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
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| Surgery day-waiting in the waiting room |
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