Saturday, March 26, 2011
Just a few pictures of Annabel playing in the playroom. I think she enjoyed getting out of the room but was so tired upon returning.
Update for today is that she still continue to have bile coming out of her g-tube and the loose stools have come back. She isn't tolerating the feeding and I am praying it is due to the infection. We are holding the feeds at 2 a.m and 6 a.m.
Still no clear blood cultures but hoping that tomorrow one will come up clear. As soon as we have 3 days in a row of clear cultures we can plan the surgery to place the central line. Thank you for continued prayers. They have some concern that her blood pressure are too low, but this last one looks better to me. She isn't needing any oxygen right now and I think that is a good sign.
We knew yesterday that the bacteria was growing in her line and that was pulled. Her fevers were so much lower last night after arriving in Houston that all during the night I convinced myself that it wasn't growing in her blood. But when the team made rounds this morning it is in the blood and the bacteria was identified. So we also know the sensitivities, so we are hoping that with the lower fevers she is responding. We had some smiles yesterday and clapping but not today. I think she is just tired.
We knew last night her vein (iv) wasn't going to last but had not blown yet. The flight team came in to try, two big size men going in for the dive. None was to be found. But today another team came in and one was found. The other blew right before so we are thankful to have another. Early this morning they were talking about going into her neck, and while if it had to be, I am glad we have one in her wrist.
As soon as we get a clear culture from the peripheral blood culture we begin the count of 10 days for the antibiotics.
I have to say that a few times yesterday afternoon it hit me that Annabel was going to a place where no one knew her, they didn't know how she silently reacts to pain, silently with tears, a grimace, furrowed brow means pain and when she writhes in pain she isn't playing she is uncomfortable. I have to say that sometimes convincing others is tiring and frustrating. Also, dealing with the Trisomy 18 issue and how much her life is worth can be overwhelming when coming to a new place with new faces. Connie, Mallorie's mom, and 4 other sweet kiddos, my friend talked to me when I needed to vent yesterday about leaving our home hospital to come here, told me that maybe, just maybe Annabel was going to a different place because someone needed to know her story. Someone would learn of how precious and what a miracle she really is. People are so drawn to her happiness and joy and life in general. Since arriving, no one really care about her Trisomy 18 or wants to question anything. She is really a little 6 year old girl with health issues who has a nasty blood infection. They just want to treat her here and make her well. They listen and recognise that I know some things that work better than others. They recognize her silent ways of showing her discomfort.
Also, the facility is very nice, rooms comfortable for sleeping and sitting, staff is very kind. I am well rested as can be at this point. I am so thankful that I haven't had to encounter anything that I feared could happen.
The most frustrating thing about this infection is that it is the same bacteria that Annabel has been on IV's for at home for UTI's. It is a gram negative rods?? called Serratia that she has been treated 3 times since the end of January. It is showing sensitive to the antibiotics but doesn't seem to be getting rid of it. UGH!!!
The picture isn't smiley yet but I think within a day or two she will sporting a smile and sparkling eyes. Thank you, thank you for the prayers sent her way. So many of you continue to share her story with friends, prayer groups and your church. It is through prayers that she weathers these blood infections as well as she does.
Friday, March 25, 2011
We are here in our local hospital and we are waiting to transfer. TCH dosen't have beds available. They just asked if I would go to other hospital in Houston. At this point it hasn't grown yeast but has grown a bacteria, gram negative bacilli in her line. The line has just been pullled. As with the yeast the doctor said this one isn't good to have either, thus the transfer. They have gotten her fever down a little, given Benadryl, started IV's and given first does of antibiotic. She is resting now.
Thursday, March 24, 2011
Asking for prayers again. We are trying to make it through the night here at home. She has high fevers, chills, vomiting and itching. Yes, it looks like the yeast in her blood is back. If we drive to Houston tonight we will probably not have a room before morning. If we can make it til 8 a.m. We can have direct admit to floor. If we go to our local hospital they will just have to transfer us to Houston. Thank you for always being there for us.