Home for 3 days now

After being gone for 29 days, Alexander is home! 

Alexander has been home for 3 days now and appears to be doing well. Words can't describe how good it feels to be home and to see the smile on Alexander's face. When we arrived home on Thursday afternoon, Alexander played with every toy in the house, with a big smile on his face- it was like it was Christmas Day.

Since my last post, there wasn't much change except for that Alexander's surgery was postponed. His surgeon agreed with his cardiologist that it is best to wait as along as possible; wait for him to get bigger (closer to 27 pounds or more-he's currently 25 pounds), and for him to stay healthy.  His oxygen saturations have improved some since the last post as well. He requires less than 1 liter while sleeping but while active he requires 2-3 liters of oxygen to keep his saturations in the high 60's to low 70's. Activity wise, he seems to be doing great inside the house, but once we go outside, he can only walk for a short period of time before Wes and I need to make him stop or pick him up. Alexander will probably be on oxygen until his Fontan, but we are hoping that as he gets bigger and his heart starts to relax more, that he won't require so much. He has a follow-up clinic appointment on Thursday and we are hoping for good news.

For now, we are slowly adjusting to the new medication routine (6 meds instead of 3), the 50 feet of oxygen tubing following him around the house and getting back into some sort routine that we had over  a month ago. Thank you all for your prayers and positive thoughts. In addition, THANK you to all who have contributed to Alexander's GoFund Me account and provide help to us while Alexander was in the hospital. We never did get a room in the Ronald McDonald House, so the help that was given was very much appreciated! I will write a new blog post after this coming week of therapy and doctor appointments. I hope that it is short and sweet-with nothing but positives. <3 

3 WEEKS!

Today marks the third week Alexander has been in the hospital. The third week of living in the hospital and calling it "home". Three weeks in  and still no answers. Alexander has made the turn for, what seems like, the better! He FINALLY tested negative for Rhinovirus, which means there is no more isolation precautions, which means he can FINALLY walk the hallways and go to the playroom. Monday was the first opportunity for Alexander to finally go for a walk outside of his room. He was LOVING it and LOVED playing in the playroom. He required 2 liters of oxygen while walking but was keeping his saturations above 63.

Yesterday, there was much more walking. He wanted to walk all day but his heart wouldn't let him. By the afternoon of playing and walking up and down the hallways, he required up to 4 liters of oxygen to get his saturations up high enough.There was actually talk of going home tomorrow!! I was so ready for it too! But, that was quickly changed by the surgical team. They said he couldn't go home tomorrow, that they wanted to keep him until Thursday and that pre-op would start tomorrow incase Starnes decides that having the Fontan is the best decision, he would do it Thursday. Well that just didn't work for Wes and I. We told them no on the pre-op and wanted to wait until we discussed with Dr. Starnes (Alexander's surgeon) proceeding. Saying no to pre-op means postponing the surgery. I wasn't ready to stress Alexander out over the pre-op stuff if he wasn't even going to have the surgery. Postponing the operation also allows BCH to send their thoughts over, which sounds like we should hear from them no later than Monday.

There was not a lot that happened today. The day just consisted of keeping our Superman happy and moving. Although he was tired most of the day, he still proceed to play all day with his grandparents and Auntie. Tomorrow, Dr. Starnes  will be meeting with the cardiac team to discuss Alexander and then consult with us about his plan and the next few steps to getting Alexander healthy and out of the hospital. Tomorrow morning is a big day and I'm sure how I feel about it. I know I want answers but will Dr. Starnes be able to provide me with the answers I want to hear?

Our Superman needs your thoughts and prayers to continue to heal, grow, and stay strong so that he can get out of here and experience life outside of the hospital. <3

Time for a Second Opinion

Day 16- Still here and still no answers. The team (cardiology, cardiothoraic surgery) were suppose to meet yesterday to discuss our Superman, however, a few surgeons (including Alexander's) was not in town, so the meeting will happen next Thursday. Since the meeting will be next Thursday, his Fontan will NOT be happening next week, nor will it be happening in the near future. As the days have gone on, I have learned that it would not be a good idea for Alexander to have his fontan surgery now. It is to risky and could cause lots of complications. There is also a rumor that Alexander might not ever be a good candidate for the Fontan (it is all based on his lungs: he needs low pressures in his lungs and healthy lungs) because of the current pressures in his lungs and the fluid that is around his heart. So it is now time for a second opinion. I have contacted Boston Children's Hosptial and I hope that they will get all of Alexander's information early next week and will have some information by the end of the week (hoping).

