Wednesday, May 15, 2013
It never rains but it pours...
Jacob had a rough night and a rough day today. I feel the strong need to ask for more prayer, even though I know many of you are already praying. Thank you so much for that, and please continue to pray. I believe in the power of prayer, and I have have never experienced such an outpouring of love before. The picture above was taken this morning of Jacob sleeping soundly with his two Bravery Bead necklaces. Today we started a new necklace - there is always something to add to this. The Bravery Bead program at SickKids is a great encouragement for children who are old enough to understand it, and I think by the time Jacob is old enough to understand it he will have quite the collection of beads. Some of the procedures represented by these beads are: Bloodwork (or Special Poke as they call it here), CCU admission, Central lines, PICC line, morphine pain control, injection, iv starts, NPO (nothing passes orally), pacemaker, occupational therapy, physio, surgery, tests and scans, TPN, transfusion, transition StepDown, Tube/Catheter/NG and special accomplishment. Jacob has been putting up with quite a lot, and typically smiles his way through most procedures. It's absolutely amazing what this baby can smile through.
Last night it seemed that Jake was taking a turn for the worse - his colour was pale, his oxygen sats were dropping very low and he was extremely irritable. We got very little sleep last night because the nurses and doctors were so concerned about him that there seemed to always be someone in the room. At midnight he had a chest x-ray which showed fluid buildup in the air sacs of his lungs. This combined with his colour and oxygen levels led the doctors to fear that he was entering into congestive heart failure. I thought I was going to throw up when the doctor said those words. Jake immediately had another x-ray and a full echocardiogram to examine his heart's function. At the same time, he also got his PICC line in today - finally! We had been waiting for this line since Monday. It was supposed to be inserted yesterday but the IGT team were afraid to do the procedure on him after 5:00 without all personnel there. This morning with Jake's vitals looking to have taken a turn for the worse the plan was for Jake to go into the IGT operating room for his PICC with a cardiology fellow standing by his bedside at all times. In other words the doctors were so worried about his condition that they were sending a doctor specializing in cardiology to watch Jake have this routine procedure. 5 minutes before Jacob was due in IGT we got the results back from his Echo - his heart function was good, it was not congestive heart failure. The feeling of relief I got from hearing those words made me almost giddy. Jake was able to go into the IGT room for his PICC with only his nurse staying by his bedside. All went well there, although the procedure took longer than normal because of his tiny veins.
So in terms of the NEC diagnosis, the echo was positive, the x ray was positive, blood work has been positive, his bowel sounds good and is soft and he has managed to poop twice (and there was no blood!) Jacob's oxygen levels are still dropping, so he is being helped by the nose oxygen for a few more hours. Also, his colour is not as pink as they want it to be - it's blue/white tinted which is an indicator that he is not getting enough oxygenated blood to his body. For these reasons the doctors are leaning towards extending his time of no food and antibiotics from 1 week to 2 weeks. I had said in my last post that this likely added 2 weeks on to our stay here, but after talking to the nurse practitioner I realize that it's closer to 4 weeks before we can be released to Ronald McDonald House with him. That realization is as hurtful as a punch in the gut would be. But there is nothing I can do about it. :(
Jacob is sleeping off the morphine given to him during his PICC line procedure, and I am absolutely exhausted too. It's time to sign off of here and lie down while I can. Please pray for Jake - he deserves to be well and go home for the first time in his life. Today marks 8 weeks in Ontario for Jon and I, and tomorrow marks 6 weeks since Jacob's birth. Please God, help us get home soon!