As of 6:20 pm today John is off of oxygen.
Since he got extubated he has been on high flow oxygen and started on 4 liters and 70% flow as well as a nitrix machine that was supporting his lung function. As in Johns true nature since the beginning, he took things at his own pace and was quite sensitive to changes so he was weaned off of the nitirx and oxygen VERY slowly. If they moved him down by more than 5% at a time his sats began to lower and he began breathing much faster. So the doctors took things slowly and he lost the nitirx machine on Friday afternoon and regular flow oxygen by Saturday night. Today they did some test runs on room air without the oxygen and he was desating again so they lowered the oxygen to 1 liter, than .5 liters and only 20 % and then finally turned it off to see if he would tolerate it. and he did. We called tonight and he did great the nurse told us. Hopefully things continue to go as planned and the cannulas will not have to go in again.
Additionally, since Saturday afternoon, John was on step down/ regular floor status, meaning he's getting regular nursing care even though he's still in PSHU. The only reason he stayed in PSHU over the weekend is because they don't transfer patients on the weekend. So he was upstairs on 3 for this weekend. Tomorrow John takes a wagon ride to the second floor they tell me. I can't wait to be there to see him moved.
Finally, I heard the D word this weekend --> DISCHARGE. As I told all the nurses and doctors, this seems much too soon. On Tuesday it will only be 2 weeks since his most complex of the 3 open heart surgeries he has to endure. I know he's doing really well and the doctors know what they are doing and I trust them completely, but we were prepared for 4-5 week recovery. I'm really proud of my baby for being so strong, now I have to be just as strong to take care of him. We had nurses take care of him 24/7 because we weren't able to and I'm starting to question my own abilities. I was assured that the nursing staff on the 2nd floor will teach me everything I need to know on how to take care of my fragile heart baby, but taking him home and taking Emily home are two different things. Sure we were scared to bring her home but for completely different reasons, we were first time parents but of a perfectly healthy little baby, fragile- yes, but still pretty resilient. Anyways, I was also assured that my scared feelings are completely normal and my instinct will take over, John was strong, now I need to be for him. Maybe we will be home by the middle of this week if my JJ continues to do as well as he did this weekend.
Plans for this week are:
John must learn to take the bottle and continue doing what he has been for the last two weeks.
Mom must: calm down, learn to administer 3 types of medication twice a day, catch early signs of cardiac distress, learn to insert the NG tube (most likely), take the mandatory CPR class, sterilize the home, get the car seat ready, go shopping for baby essentials and again CALM DOWN because this is a good thing that we are coming home.
Emily will finally meet her baby brother. I can't wait for that to happen. These 3 weeks have been such a roller coaster, I pray that John continues to do so well and ask that you all continue to pray for him as well.
What an amazingly wonderful update. John is an AMAZING little guy. He has flown through the hardest of the surgeries. I will be praying he takes the bottle as well as he has done everything else. The NG is not that bad, but the bottle is so much easier. You all continue to be in my thoughts and prayers.
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