As of Thursday night, Alexander is back on the CV Acute floor. He is still having a few seizures but only staring spells. He is back on 1.5 liters of oxygen because when he becomes active, he struggles to keep his oxygen saturations in the low 70's. This was not what we wanted and it may tell us that the steroid was working. The steriod that probably contributed to Alexander's seizures on Tuesday.

Alexander was also tested for rhino virus again to see if the isolation can be removed (wearing gowns and mask around him)  and he does. :( This means he has to stay in his room and that we still can't get him walking in the halls to really get a an idea of how long it takes his oxygen levels to drop. Especially Since the rooms only allow him to walk for a short period of time before becoming distracted with something else. So Wes, I and the grandparents continue to be creative with keeping Alexander busy and moving around, so that everyone can get an idea of what his activity levels look like  To top it off, he has an IV in his hand (sometimes both hands) which makes it difficult for him to try to do so much independently-but he's doing as he always does-makes the best of it and figures it out.

So, to wrap up the few days: not much has changed. We are in pause mode waiting for Alexander do improve, waiting for the surgeons to decide what is the next best option, and waiting for BCH to gives us their opinion.  If you'd like to visit Alexander and are healthy, you may! For those of you that want to help with keeping Alexander busy, send me a message with ideas :)

Thank you everyone for your phone calls, text messages, positive thoughts and prayers. We all appreciate it so very much. <3

It's been 2 weeks in the CHLA Bubble

It's been 2 weeks since Alexander had his surgery.  I've been in the CHLA bubble for 14 days, where the outside doesn't stop but your days are consumed with medical reports, alarms beeping, keeping a sick toddler happy, talking with doctors and nurses, making the hospital room your new home, and trying to keep your sanity.

In the last blog post, a plan had been made. The plan is still in effect but isn't working as we had hoped. Alexander was put on a steroid on Sunday night to help with inflammation of his pericardium (the sac surrounding his heart). It's a slight stretch to think he may have some inflammation, but it may be the reason he can't keep his O2 levels up high enough when being active (the steroid will help his heart to relax completely (another issue that is going on). So we said okay. Monday morning we had progress! He was walking around the room and only dropping as low as 73! Much better than 53!!  Monday afternoon he was dropping a little lower (68) but as soon as he stopped walking, his oxygen levels jumped up to 80. So we began to get hopeful but also question: Was it the steroid that was helping? Or the fact that Alexander just needed time? Then that evening, we were told that Alexander was on the schedule for his Fontan next THURSDAY! I was freaking out because there is talk of it being a risky procedure for him because he has such high pressures in his lungs. His cardiologist DOESN"T want him to have the Fontan either. So the surgery is still scheduled but meeting to discuss Alexander will be happening all week.

Which brings me to yesterday- a not so great day. Alexander woke up happy, but by 9:30 am he was irritable, extremely pale, and falling asleep on me. When he woke up, he got sick and proceeded to get sick two more times within an hour. After each episode of getting sick, his body went limp, he stayed extremely pale and his blood pressure was getting lower. You can imagine at this point many many doctors were in and out trying to figure out if it was a drug reaction, a seizure, or a heart issue.  He had an echocardiogram done, a chest x-ray, and a CT scan of his head. All have comes back fine and Alexander was readmitted to the CTICU as of 2 pm yesterday. The consensus now is that he was having seizures that were brought on by the steroid. The steroid that was possibly helping his O2 levels, has now been stopped.

Today we will find out what the next step is. What is the plan? We do know that home is NOT anytime soon and we are trying to get into the Ronald McDonald House so that Wes and I can at least take turns getting a decent night sleep in a bed outside of the bubble.

