It's the little things that make us say 'Hmmm'

So Day 3 and still in the hospital. The whole plan of staying over night was a good plan and we were all hopeful; but when cultures come back showing that you have Enterovirus and Rhino Virus (common colds) all of that goes out the window!

Yesterday morning we learned that Alexander is sick and that colds get better before they get worse. We are on Day 2 of this cold and have seen his oxygen saturations go from 83 percent to 53 percent within a few seconds! If he gets out of bed, they plummet. If he moves from one end of the bed to the other, they plummet. If he stays in bed and coughs, they plummet. If he is breathing through his mouth while sitting watching tv, they plummet.

We haven't even reached the worst of it: if that happens. So, I'm sure you're thinking the same as the rest of us..."hmm-perhaps staying in the hospital and riding the cold out or until Alexander is back to feeling more like himself, would be best."  Then there are the fevers. Why the fevers? What is his body trying to fight off if he only has a virual infection? "hmm...we wonder". Alexander's been getting 1-2 fevers the last few days as well. No one likes fevers. Alexander gets the chills, his heart rate increases and his oxygen levels drop. We are all hoping that the fevers are just post-op recovery and just his body trying to fight off the viral infection. If he continues to get the fevers and they begin to get higher (higher than 100.3), then they will need to do a blood test and see if there is another infection going on.

So for now, we hang out and give Alexander all of the rest he needs. Wes and I, and the doctors, prefer to be here instead of home. I don't want to be home if this cold gets worse.

We are not sure when Alexander caught this cold- he may have already had it but wasn't showing symptoms until Monday night. This is a reason why Alexander must try and stay healthy and why I expressed in my post a few days ago, the importance of staying home when you are sick. The little things we can fight off easily, are not so easy for our Superman. Thank you for all of your prayers and positive thoughts. Our boy still needs them. <3

Keeping the nurses on their toes

Alexander's cath went well. His cardiologist was able to get information for UNOS the results have informed us that everything appears the same as his last Cath (September 2015); therefore, transplant is still the best route for him.

Upon arriving to the recovery room, the staff gave Alexander a medication to help him rest, as he was very agitated with oxygen saturations dropping into the 30's. Once the medication was turned off, 45 minutes Alexander did it again-becoming agitated and saturations dropping to the low 50"s. 6-7 staff members quickly surrounded Alexander wondering which next step to take, while Wes and I stayed calm. This is Alexander. Always having a difficult time keeping his oxygen saturations up when recovering from a procedure. His cardiologist even warned the staff in the recovery unit. Since he looked so good they all questioned her-asking her "why is he being admitted?". An hour later they realized why.

Once out of recovery and into CV Acute, we learned Alexander had a low fever (99.5). He then fell asleep and after waking up, his temperature was 103.0! Tynenol was given, cold compresses were used and 30 minutes, his fever was down to 99.4. He now has NO fever! Let's hope it stays that way and that he continues to feel better through the night. Home tomorrow. We hope, we hope, we hope!

Keep the prayers and positive thoughts coming. Prayers for a smooth night, for most of us to get some decent sleep and that Alexander can go home tomorrow.

The Past, Present, & Future

We love the zoo!

It is finally time to update everyone on Alexander. Summer has come and gone, the school year has begun, and Halloween is right around the corner. Alexander is doing well. His energy level is getting better every day, he's learning so much every minute and continuing to thrive over all.

Next Saturday, October 15th is the American Heart Association heart walk in Santa Clarita. Wes and I will be walking in honor of Alexander. If you live nearby and want to join us, click on the link.  If you can't or won't be joining us but want to contribute by donation, click on the link. :)

Santa Clarita Heart Walk-October 15th-CLICK HERE

First day on the School Bus :)

Currently, Alexander is attending preschool 4 days a week, for 2.5 hours each day. He is riding the school bus to school but because is only on 1 tank of oxygen at school, which last 3 hours (because he is still requiring 3 liters per minute), he does not take the school bus home. He has his good days and bad days-but overall, he seems to be enjoying it.  He never wants to go home when I pick him up. :) When he's not in school, he's in therapy (speech, occupational, or physical therapy). He just had his follow up cardiology appointment and there is now a descion on what the future holds.

