Nite, nite, sweet dreams...

We were transferred last night around 10:00 p.m. to Texas Children's Hospital. Today began the day of the doctors rounds and the decisions to be made. Everyone agrees she has limited line access. It is 9:30 p.m. and two surgeons just left to see about getting her scheduled for a MRV (basically an MRI that looks at your veins). If this does show good access then we should proceed very soon with the central line. Earlier today another doctor said ten more days on the antibiotic and I didn't bother asking if we could go home on the antibiotics. There is really no use until we have the central line placed. So all in all, it is pretty much like before, new line and more antibiotics.

Waiting transfer #2...

Today came with a new plan and a surprise visitor. First the plan is to transfer to Texas Children's which is right up the road. I can see the tower out our window her at Memorial Hermann Hospital. As of 4:00 a.m. this morning it is becoming very hard to find any veins. The one she is getting her iv fluids and antibiotic is getting very temperamental. She screamed for 45 minutes about 1:20 a.m. and they had to disconnect. So they hooked back up same IV and slowed the rate to try to make it last until we get to Texas Children's. The main doctor who was off the weekend listened to attendings and residents and believe her medical condition would be better dealt with for surgery at the hospital where they know her and how to put her to sleep. They also know how hard her chest is to get a line in for the ideal placement. They have two early cultures that still show negative as of today. I guess potentially if todays comes back by tomorrow that would be considered the third negative culture. But since we are transferring they will have to come up with their own plan and it may mean 5 days, we will wait and see. I needed to learn patience and not control every situation and that is what I am trying to do.

Praying though that maybe Wednesday she may have central line placed into her chest. Then they (not me) will decide if we will stay in-patient at TCH or if we can return home to complete the course of IV antibiotics.

Now, for the really big news who surprised Annabel today..........

One day neg...2 more to go!

Annabel was so bored today, continually grinding her teeth so of course, I was going crazy that they allowed us to unhook from all pumps an monitor and break free of this room. We went us a couple floor to a huge sun room. Then also that floor had a very nice playroom. Then I took her to get my dinner in the cafe on the 1st floor. It was nice to walk around a bit. This is a precious little boy that was wanting to play with Annabel. It was so fun to watch Annabel. I would put a toy in front of her and she was not so excited to play with it, but as soon as this little boy came over and started pounding on the keys she began to pound on it also. She was hardly smiling at us adults but yet she smiled broadly for him. His mother was very nice and I enjoyed talking to her in the playroom. He has something in his 16th chromosome like maybe 1 less, don't hold me to that but he has similar problems to what Annabel experiences. It is funny how just talking with an adult even briefly help you not feel so alone. She like me also had older kids not living in the home. At least she didn't ask me if I was Annabel's grandmother! This was a very friendly little boy Z, who is 6 years old. Wow, so is Annabel and what a difference. Annabel loves this attraction as it bounced up and down. Z wanted to hold her hand. Back in the room after a little bout of vomiting she is sitting up playing with her fireworks app on the ipad. I enjoy playing with this app also.

All in all today was a ok day. The best news of all is that we have our first culture back with preliminary results saying it is neg in the blood. Now all we need is 2 more days worth of negative cultures and then we can talk central line placement. Annabel isn't keeping anything down. I am sure the infection is part of the problem but it hopefully wouldn't keep us here. She has her own set of feeding issues and we work outside of the hospital with her GI doctor.

I had a nice sweet family, the West, who came by around noon and brought me lunch and dinner and several goodies. It was nice to visit.

Today wasn't my best day as I have begun to get migraine so often. It makes it harder to handle Annabel and then my tummy also became upset just for a few hours. Tonight I feel so much better. I do know that many of my issues stem from stress. For example I know that every morning we need labs drawn. I know I have to go through a few sets, levels of people that draw the blood. Finally, this morning I asked could NICU please come in. They called and they came over. They want the labs done at 4 a.m. so with so much trouble this morning Annabel was awake an agitated after they left. I was so tired when they all left out after 6 a.m. and Annabel just wanted to lay there and grind those pretty white teeth wide awake. Of course, I don't dare want to fuss at her so the stress internalizes and I am sure the migraines are brought on by the added stress. I know that coming to a new hospital 2 days ago added stress. I have to say it has been a pleasant visit and everyone is very nice.

HELP is arriving tomorrow in the way of my oldest daughter, Tara. Yea for Annabel and myself. The email, text, comments and phone calls continue and I know that she is being lifted up and for this I thank you. I am sorry if I haven't answered any of them as I seem busier here maybe due to the fact that they don't have any history with Annabel so there is someone coming in and out very often. But please know that I covet those prayers from you faithful friends.