Alexander needs all of the positive thoughts, prayers, and good vibes he can get. Each day is a question mark for us on what is going to happen and our poor Superman just doesn't understand why he can't go outside and play, why he has to be constantly poked at and touched. :(  

We are praying for good news soon. Thank you for your continued prayers!  <3 

Day 10- Still Here

Day 10 and Alexander is still in the hospital and there hasn't been a lot of change. However, as of yesterday a plan was finally made! Since his oxygen saturations have been all over the place when he is awake, the doctors have decided to keep Alexander on 1.5 liters of oxygen and allow his oxygen saturations to drop to 65, but nothing lower. Then we are to watch his saturations while he is active. With this plan, we've seen his oxygen levels stay around 65-72 when he is walking, with an few drops to 59 when he begins to walk back and forth in the room. When he drops this low, we have sit him down to relax and majority of the time, he doesn't want to sit and instead, wants to keep going! When Alexander does sit down, his oxygen levels bounce back up into the low 80's. 

SO, as long as tonight goes well, we will lower his oxygen amounts to 1 liter tomorrow and see if he can tolerate it at that level. There has been discussion from the cardiology team that they feel comfortable sending Alexander home on 1 liter of oxygen as long as he can tolerate it. So, HOPEFULLY Alexander will be discharged sometime early next week (fingers and toes crossed). We are praying he can tolerate the 1 liter of oxygen and keep his saturations above 70 (my preference-doctor's preference is anything about 65) so that he can come home and continue to heal. <3 

The "F" Word

Yesterday and last night were EXHAUSTING which is why there hasn't been an update. Yesterday, Alexander's cardiologist muttered the word: Fontan. The word we didn't want to hear yet-Fontan. Alexander needs his Fontan, however, the pressures in his lungs are to high for that to happen. To add, the doctors didn't find any real reason (I believe they really thought there was an explanation) for Alexander's desaturations, besides that he needs the fontan and that a few collaterals were coiled.

The procedure itself went well. He came back to the CTICU on oxygen but as of now, he is off.  He  slept most of the afternoon and into the night. He woke up at 10 pm and was awake until 2 am. He then fell asleep but woke up at 5 am because of  vitals, followed by a chest x-ray, and then a blood draw. He never fell back asleep until his nap (which was later that morning).

Today, we moved to CV Acute; No more ICU! Alexander has been looking great and not requiring much oxygen unless he becomes active or angry. He had one low desaturation when he was playing today but only one because he was only given one opportunity. This afternoon, one of the NP's on rounds said Alexander may be discharged tomorrow. I don't see this happening, as we have no idea where his oxygen baseline is and I'm not comfortable going home not knowing. So hopefully tomorrow there is more of plan to work toward getting Alexander home.  Once home, Alexander will need to get bigger because he needs that Fontan and we want him bigger. Bigger means stronger and stronger means shorter stays in the hospital!

Fontan- a surgery we knew was coming but weren't prepared to hear that it needs to happen sooner than later. I don't like the word and I don't like the thought of Alexander  having to be back in the hospital within a short period of time, to do it all over again.

Prayers for our Superman. Praying that he stays strong, keeps fighting to beat CHD and that we get many more answers that we want to hear- soon! <#

Cath lab TODAY

There have been no updates over the past two days because not a whole lot has happened.  Alexander has continued to be on and off of oxygen, primarily when he becomes agitated or active. When he walks around the room, he requires 2-3 liters to keep his oxygen saturations above 70. Yesterday, the doctors decided that Alexander needs to go to the cath lab. While he's in the cath lab,  the cardiologist will check to see if there are any collaterals that need to be coiled, check the pressures in his lungs, and have an ENT put tubes in his ears.

Part of the pre-op procedure yesterday was to swab Alexander's nose and see if he test positive for any illness that could prevent him from going under anesthesia; and Of COURSE he DID test positive for the common cold! We all believe that, because he isn't showing any signs of a cold (except for a slight cough), that  the results are from the cold he had over a month ago (the common cold can stay in your body for 6-8 weeks). Based on the this outcome, the decision on whether he was going to the cath lab or not was not decided until 7 am this morning! So within the next hour, the doctors will be taking Alexander to the cath lab. His procedure will probably be a couple of hours and we hope we get the answers that collaterals were fixed and that his body is NOT ready for the Fontan!

