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.