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