Last night we got the results from Jake's sedated echo - everything looks good but the left pulmonary artery (LPA) is still narrow and will be a cause for concern in the future. We went to bed feeling hopefully optimistic about being discharged soon. This morning at rounds the doctor reiterated what we had heard the night before, and speculated that Jake might need intervention for his LPA before his next open heart procedure, the Fontan. Then we were told that we were on course for discharge tomorrow. So excited! Over the moon happy to be taking our boy back to Ronald Mcdonald House to wait for his checkup next week at the cardiac clinic. I was in Jake's room laughing with Mom while Jon and Georgia walked around the hospital and then Jon came into the room and said he had just been talking to Jake's SickKids cardiologist. Right away I knew...something was wrong.
The cardiologist had taken another look at Jake's echo pictures and decided that the LPA was too narrow for us to go home without intervention. To verify this, he wanted Jake to have a MRI - but because of Jake's pacemaker we had to settle for a CT scan. Jake was given morphine and taken down right away for the scan. Because of his very small veins Jacob needs a special team to get his IVs in, and this team was unavailable when Jake was down in the CT department, the regular team tried and could not get an IV in so Jake's CT was cancelled for today. Now we are waiting for the morning for the IV and CT scan, and then finally some answers and a plan of action. Unfortunately this means that our discharge for tomorrow is on hold, most likely until at least Monday. It also likely means that Jake's break from daily injections will be short lived - if a stent is put in place in his LPA than he will need the anti-coagulant drug again. My heart bleeds for the daily pain Jake has experienced with that, and that he may now have to experience again.
The title of my last post was "cautiously optimistic"...well this morning we went from cautiously optimistic to completely optimistic to devastated all in the span of a few hours. Now I'm feeling like I've been run over by a truck - completely emotionally and physically drained by the day. My planned post for tonight was a positive one with the highlights of the past two days - Georgia and my Mom arriving, Jake's good report and Jake eating (and enjoying!) cereal for the first time - and instead I find myself struggling to praise God despite the storm. I need to praise God because for the first time in his entire life my baby boy has pink cheeks - pink! Jake's normal colour since birth has been a pale blueish-grey. When I first noticed the colour in his cheeks I thought something was wrong...he's flushed, he must be warm, have a temperature, etc. Then Paula, the nurse practitioner explained the obvious - it's because of Jake's new increased blood flow! Jake's heart is doing half of the work that it had to before his last open heart surgery, and he looks and feels healthier because of it. I am so thankful for that. But still...We had come through the storm, and looked up expecting to see a clear blue sky and instead find that the storm is still raging all around us.
I know you are tired of hearing me ask...and indeed, I am tired of having to ask...but please...continue to pray for Jake in the days ahead.
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