Well after Sam's last sudden admission to hospital with his dis-lodged PICC line, our mailbox has been a flurry of envelopes and our phone has been ringing hot with numerous follow-up appointments. Thanks to our fabulous nurse specialist many of the appointments have now been co-ordinated, so we don't have all separate appointments. Our next 2 weeks look a little like this:
March 19: Barium Swallow Test (to determine flow of oral fluids)
March 24: Gastro monthly review
March 29 & 30: Admitted overnight to Starship for CT chest and bronchoscopy.
March ?: Elective surgery to change Sam's PICC line!
After chatting with the surgeon and gastro specialist it was felt that now Sam is much more active and alert, having a PICC in his arm was a concern - it moved once and there is no guarantee that it won't move again, which is potentially very serious. So hopefully in the next couple of weeks Sam will have a new PICC put into his chest. I wish he didn't have to go through more procedures, but we'd rather do an elective rather an emergency procedure.
This week I took Sam to visit his G.P. at our local medical clinic as Sam seems to have developed a fungal infection on his face that was spreading up his forehead and was itchy and uncomfortable and not clearing up with the other potions we had been trying. And thankfully the 2 new potions seem to be doing the trick. Sam also has just finished a different course of anti-biotics for another UTI (Urinary tract infection). It will be interesting to see how his kidneys are, as he's had many UTI's since his last ultrasound 4 months ago. We hope and pray that they have been protected and even miraculously improved!
Sam's last chest x-ray suggests he may have pulmonary hypertension and has been referred back to the cardiology department. When he was born Sam had heart surgery due to large PDA, but he also had 3 other issues with his heart that weren't considered serious and in a 'normal' baby would develop and heal over time..... but it may be that as Sam is anything but 'normal' that these issues are still relevant and affecting bloodflow and therefore his breathing.
But as proven from the photos, Sam continues to be so happy and his eyelashes are growing well and the girls are loving school.... so we plod on. Tomorrow we are celebrating my twin's birthday, so we are having a special family day and going to the Zoo which we're all really looking forward to!.
Thanks for your ongoing interest, love and prayers for our special man and all the best for a great weekend which ever continent you are!