3 month photo shoot

His long overdue 3 month shots…enjoy

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Pictures from philly

in and out again

we were readmitted friday night after we were discharged on thurday from chop…it sucked! alex started to throw up all his feeds again…we went in for observation and stayed until sunday. the dr opted to low his rate for the tube feedings and to slow down his feedings by mouth…

home

we finally made it home last night!!! alex is doing ok…he was not able to get his meds this morning so he has not felt great today…

when it rains…

it pours…so hate me for not posting but after you read of all this you may understand. In my last post i mentioned the good news of no bloody stools and no blood infection, well I spoke too soon. On tuesday morning, his stools began testing positive for blood. Monday night, his line clotted off. The I.V. team came at 2am and administered a clot busting medicine which had to sit in the line for 2 hours. At 4am they came back and tried to pull the clot out and were unsucessful. They administered another dose of medication and came back at 6am. At 6am they came back and were again unsucessful. They pulled the line at 11am. On tuesday we also found out that alex has another blood infection. There is a fungus growing in his blood stream as well as in his esophogus and throat. The bacteria in his blood is klebseilla pnemoniae and the fungus is candida albicans. On thursday he had an endoscopy and a colonoscopy to repeat the biopsies that were done at Fairfax. Those results should be back tomorrow. They also sent off stool studies for malabsorbtion which will be back this week. The IPEX blood work was sent off to Cinncinatti, OH and will take 2 to 6 weeks for the results. He is currently getting 10mls of neocate via the tube and 30mls via the bottle every 3 hours.

I should also mention I  had visitors…mom and carolyn came up for the day today. More importantly…grandma came and stayed with me all week. Mom brought her up on tuesday night and she stayed and rode home with mom today. It was so nice just to have someone to  hang out and talk with. She stayed up Alex every night so that I could get some rest. I also got to get out of the hospital. One of our nurses lives in the suburbs and gave me directions to get out there. I went to target and babies-r-us and lenscrafters (my contacts were killing me with all this dry hospital air).

bad day…

Today has been a bad day for alex. In his first feed this morning at 9am he vommited twice and both had mucos in them. He has also started stooling out again. His tubing that is attached to his PICC line came off and his port was open and bleeding for several minutes. He did have infection grow back in both sides of his line and the only good news so far is that there is no blood in his stools and the infection has not reached his blood.

big update

so as you can see below…i have posted alot of new pictures of alex

I did them all today but dated them as the days the pictures were taken. A lot has happened in the last few days and they all seem to have run together so I figured one large update post would do.

Sunday–HAPPY BIRTHDAY GRANNY MAW-MAW!! Alex was put on full strength feeds via the NG tube in his nose. He seems to be doing well with that which is great! However…Alex is running a very high fever (103.6) so they have taken blood cultures from both of his lines and also from his arm. They have started him on two antibiotics (vanc and gent) to block or begin treating any new infections. IV team also came and changed the dressing on his PICC line in his arm because of the bleeding. Tyler and I went to Target today…it was fun but we got SOOO lost.

Saturday–Alex is doing well today. He is very happy to see his grammie and uncle ty. His PICC line is bleeding a lot but they have put a pressure dressing on it and that has seemed to help. We have increased the rate he is receiving his feeds. He is now getting 75mls(2.5ozs) 75% strength feeds at 65mls an hour every 3 hours.

Friday–Alex is doing great!! They have stopped the TPN and he is just getting his lipids(fats) and his formula via the tube.

Thursday–Not much happened today. Alex has thrush in his mouth and esophagus. He is being treated with Niastatin.

Wednesday–Alex had surgery for his PICC line today. It went well and there was no initail bleeding. It did begin bleeding some once we got upstairs and the nurse applied a pressure dressing.