Christmas this year was one we will always remember. Lucas was in the hospital like he has been most of his life. Our Social worker gave us a night at a hotel with in walking distance to the hospital. We all stayed there Christmas Eve (except of course Lucas). We were getting tried of the Rainbow Cafe, so the boys enjoyed their fav steak and ribs at Chiles.
Christmas Eve morning Santa brought some things for the boys to our tiny hotel room. Then we ventured to the hospital. I was in a bad mood and very depressed. When we walked in Lucas's room his TPN was turned off and no one knew why. The communication was not the greatest. And I was upset to be there. Luckily for family they made their way to come spend time with us. We reserved the conference room and it turned out pretty nice. We had a lot of family come it was great to have the family support.
Lucas has been having problems with his PICC line so the surgeon scheduled him for a broviac to be surgically placed in his chest Friday. But she didn't want to pull his PICC line out if she could avoid it because each central line is so vital to him. After it would be placed she said we could be discharged the same day to avoid any possible virus's in the hospital. Any way at the end of the party Lucas's nurse came to check on him. She notified us that if his PICC line would draw blood at 5:30 we could we discharged (on Christmas). Lucky for us it did! But once again he had a low fever when she took his vitals. The Doctors said it was border line but we should be okay to go. We had been waiting for a storm all day and at about 8:00 it hit. At 9:00 pm with 3 new inches of snow on the ground and a huge blizzard we were finally discharged. It took us a long time to get home but we made it!
We finished Christmas at home by opening presents from Santa at 11:00 at night. The boys had a blast and Isaac was very funny. We were up late and very tired but we were together. The kids were spoiled rotten by family and friends.
It is nice to be home but Lucas is very time consuming. He has 4 IV pumps and one feeding pump. As well as his ostomy care, G tube care, changing dressings, calculating G tube out put and replacing with IV fluid, NJ tube care, meds, IV antibiotics, TPN stuff, lipids, and tube feedings. But it is so worth it to see his precious smile. He loves being at home, and so do I!
Lucas 1st Christmas
Family Christmas Party At PCMC
Christmas Eve morning Santa brought some things for the boys to our tiny hotel room. Then we ventured to the hospital. I was in a bad mood and very depressed. When we walked in Lucas's room his TPN was turned off and no one knew why. The communication was not the greatest. And I was upset to be there. Luckily for family they made their way to come spend time with us. We reserved the conference room and it turned out pretty nice. We had a lot of family come it was great to have the family support.
Lucas has been having problems with his PICC line so the surgeon scheduled him for a broviac to be surgically placed in his chest Friday. But she didn't want to pull his PICC line out if she could avoid it because each central line is so vital to him. After it would be placed she said we could be discharged the same day to avoid any possible virus's in the hospital. Any way at the end of the party Lucas's nurse came to check on him. She notified us that if his PICC line would draw blood at 5:30 we could we discharged (on Christmas). Lucky for us it did! But once again he had a low fever when she took his vitals. The Doctors said it was border line but we should be okay to go. We had been waiting for a storm all day and at about 8:00 it hit. At 9:00 pm with 3 new inches of snow on the ground and a huge blizzard we were finally discharged. It took us a long time to get home but we made it!
We finished Christmas at home by opening presents from Santa at 11:00 at night. The boys had a blast and Isaac was very funny. We were up late and very tired but we were together. The kids were spoiled rotten by family and friends.
It is nice to be home but Lucas is very time consuming. He has 4 IV pumps and one feeding pump. As well as his ostomy care, G tube care, changing dressings, calculating G tube out put and replacing with IV fluid, NJ tube care, meds, IV antibiotics, TPN stuff, lipids, and tube feedings. But it is so worth it to see his precious smile. He loves being at home, and so do I!
Lucas 1st Christmas
Family Christmas Party At PCMC
Having Christmas At Home About 11:30pm
Our Miracle For Christmas!
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5 comments:
I am so happy for your little family!!! See you on New Years Day!!!
I can't tell you how excited and happy I am for you guys! You brought a tear to my eyes. . .I'm so glad that you got your miracle for Christmas, even though it wasn't as timely as all had hoped. We love you guys!!!
I am so glad Lucas is home! Although it started out rough, it looks like you had a good Christmas! It looked like quite the party in the conference room, that is great that so many people could go up there to spend time with you guys! Also, those pics of Lucas with Santa are priceless! I hope everything goes good for you guys at home.
Al, I can't believe you remembered Sugar!!!! I almost forgot! Good old family dogs...remember good old Killer, with his Grandpa Dick teeth?
oohhh, i'm so glad he's home!!! i'm so glad your family was able to be with you at the hospital! that is a very merry Christmas!!! happy new year's you guys! see you soon!
so glad you are finally home!
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