A few months ago, we learned that it would not be in the best interest for Alexander to have the Fontan (the third surgery of the series). If he were to have it, his quality and quantity of life would not be good. This is due to pulmonary pressures coming from the heart going to the lungs being high and his heart not pumping well. As of July, Alexander has been listed for a new heart. He is considered a status 2, as he's not 'critical'. So we wait. We do not know how long this wait will be. It could me days, weeks, months, or years. We hope that if it's years, Alexander can be weaned off of the his oxygen and wait for a new heart without it (how that would make things so much more simpler). We were told that his name has come up when hearts were available but he was just not a good match. This decision is a positive and not-so positive. Positive being he will have a new full functioning heart with all 4 chamers. No more pace maker, no more oxygen. The not-so-great news: he will be on anti-rejection meds for the rest of his life. If he were to miss a day or two, his body could begin to reject his heart-it is that quick. He also needs to try and stay healthy; getting sick makes his body and heart to have to work harder, so we will have to continue to be cautious with germs.

Signing Time Moment with Rachel & Hopkins :)

During his recent cardiology visit, we learned that Alexander will be returning to the Cath lab TOMORROW. You are now probably thinking:
"Wait. She said he was doing fine." and he is doing fine; this Cath is just routine for transplant patients. United Network of Organ Sharing (UNOS) requires updates on the organ's function every year. As much as NONE of us want him to go back into the Cath lab- it just has to happen. His cardiologist knows that when Alexander's heart is touched in any way, he takes two steps backward. Her plan tomorrow will be to get the numbers that UNOS needs and then get out. She is not going to do any sort of intervention, unless there is something that must be fixed (which is probably not the case).

As we head into flu season, I want to remind you all that if you or your children are sick-stay home.  A little runny nose or cough could be nothing to you but that person you walked passed in the mall or are standing behind in the check out line, it might mean something to them.

Please continue to pray for our Superman. His procedure is first case tomorrow morning (7 am) and he will be staying overnight for observation. Please pray or send positive thoughts that Alexander's Cath is uneventful, that all goes well after the procedure and that he can come home on Tuesday. I will update you all tomorrow on how his procedure goes. Thank you for continuing to follow us along out Superman's heart journey. <3

Just another day at Target

Our days after his dental surgery

Alexander has been home since Thursday of last week. His procedure went well, his recovering from anesthesia was good and the surgeon did a LOT of work in his mouth. :(  Before I tell you what they did, I must first remind you that he is on 8 different medications. 6 of them are liquid and 3 of them are in a sugary syrup, with one of those  syrup medications he gets every 6 hours (that means he gets the medication when he's sleeping every night).

Alexander had two teeth extracted, 4 crowns, 6 baby root canals, and 6 white fillings!! :( :( :(

 With all that work he had done, let me just tell you that our Superman doesn't drink any juice, hardly eats anything sweet, and enjoys brushing his teeth (they are brushed anywhere from 3-5 times a day). It still didn't matter. :(

 I feel like a horrible parent seeing him with all the work done.  I try to remind myself that I've been doing everything correctly and that hopes with a few adjustments on medications (going to try a different brand), that maybe we can slow down the cavities

Alexander wasn't able to use a straw for several days so his drinking from an open cup got really good, but it made it hard when we were out and about. He was sore until the weekend, but appears to be doing better now. He has a follow up appointment next week.


Since we've been home, he's gone back to summer school (which ends this week) and resumed his therapies. School will be over for a month and so now it is time for Alexander to enjoy summer. More swimming, more trips to the zoo, and just more outdoor adventures that he is capable of doing-all while staying healthy! He has a cardiology follow up next month, in which we will have a better idea of what is ahead. Thank you all for continuing to follow us along our Superman's journey. <3

A picture is worth a 1,000 words...and a surgery...

February

 

March

April

May 

June

 

Over the past 5 months, Alexander has been busy being an active 3 year old boy! Tomorrow morning we head to CHLA for Alexander's dental surgery appointment. He has cavtiites that need to be filled from the medications that he takes. Because he has a heart condition, he requires a cardiac anesthesiologist to monitor him, which means he has to go to CHLA for the filling. While he is under anesthesia, they will fill the cavities and take x-rays. We are praying no teeth will be pulled and that he does fine coming out of anesthesia. He will be staying over night for observation too. We once again, ask for your prayers for a smooth and easy procedure tomorrow and that he comes home Thursday.  I'll be sure to post more after the procedure. <3

New Year, New Post.

Warning. This is a long post.

