Iv port adventures

Lily was fitted with an Iv port on Nov 1st. Here is what it looks like:





She needed it for her ivig every three weeks and for her frequent IVs for dehydration. Also her veins are oddly deep and they roll and collapse. So every blood draw, every stick required her being held down for 45 min being stuck in every vein they could find until they found one that wouldn't collapse. It was traumatic for everyone involved.  The last iv she was given before her port surgery was the worst. I watched as three nurses held her down and stuck her over and over and over and over. she screamed and fought with every ounce of her strength. she had just started saying mama that week and screamed "mama mama" until she lost her voice. After they were done i picked her up and she just sunk into my arms, and stared at nothing. She barely took notice of toys, of people passing. She just stared. For a day and a half when she wasn't sleeping she was staring into nothing. Any question we had about weather the port  was a good idea had been settled. So she had the surgery. She was already going under for a g tube and a muscle biopsy so adding a port wasn't too big of a deal.However the port comes with complications. For every fever she has to be hospitalized for at least 48 hours to make sure the port isn't sending an infection into her heart.

 Th red arrow is pointing to the bump of the port that is visible just under the skin the purple arrow is pointing to the catheter that runs up her vein. This was taken a few hours after surgery.

 My finger is pointing to what her port looks like now that the swelling is gone.

 in order to place it they also had to put a small slit in her neck.

this is what the port looks like when its accessed. they use a special 1/2 inch Huber non boring needle.

  And then there was the unexpected complication. She had a staph infection that wouldn't go away. On DEC. 8th she spiked a high fever. They admitted her for iv antibiotics and to be monitored. with in 12 hours her fever was gone...
I had noticed the few weeks previous she kept grabbing her chest and moaning. She was more fussy than normal and would sometimes even fall over screaming and grabbing her chest. I told the ER doc and they didn't care. I told the admitting doc, he didn't care. I told her first day nurse...she didn't care. We finally got an awesome nurse the day they were gonna release Lily from the hospital. I told her and she said she had noticed it earlier when she was watching her so i could take a bathroom break. Then Lily did it again in front of her.

You can see the pain in her eyes in the pic as she holds her chest. The Nurse called the resident doc (who is AWESOME! she hasn't been a doctor long enough to get jaded and stop caring as much...). She ordered an x-ray. The x-ray showed the cath from the port had slipped far into her heart. She needed surgery. They booked the OR for the next possible opening. The moved us down to the cardiac ward to monitor her heart. They said they wouldn't know if any damage had been done until they got in there. There was a possibility it had fused to her heart. We asked a friend to come that night to help give her a blessing. The blessing she was given brought so much peace. The spirit was so strong. I knew she'd be fine and things would go smoothly. Early the next morning they sent her off to surgery. It went smoothly and quickly. The surgeon was able to go in through the old slit in her neck and correct it from there. She was monitored for another 24 hours to make sure her heart was ok and then sent home. We were so blessed. It could have been so so much worse. at the very least, the surgeon said he was sure she would need a whole new port. He said he didn't know how she got so "lucky". It wasn't Luck, it was the blessing. The Lord heard our prayers and granted peace and healing. I give Thanks to My Heavenly Father for blessing her that day and every day. He knows our desires and answers our prayers. I am so so so grateful!