyone. I love seeing how he wants to please everyone and show anyone that just because he can't express the words vocally, he knows what he wants, when he wants it, and how to show his emotions toward others. 

On January 8th, Alexander has a cardiology appointment and an appointment with his EP (electrophysiologist aka pacemaker doctor). Wes and I are worried about this appointment because we know the discussion of having another pacemaker put in is soon (as early as February or March).  If you recall, Alexander's battery in his pacemaker had to work harder after his open heart surgery and we were told in November that he had max 6 months left with his current pacemaker. Alexander also has a few other appointments coming up in the next few months that will possibly answer other questions. These appointments will involve a few invasive procedures, ones I'm not ready to think about,  let alone, discuss. As those appointments get closer I'll be ready to talk about them...maybe. 

So as I mentioned in the beginning, no news is good news. Not a whole lot has been going on, up until recently with our boy realizing he can walk and wanting to walk. For now, I think about the positives and the "now". I enjoy every moment I have with our big boy with the Superman heart! I don't take things for granted or let the little petty things bother me that may bother others. 

 Wes and I will continue to  enjoy being a family everyday, learn more about Alexander and continue to teach him about the world around him. We hope that 2015 brings us lots of new positive beginnings with our boy. Thank you for your continuous positive thoughts and prayers. We hope everyone had a very Merry Christmas and that everyone has a safe New Years! <3

We are home!

We have been home since yesterday afternoon. Alexander only needed to stay 1 night in the hospital! Wes and I are so happy to be home. Alexander seems to be pretty happy too! :) 

The cath procedure was successful. His cardiologist plugged a large collateral off of his Superior vena cava and put a stent in his left pulmonary artery. The stent wasn't the most ideal decision but the best. Ballooning open his pulmonary artery would have been better because the stent is now going to make Alexander's next open heart surgery (the Fontan) a little more hectic. Part of the reason the balloon wasn't working is because Alexander's aorta is putting pressure on his pulmonary artery. If the stent wasn't put in, Alexander would have had to go back into surgery, and have a more invasive procedure done that might not fix the problem. 

Alexander is still on oxygen but not as much (1/4 liter instead of a 1/2). However, the plan is to start weening him off the oxygen and hopefully he will be off of it by Thanksgiving. We do have to check in with his cardiologist on Monday and let her know how Alexander is doing. If he's doing okay, she may want to see him then;  if he's doing good, then he will have another appointment with her after Thanksgiving. His cardiologist doesn't trust him and believes that if things don't improve, he may need to go back to the cath lab... So for now, we are thankful to be home and that his procedure went well (so far). We are praying that each day  Alexander will begin to feel better, that his oxygen levels will improve as we begin the weening process, and that we won't need to make another visit to CHLA until after Thanksgiving!! Keep the prayers and positive thoughts coming for our Superman and thank you for following along!  <3 

Procedure time

Today is the day. At 9:30 this morning Alexander goes into the catheterization lab to balloon open a narrowing at the site of his Glenn and coil any collaterals that may have formed. We are praying this is a successful procedure as it eliminates a more invasive procedure and going home on oxygen again! Alexander will be inpatient after this procedure because of his history with coming out of anesthesia.

We are praying all goes well with his procedure and recovery so that we can get back home and start getting into a better routine...I will update the blog when I can. <3

Happy to be home, but...

We've been home for one week and each day that we have been home, Alexander has been feeling better and is much happier! We have even managed to get into some sort of a routine! However, that is all about to change as Alexander must go back to CHLA on Tuesday for another procedure. :(   He will be going back to the catherization lab to fix several things. One is the collaterals that were discovered several days after his surgery. The second is when Alexander was re-admitted last week, they did another echocardiogram on Alexander and discovered that an area where he had his Glenn Procedure, has narrowed. So the first thing that will be done in the cath lab is ballooning open the narrowing at his Glenn site and then fix any and all collaterals that have formed. We are PRAYING that the balloon opens up the narrowing and he won't need any other invasive procedures. We are also PRAYING that having this procedure will improve Alexander's oxygen levels and he won't need to come home on oxygen!

