Well Ava is doing all her little body is supposed to do to get rid of this infection. The cultures finally showed a positive result of gram negative in her port culture both at Great River and here in Iowa City. The peripheral blood draw (a blood draw from her arm and not her line.) came up negative. So our options are to remove her central line that has been helping us keep her fully hydrated, or we can keep it in and treat it with a high dose of antibiotics and closely monitor it.The surgeon wants us to be totally safe and just remove it. We are really weighing the long term gains and loses with the short term risks. It is such a hard decision. On one side I want it gone but then my head tells me that this is our safety net and if she becomes sick this saves us each time. Then I tell myself that she is almost up to full g-tube feeds and this is just something that will have to happen in a few months anyway. HOWEVER we know that Ava's little body is so special and it needs all the extra help it can get. This is the toughest decision we have had to make so far concerning her overall health. She was doing SO well the last few months. Can we come off of the central line know and soar or will we take a step back and she will lose weight and we will fight tooth and nail to get her to gain? I wish this was easy but it is not. We just want to do what is right for Ava. I know lots of people have given us their opinions and it is so hard because you all don't live with her and see her extra needs.
Her GI doc came in and talked to us. I didn't care for his approach. He was talking about transitioning her off the g tube and I know that is no where soon as we were dealing with her line right now and she wasn't even off that yet.....ARRGGHHH I am so tired of "stupid people". Get a clue. I know this sounds bad but my Mommy mode came out and I stood over Ava while he was talking and almost wanted to say, "Bye, bye!" You have to see and live in our shoes before you go telling me how to feed my daughter. I know her better than anyone. This is so frustrating at times.
When I was changing her line dressing at about 1pm Friday I noticed her g tube was oozing puss and blood. My first thought was perhaps this was the infection but then the surgeon came in and said that the line tested positive for the gram negative....OH boy. He didn't think that this had anything to do with the infection but he ordered a CT scan of her belly to be sure there wasn't an abscess in her stomach or around her tube. Strange thing is she has never had a problem with leakage or ooze around her stomna (hole where the g tube goes into her stomach.)
She feel asleep at 7 pm and then spiked another fever of almost 102 degrees at 8 pm. She didn't wake until we woke her at 10 to get the scan done. I was able to stay in the room with her and it went smoothly. Good news is they found nothing. I also had them check her gortex patch (diaphragm) while they were doing the scan.
Fun fact: A CT scan is 400 times the radiation of one regular xray! Ava has had 4 of these.
On the way to the scan.
Our wonderful nurse Andrea.
So then we got back to the room and gave her a bath. She LOVED that. I just can't seem to picture her like before without the line.
We could barely get her out she played and played. Good thing was her fever was gone with the bath. Her fever has not come back after the 8 pm fever so she has been fever free for almost 12 hours. Then she decided she didn't want to go to sleep that she would just keep playing and entertaining us. We are so exhausted. I decided to let Brian handle her and closed my eyes for about an hour and a half. I woke to her tugging on my feet. I felt a lot better after my nap and decided to let Brian have a turn. I held Ava and we watched our home movies until she finally fell asleep at 7 am this morning. She fought sleep so hard. I think she felt so much better that she just wanted to stay up all night.
The interns just came in about a half an hour ago and told us that they had her line removal surgery scheduled for 10 am this morning. I haven't signed the papers as we are not 100% sure. I want to talk to our dietitian Jean for her last words of advice. she loves Ava and wants what is in her best interest. I think she is amazing. You know the staff cares when they must read all of our daughter's updates and they check to see what is happening if they hear talk of her being admitted. I thank God that we get such great care.
I am a little scared right now. I think the meds are working and she looks 10 x's better this morning than yesterday. I think we are on the way down the hill now. She is sure a hand full but I wouldn't want her any other way. That is the drive that kept her fighting and kept her alive!
Andrea found these antique stickers of the Teletubies. Her face light up like a Christmas tree it was so nice to see!
Snuggling with Daddy at about 6 am. He said he could probably sleep standing up! Poor Daddy......
She hasn't thrown up since yesterday probably over 24 hours.
We are hoping to have a great day today. A decision has to be made and soon. How's that for an update. Pray we will make the right move. We know that God does things in His timing. We are just grateful that she is improving!
~Terri and Brian