First off. Happy New Year! The holidays were busy for us and have come and gone. Alexander continues to take one day at a time and constantly showing us to not let our guard down.

Thanksgiving, Wes and I learned that Alexander requires 3 liters continuously when awake (we thought 2-2.5 was enough). We learned this the hard way, as in, we were 2 hours away from home and he wasn't feeling 100%. What was suppose to have been a 4 day stay with some family, turned into an over night trip. We had to come home the day after Thanksgiving because the portable concentrator he was using,  was not proving enough oxygen for him. :(

 Christmas, Alexander caught a little stomach bug, that resulted in him vomitting on Christmas and the day after Christmas.

Then on January 16th, Alexander woke up not seeming like himself. My motherly instinct knew that something was just not right, but everything appeared fine. His heart rate and oxygen satuarations were normal, he had no fever, or a cold. He wasn't interested in eating either. I knew something just was going on with him. I informed my mom about it, as it was a day she was coming to babysit while I went to work. Then at noon, I got a call from my mom that he had gotten sick while eating lunch. I had just finished up with a doctors appointment and had a few hours before I needed to go to work. When I returned home, he had just fallen asleep for his nap. My mom reported that he ate a little before looking tired and was ready for his nap. He slept for 5 minutes before waking up, smiling at me (he must have heard me come into his room). I stayed with him for a few minutes to see if he'd go back to sleep. He didn't. He then became a little agitated and whining. The whining increased and he began to show signs that he was going to vomit. We made it 2 feet from the bathroom before he got sick. So now he had gotten sick twice within 1.5 hours. Time to call cardiology and his pediatrician.

Alexander's pediatrician said keep him hydrated and posted on how he was doing. Cardiology said to not give him his 2 diuretics that night, keep him hydrated by offering him about an ounce  of water every hour. She was very concerned because vomiting was the only thing going on; no fever or diarrhea. (She was started to think heart failure, as was I!). Fast forward to 2 hours later, he had gotten sick 3 more times. Cardiology was now thinking he needed to be admitted to the hospital due to dehydration. While dealing with a sick child, I had an appliance repair man coming to our house to have our dryer looked at. As he was ringing the door bell, Alexander began to vomit. The poor guy witnessed Alexander getting sick because our kitchen window looks out to the front door. My mom answered the door, warning him of the oxygen line he needed to step over in order to get into the laundry room, which is located next to the kitchen. As she's putting our hyper, happy, Jack Russell outside, I'm yelling at Alexander "breath, breath, breath" (his coloring was not good). He finally took a breath and vomited again. The repair guy asked what was wrong, I told him I believed that the motor was going out. He tried to start it, and I yelled "that's the noise", as I was trying to calm Alexander down and clean him up. He agreed, the motor was going out, gave me my receipt, told me that part would come in about 7-10 days and walked out! Hilarious at the time, as my mom and I needed a good laugh. Talk about timing!

So once he left, I realized that Alexander had begun to get sick every 15 minutes. He wasn't keeping any fluids down and was near passing out when he did vomit. How was I going to make the 45 minute drive to CHLA, with a child getting sick every 15 minutes? I decided to call 911. I did not want to go to the nearest hospital, as his heart condition is so complicated, that most doctors just aren't sure of how to handle it-especially when they see his sats aren't at 100%.

The paramedics arrived and said he had a fever (101.0). This was surprising to me because he didn't feel that warm and had been snuggled up with me after each event. The paramedics also informed that they couldn't take Alexander to CHLA because his breathing and heart rate were fine. So to the nearest hospital we went. 2 hours, with 3 attempts later  Alexander got IV fluids. 4 hours after that, he was transpotrted by ambulance to CHLA.

Thursday- Alexander slept a lot, as I did too, while Wes went to work and my mom came back down to the hospital to keep me company. By Thursday night, I wasn't feeling well and was driven back home, because I had come down with the same stomach bug as Alexander! While I was home, I learned my mom had gotten the stomach bug and then by Friday morning, Wes had gotten it! HORRIBLE STUFF! Thank GOODNESS for my mother in-law. She was so great to stay with Alexander on Friday and Saturday, and never got the bug. Alexander was discharged on Saturday night, January 20th. The anniversary date to the horrible night of Alexander's seizures and stroke. Before he was discharged, we learned that Alexander had tested positive for Norovirus and C-Diff. Both nasty, nasty, bugs.