So as I mentioned, we are starting to get back into our routine, but with a few modifications. Alexander is on sternum precaution until December 15th. This means no lifting under the arms or letting him pull to stand. This means we have to scoop Alexander up anytime we need to pick him up (i.e. getting him out of the highchair, his carseat, his crib, etc). To top it off, he has a 50 ft oxygen tube attached to him. So not only are Wes and I having to hold our toddler like an infant, we also have to manage 50 feet of tubing! To say the least, the situation has made Wes and I a bit stressful. We aren't liking it one bit but are managing.

So we may not be liking our current situation, but we are happy to be home and will be much happier at the end of next week, as long as everything goes as planned. Alexander NEEDS this procedure sooner than later, and Wes and I are ready for it to be over with.  We want NO surprises.We want a successful cath procedure for Alexander and a great recovery with no more surprises or bumps in the road!

Thank you all for your continuing thoughts and prayers. Our Superman needs them, especially on Tuesday!

Back to the hospital we go.

So my blog post was originally going to be about the transition at home with Alexander being on oxygen and his recovery, but I'll save that for another day. Instead, I shall fast forward to Sunday afternoon when Alexander woke up from his nap. He woke up happy and while he was having a snack, he began to get irritable. As he was getting irritable, his oxygen levels began to drop and we discovered he had a fever of 102.6! We immediately called the cardiology unit at CHLA. They said to continue giving him Tylenol every 4 hours and see if his oxygen saturations come back up when he begins to calm down. 3 hours later-Alexander had finally calmed down and his oxygen saturations were barely hanging above 70 on 1 liter of oxygen (we were instructed to be on half a liter of oxygen upon being discharged on Wednesday).

At 11:30 pm, Alexander woke us up crying. He didn't stop
crying. Nothing was working to get him to stop crying and then he began to shiver. By midnight, I suggested to Wes that we probably needed to call 911 and so he did. The paramedics were at the house within 5 minutes, to see our blueish-greyish boy crying with oxygen saturations in low 60's and another fever of 100.6. We told the paramedics that we needed to go to CHLA because our local hospital wasn't familiar with Alexander's Congenital Heart Defect. Alexander and I were then taken by Ambulance to a dirt lot where the FD helicopter transported us to Children's Hospital. When we got to CHLA, Alexander's oxygen saturations were still in the 60's and he still had a low grade fever. The staff in the emergency department took blood samples, swabbed his nose, took a few chest x-rays, and a urine sample. By 3 am, Alexander, Wes, and I finally got to sleep longer than an hour. At 5 am, we were told Alexander would be admitted (which we figured) and was taken to the CV Acute (the floor we were discharged from 4 days prior).

So still here and it's Wednesday. All of Alexander's test came back negative. However, his white blood cell count came back a little high and he has fluid on his right lung, so the doctors think he may have atypical pneumonia. One of his current medications is a diuretic, so they increased the frequency of that medication to help get the fluid off. They also did another echocardiogram and we have now learned that where he had his Glenn procedure done, a section of it has narrowed. This wasn't there on the echo that was done last week, which means the talk of Alexander going to the catheterization lab sooner than later, just got real.

Since being admitted, Alexander has been looking good and in such high spirits. You wouldn't think he was "sick". He's still stressing out when the nursing staff come in to assess him, but not as often. There are some staff he's okay with and some he doesn't want them to touch him. He doesn't take his eye off of anyone that walks through the door, scared they might come poke him. So to all of our nursing friends- don't ever come over in your scrubs to visit Alexander.;)

 Some good news, Alexander hasn't had a fever since Monday night! But his oxygen saturations are still lower and he's requiring more oxygen then when we went home the first time. So now we continue to wait and see what the next step will be, to stay strong, keep Alexander occupied while cooped up in the hospital room, and pray that things start to look even better and we get more answers that we WANT to hear. Thank you everyone for your continued support, positive thoughts, and prayers! <3