Thank you for all of your prayers and positive thoughts. He really needs them today. We are praying his procedure is successful and that he behaves coming out of anesthesia. I will update as I can. <3

Post Op Day 4- A Better Day

This post will be short and sweet as today was a better day! There isn't a lot to mention but that Alexander was off oxygen majority of the day and required some oxygen when he became upset or doing any sort of activities. Today he played for an hour at a time and only needed .5-1 liter of oxygen. However, when he was walking, he required 3 liters to stay in the low 70's, and the walking was only in his room. Alexander wasn't allowed to walk the halls as it would have resulted in much lower saturation levels. We are hoping we can try tomorrow though. I was also pleased to see that the blood transfusion helped with increasing his oxygen saturations, but not enough to prevent another procedure. Alexander will still need to go to the cath lab. :( The date for the cath hasn't been set but we should know by tomorrow evening. Keep the prayers for our Superman. We pray that he always continues to get stronger everyday. <3

Update of Post Op Day 2 & 3

An update of the past two days: the word HOME was talked about the past two days and now it looks as though home is days away....

Yesterday morning Alexander woke up looking great. He was smiling, eating better, communicating (via sign language) with Wes and I- just overall started to seem like himself. During rounds, the staff mentioned that we would probably be able to go home tomorrow (Saturday) and that the goal was to work on weaning Alexander off of the .5-1 liter of oxygen he was currently on. This was great news!

By mid morning, I mentioned to Alexander's nurse that I wanted to see how he would behave out of bed (he hadn't been out of bed since prior to surgery). I wanted to make sure his balance was good, that his oxygen saturations were looking good, as well as, to see how sore he would be. He was so happy to be out of bed that he started to have desaturations into mid 60's. His nurse quickly suggested that we keep him near the pull out bed and see how he does. As he was playing on the bed, his oxygen saturations began to go up to low-mid 70's. We then decided to see how he would do walking and as he walked toward the door, his oxygen saturations plummeted to the 50's. He was quickly picked up (in scope like fashion as there is no picking up under the arms for 6-8 weeks) and we sat down with him.
Later that afternoon, we tried again and once again, he started out fine but as we walked out of the room and down to the next room, his saturations plummeted to the 50's. His nurse increased his oxygen to 3 and even 4 liters, but that wasn't helping him. :( At that point, there was no more walking. The nurse quickly contacted cardiology to inform them of what was going on. Cardiology made an adjustment to his heart medication and said that the medicine should help with his desaturations and that he's probably taking shallow breaths because he's in pain. Which brings us to today...

During rounds, we discussed the issue of Alexander requiring 3-4 liters of oxygen and still having saturation levels of the 50's when he was being active. I suggested that we get a gym mat to lay on the hospital floor and see how he does scooting around (no crawling until he feels comfortable-he can't fall on his sternum). The staff agreed as well as, stating that it a trip to the catherizatio lab may be a possibility to have some collaterals coiled. They also stated that his blood levels were low (looking slightly anemic) and that another blood transfusion would help his oxygen saturations (he had one blood transfusion on Thursday for the same reason). After rounds,  we attempted to have Alexander walk. He walked around the room for about a minute before heading to the door. By the time he got to the door, his oxygen saturations were in the low 50's. We quickly stopped, put him back into his bed and let him relax. We weren't able to get a gym mat, so instead we used blankets for Alexander to scoot around on. The blankets obviously don't work well, but when he was scooting around, he maintained his oxygen saturations. I then helped him stand up at the pull out bed and he continued to maintain his oxygen levels. He then sat down and started putting his toys in a drawer and his oxygen levels dropped again. So we have all come to realize that Alexander can only engage in an activity for 1-2 minutes before he desats. Great. Just great.



I spoke with his cardiologist this afternoon and it looks like he will be going to the cath lab sometime this week. We are hoping he will get tubes put in his ears too, that way he's only having to deal with anesthesia once. She still suggested to get the blood transfusion and see if that would help his oxygen levels. Getting the blood transfusion meant Alexander needed to have an IV put in. Not good. He screamed as any kid would but after we calmed him down from the stressful situation, we learned that the blood bank needed Alexander's blood type because when they test it (day of surgery they did this), it is only good for 3 days before needing to be retested (safety reasons). So now he needed to be stuck again with a needle! Our poor Superman was so stressed out after everything was done, he just cried. :(

This broke my heart and momma bear will be out tomorrow if more stress is put on him. I hate seeing him stuck in here and not understanding why he is here and not home. Why he isn't playing with his toys, sleeping in his own bed, seeing everyone he normally sees on a regular basis.