So that was November, December, and January. We are now in February, preparing for CHD awareness week (2/8-2/12), our Superman's birthday (2/11), his momma's birthday (2/22), and Alexander starting preschool! He will be attending an SDC (Special Day Class) for children with otheropedic impairment and health issues. There are currently 4 kids in his class and he will be attending school 2-3 times a week for no more than 2 hours at a time. We are worried about germs with him but want him to get that academics that he striving for.

Given everything, he's doing fine. He has his ups and downs and behavorily, he's acting like a 2.5 year old would. He doesn't like the word "no", or "not now", wants to sing and play the samething 20 times a day, and is being picky with what he wants to eat. He's signing up a storm too! He's begun to put 2-4 signs together and when he doesn't know the sign for something he wants, he will describe it by signing the color. For example, one day he wanted a particular type of cracker that was in a blue box so he signed "blue cracker".

We are very excited for him to be starting school soon, a little worried about him getting sick, and always on alert with him. We pray that the only "excitement" for this month is school and birthdays! He's had many follow up doctor appointments (3 in 2 weeks, and 3 next week), and we are hoping  those all continue to give us positive news. One of those appointments is Cardiology.

I apologize for this post taking so long to be written but it has been a busy couple of months. I'm hoping that things begin to slow down, praying that Alexander continues to stay strong and healthy, that we have a few quite months, and that he does fantastic at school. Thanks for following us and Thank you to everyone that contributed to "Wear Red Day" for Heart Awareness Month on February 5th; wearing red in honor of Alexander and fellow heart warriors. <3

Happy!

Update time- Yes, as usual, my posts are a bit later than I state, but time escapes me and next thing I know, family members are reminding me to update everyone on Alexander.

Alexander is happy! Healthwise, there hasn't been much of a change but overall he is happy.  Alexander's need for oxygen support  hasn't been  changed either.  He is hardly on any while he sleeps but is still requiring 2.5-3 liters when he's active. His cardiologist hasn't given us any ideas on when he may be off of the oxygen or when his next cath will be. Boston Children's Hospital did get back to us and what they suggested was nothing different than what CHLA had said. So for now we just continue to be blessed to have Alexander home and happy!

On Wednesday, Alexander was finally off of the 8 week sternum precaution. We are now able to pick him up under his arms, allow him to climb more, and just be a toddler. It had been a little bit more hectic with not being able to to lift him under the arms (picture yourself trying to put him in his carseat, booster seat, shopping cart. You don't realize how difficult it is, until you have to lift your 25 pound son up like an infant, while handling his oxygen line)...

Now that things have some what settled down, Alexander's appetite has returned and all of his therapies (Speech, OT, PT, and Early Intervention) have begun. Since we know he needs his next surgery sooner than planned, we have begun to provide him with high calorie meals. High calorie snacks appear to be the most difficult food item to provide, so if you have any great high calorie snack recipes or ideas-send them my way. :) 

Christopher Robin :)

Halloween has come and gone, and while he couldn't be out for to long, he did trick or treat to a few houses. After the second house, Alexander began to get the idea of what Trick or Treating was all about. Everyday he is becoming more of an independent boy and wanting to help out around the house. He enjoys helping with the laundry, sweeping the floors, helping with putting in a trash bag, getting his utensils when needed, and his favorite thing to do is feed Stella! :)

He had a follow up with his ENT last week regarding the tubes that were placed in his ears 5 weeks ago. The blood from the procedure of putting his tubes in, clotted around his ear tubes. We are now having to put peroxide in his ear to help clear that up. We haven't noticed much of a change with his hearing, however, he is trying to elicit more sounds and has been signing more often, pairing signs together and beginning to form sentences via sign.

With Alexander recovering of surgery, dealing with his 50 foot tubing of oxygen, having flu season among us, and trying to keep Alexander healthy, we haven't done a whole lot. He really can't afford to get sick, as it could send him straight back to the hospital, with him being where he was right after surgery. However, I imagine things will begin to get busy with the holidays right around the corner (seriously, where did time go?), but I have ever intention to update after Thanksgiving- hoping he's thriving more, continuing to be so happy, and being the mischievous toddler that he is starting to become. Please continue to send positive thoughts and prayers our way. Alexander needs to stay out of the hospital to continue to stay healthy, grow, and thrive before his next battle. Thank you for following along our Superman's journey. <3