Sorry it has been a few days since my last post. I always say, "If I don't post then that means things are the same. No news is Good news!" Well that is basically the case.
So Thursday when we changed her wound dressing it had a wretched smell. I was immediately concerned. Lisa, our nurse, was here and she said not to worry the wound looked really good. When Brian got home I told him this and he jumped up and got the wound vac papers. They have a whole poster dedicated to "safety information." One of the signs for infection was "bad" smell coming from the wound. So on Friday morning I called Dr. Shilyanski's office. Well was I shocked when the doctor himself andwered the phone. He asked what I wanted to do. I knew I didn't want to take her all the way up there. I asked if he could give her antibodics "just in case." He was leary and wanted us to take her to our local peditricain for a culture of the wound. So that is what we did. We will not know the results until Sunday or Monday. But at least it is in the process. He also ordered another dressing. We got it later Friday evening and it is JUST A SPONGE! I'm not wanting to put it on until I know exactly how to do it. Then you have to wet it to get it off. I really like and have grown used to this large bandage we are using. Her wound is healing nicely. So now we wait. The good news is that she hasn't had a fever. So more frequent dressing changes IS the order. Fine by me but let's not tell Ava. She hates dressing changes.
She is everywhere this child. Thursday morning she tripped over her IV pole and landed in the metal legs. Yea she got a small cut on her forehead. My poor baby! She cried for about one minute and then off my lap she went. She wants to be normal again but it is so hard while she is getting her TPN. We tried to put her pump and nutrician in a small back pack this morning but she gets top heavy and looses her balance. Lexis was helping her get her pants on and over she went. I did start to worry because she cried and cried. I asked her what hurt and she struck up her big toe. I had to laughed. "Your toe?" and we all started laughing her too!
We put up our Christmas tree Sunday night. Ava loves it. She hung her ornaments and had so much fun. I distanced myself as though I'm at the top of the room. I silently prayed to myself, "God you are too good to me. I am the luckiest Mother in the world.Thank you for blessing me with such a wonderful family."
I don't speak of Brian very often because, well he's the dad and what do they do except to go make all the money. I have an incredible husband and the girls love their father. I got Ava out of her bed this morning and she crawled into our bed. She started searching for daddy. "Sis daddy is gone to work honey." Her little eyes were sad. She loves him so much!
Oh some more news. We found out on Wednesday that Lexis has to get her tonsils out. My wonderful mother took her to the doctor because she's been having trouble again with her throat. (Remember she just got over strep throat a few weeks ago.) I thought to myself. How is this going to work? She is scheduled December 26th. Yes the day after Christmas. I'm hoping and defintely praying that Ava wil stay the same and we don't have to do anything major with her before then. Lexid'd doctor said we could wait but we don't know how long Miss Ava will be in the hospital so while we are ALL still home we have decided BEFORE is better. Lexis insists I have to be with her the entire time. I agreed. Daddy will have to be nurse for a whole day!
Here is how Ava has been doing....She eats very little. The best we have found is that we feed her pasta (13 baby pinwheels) with butter about 5 or 6 pm and it stays down. She did go 27 hours without throwing up BUT then I was bragging way too much and up it came. The last two days if she does throw up it is clear, no green! THIS is beyond amazing. She has bowel movements but often she needs a supository to help her pass it. I haven't had to give her Ativan (for restlessness) for about 4 nights. The medicines she is on....Zopran (nausea) Protonics (heavy acid reducers) Erthromycin (anitbodic to help her stomach empty faster) Famotidine, (acid reducer) Ativan and Tylenol suppositories when needed. I think that is all of them. The doctors say the longer they can wait for her insides to heal the better off she will be, so they are thinking now maybe the middle of January. We have an appointment on Tuesday. She needs to do a swallow study test. I told them I want them to put an NG tube down to her stomach because I know she will not be able to drink all the Barium. AND I am not letting them put down very much. Last time she got really sick with that test and was sick for days. NOT WORTH IT FOR NOTHING! We also see the GI docs (stomach docs) This appointment will last all day.
Lexis has a Christmas concert tonight. I am going!! I can't wait she loves to sing just like me. To actually see her up there singing is going to fill my heart with such delight. I'm really excited plus I get to get dressed up and leave the house!! I love you Ava but Mommy needs a little time alone every now and then!
Here is the proof that she is "All over the house." She doesn't do stairs well but that doesn't stop her. She makes me very nervous. Our stairs are straight up. (She loved the stairs before she reherniated, keep that in mind.)
Here is Ava strolling her IV nurticians around. Huh does this work? Not sure yet.
One more cute picture. This is the girls this morning getting into something they are NOT supposed to....Daddy's electric guitar. Don't tell Brian anyone!
I just have to say a few thank you's before I go. We got a %50 gift card to Wal-mart from Stacey in Pennsylvania. Stacey we don't know you but you are one of God's choosen messangers and we thank you from the bottom of our hearts. (In fact if you can keep a secret...we bought Ava's trike for Christmas with your money! I can't wait until she sees it. She misses the one at the hospital! Also a thank you to Nicole in our town of Burlington Iowa. She sent Ava a gift basket of goodies. It was so sweet! She hand colored the card because apparently "Barney" is hard to find now says. We are so grateful to everyone that stops by to see how our daughter is doing. We don't doubt that she is very loved.
Last but not least I redid my "little Angels" video. It now has 26 cdh kids on it. I feel very honored that so many parents let me proudly show off their little miracles! I am very humbled by all that God does in our lives. Here is the movie.
Again thanks for stopping by!
~Terri, Brian, and the girls