We are told we should know something by tomorrow night. Fingers crossed that we do! Prayers for our Superman that he gets through the next few days well and he has no more bumps along his stay. Thank you for all of your support and kind words as we continue to travel down the bumpy heart journey with Alexander. <3

Surgery day-waiting in the waiting room

Post Op-Day 1

The night was rough. Alexander was awake every hour up until 2:30, when he finally slept until 6:30. Since he's still not talking, we had to go off of other signs on how he was feeling. It appeared to be that he was hungry, uncomfortable and in pain. Once he woke up this morning and the morning assessments were done, Alexander seemed pretty comfortable. So comfortable that I even got a smile! :) But it wasn't long after that when he began to get agitated and crying. Since he started to get upset, the nurse removed his catheter, 3 of the 4 iv's, and rectal thermometer. He proceeded to fall asleep after given Morphine and slept for a few hours. When he woke up, he was slightly happy, with a smile here and there. It was then time to take his chest tube out and he was given more morphine to help ease the pain. After the tube came out, he slept for a few more hours. Alexander woke up around 3:30 and seemed a little happy, with a few more smiles. He ate dinner tonight, which was his first meal since Tuesday night and after he ate, he became cranky and fell asleep at 7 pm. By 8:15 he was awake again crying and seeming agitated. He cried for an hour before it was decided morphine should be given because tylenol wasn't acting quick enough and he fell asleep.

I must say that throughout the day, the word "home tomorrow" was discussed. I was quite shocked that this was being discussed as he hadn't eaten much, hasn't gotten out of bed, or played much. I was definitely having my doubts. After his hour long session of crying, I realized that this is the first surgery where Alexander has been awake and trying to move the day after surgery. He is typically intubated for a day or so and then sleeps for another day after being extubated, which means he's had more recovery time while sleeping. Now that he's older and much more aware, he is not liking how he's feeling, but is  unable to tell him what is wrong. :( The morning was rough and the day ended rough. Hopefully the night is better than last and that tomorrow is another good day of recovering, but AWAKE.

Thank you for your continued prayers and positive thoughts. Keep them coming. <3

New Pacemaker & New Leads

It's a been a long day. 4 am wake up to be on the road by 5 am and at CHLA by 6. Alexander was taken back for surgery around 8 am. His surgery last between 2.5-3 hours and went very well! A new pacemaker was replaced and new leads were put in. Everything went very well. He was extubated before arriving to CTICU but upon arriving to CTICU, he was given some pain meds that put him into a deeper sleep than the staff wanted, which resulted in him not exhaling well and was retaining carbon dioxide. The staff thought he was going to need to be re-intubated. They didn't re-administer any pain medications so that he would begin to wake up and breathe better, however that caused a rise in his blood pressure. But his blood pressure began to lower once a few medications were given, and his carbon dioxide levels slowly began to decrease into a normal range (phew!). The rest of the afternoon was just watching Alexander sleep and be by his side when he woke up. He hasn't woken up much today and we are hoping he sleeps through the night, getting much needed rest in order for him to wake up and come off the heavier pain medications.  Thank you to everyone who has been thinking of Alexander and us. Tomorrow is a new day that will hopefully consist of a our Superman wanting to eat, drink, and play!

No News is Good News...Until Now!

For the past 6 months, I have been reminding myself that I needed to update our blog, but I was hesitant as I didn't want to to jinx all of the positivity that was going on. So hopefully you all assumed that no news was good news. :)

For a quick wrap up, we have been busy enjoying life! Between therapy, play dates, family time, and beach visits, Alexander has been busy exploring his environment and learning so much. His therapy sessions are 5 days a week from 9-11 everyday. Two of those days, Alexander is in group therapy (a social group for kids under 3) and Alexander LOVES it! In May, Alexander finally learned to stand up from the center of the room. This was something he hadn't been able to figure out due to the braces on his feet restricting his ankle from moving. Essentially, Alexander had to learn two different ways to stand up (how to stand up with and without shoes on). Since he's learned to stand up, he's been climbing on everything, learning to jump (very close to being successful), and beginning to ride his tricycle!

Alexander's health overall has been okay. His oxygen saturation levels have been staying between 80-90, which is right where everyone wants them and his heart function is good. Last month, we learned that Alexander has fluid in his ears (which could be a reason of why he is still not talking) and that he needs tubes in his ears. In July, we had to take Alexander to the emergency room at CHLA due to having a low heart rate. After a few hours in the emergency room, we were able to go home after the power output from the pacemaker was increased. But we were also told that Alexander's pacemaker lead has an issue at the implant site on his heart and that more power is required from the pacemaker to get his heart to pump. His doctor said he hoped the pacemaker battery would last long enough that lead replacement could occur during his Fontan (the third surgery in a series of three open heart surgeries that he needs). Well last week that all changed.

On Wednesday night, we took Alexander back into the emergency  room at CHLA because his heart was skipping beats. He was admitted for the night and the next day we learned that Alexander needs the leads replaced within the next week.  That date is TOMORROW. Tomorrow at 8 am, Alexander will be undergoing another surgery, to replace the leads and possibly another pacemaker (the battery life is low again because of the power that has been used in order to keep the heart pumping). The recovery in the hospital is typically 1-2 days with this type of surgery, so we can only hope that this is the case but we do know that Alexander isn't a text book child- he always has his own agenda.

So, once again, we ask for your prayers and positive thoughts that our Superman's procedure is simple, with no complications prior to surgery, during surgery, and after surgery, and his recovery is quick.

To end, here are a few photos of what's been going on over the past 6 months. <3

10 days there and 6 days later.

10 days. 10 long days spent in one room. Alexander spent 10 days in the same room, not understanding why he couldn't go out of the room or go outside. It breaks my heart that he had to go through with it, but he needed to be there. While he was there, Alexander lost 2 pounds. :( Alexander was weighing 22 pounds going into the hospital and now he's barley 20 pounds. Some of you may not realize how long it took Alexander to get to that point. Because of his heart working harder, his body burns calories so much faster. This was all because he was sick and the environment he was in. He wasn't eating well and when he did, he wasn't keeping some of that food down. He was requiring oxygen to stay within acceptable levels and being confined to one room, didn't allow him to have the room to move as much as he wanted.

 By Day 7, I was beyond frustrated with everyone and everything.  I wasn't feeling well and just wanted him to get better and get home. Frustrated with the nurses being so hot-handed to increase his oxygen and not allow him to recover from any desaturations. Frustrated that we were both stuck in the same room. It wasn't until a cardiologist on Thursday morning suggested to take him off of oxygen and see what he does. Sure enough, he showed everyone that he didn't need it. The goal to go home was to have a good day and good night. When Saturday morning came and we were told he could go home!

Alexander has been home for 6 days and he is SO HAPPY! He is smiling all of the time, getting into more things than he did before his surgery and illness. He's eating ALL OF THE TIME and on the move everywhere. He's greeting anyone that comes to say hi to him and is just so much happier
 now. So now we play catch up. Catch up on laundry, household chores, bills, therapy, everything! Alexander still requires to be on oxygen, but only 1/4 liter at night. When Alexander takes a nap, he doesn't need oxygen because it is only when he gets into a deep sleep, does his oxygen levels begin to drop. So while napping and sleeping at night, he has his pulse ox attached to his foot, monitoring his levels. The night time picture pretty much consist of our Superman looking cozy with a oxygen line at one end of the bed and his pulse ox line at the other end of bed. In addition, he gets breathing treatments around the clock every 8 hours. All of this is only temporary as he continues to get over this horrible, nasty, virus. Are we sleeping much? Not really, between beeping of his pulse ox (because the sensor isn't getting a good reading) and having to give him his 2 am breathing treatments-we are ready for all of this to be done.

No visiting the Easter Bunny this year but we will be enjoying the time with family and watching him "search" for eggs. Alexander has a few upcoming appointments that are not respiratory or cardiology related and we pray these go well. After these appointments happen, I will update you all on what those appointments were about. Alexander keeps us on our toes all of the time but the 3 of us really need a break-especially Alexander. So keeps those positive thoughts and prayers that his appointments the next few weeks have positive outcomes and don't provide anymore set backs!

                                                    We wish you all a wonderful Easter!