Wednesday, January 4, 2012

First week of 2012...

Annabel is at TCH. She has abcess inside tummy right around her new g-tube button. They will be placing PICC line tomorrow to run antibiotics. She also has cold/congestion. I just heard from nurse not the doctors they will be placing her back on TPN/Lipids. I am praying this is just til they get her eating in her g-tube again. Monday was a tough day with vomitting and many dirty diapers. That is all for now...

Today is exactly two weeks that Annabel has been without TPN. These last two weeks were so nice. Sunday when her fever hit 101.6 we didn't run to the hospital worrying about a line infection. It was so nice to just think maybe she was getting a cold or maybe just a virus. Also teo weeks with no central line meant she could enjoy a tub full of water, playing with bath toys and lots of splashing. It wasn't filled with constant itching or pulling her dressings off at any hour of the night or day. Also no weekly bllod draws or time spent each day mixing her new back of TPN. A break from elevated liver levels and a rest for damaged liver. She is so easy to carry around without worries and the extra pump...so tonight I have reason to be sad! So sad that they decided already to put her back on 24 hour TPN/Lipids. My prayer is that this is temporary and that maybe her belly is just suffering from a virus of some sort.

So tomorrow she is scheduled for surgery. I am choosing to remember that many more tmes than not Annabel comes back to the room just fine from surgery. This is not a big surgery but I can't help but remember in September neither was that one. That time she was septic. This time she isn't that sick. I am so hoping that maybe be release either tomorrow if all goes well or latest Friday. Her cellulitis/abcess in her tummy isn't worse today. They are give big antibiotic and watching each day. I am fairly sure that isn't keeping us inpatient. Will update when we have more info.

Happy New Year to all of you!

Sunday, January 1, 2012

Can it be????

Is it really possible that Annabel could be free of a central line in this new year? Annabel lost her central line two days before Christmas. Late Wednesday night the nurse had very weak blood return and no flush. So we gave her fluids in her tummy until Thursday morning when we could go to our local ER. After xrays to determine if there was a kink/or out of place it was thought that it was just clotted. After a few hours they began to attempt to dissolve the clot. With in just a few minutes her line ruptured with a split right up the side of the line. I became sick to my stomach. The person doing the procedure looked up and said this isn't good and indicated that we would probably need to be moved to Houston. Anyone who talked to me during December knew that my wish was to be home for Christmas, not in a hospital somewhere. I knew this was possible with 3 great nurses and myself to care for Annabel. So soon after the line ruptured the doctor came back and said he had consulted the pedi and the pedi surgeon and they were arranging her transfer. I am such a baby, tears started flowing and my mind went crazy as to how I could stay home/local. I tried making some calls to our pediatrician and finally reached her via cell phone.(This is something I just don't do!) I asked her what she thought about trying to get more feeds in with her Elle Care and Pedialyte. We talked about how Annabel was eating a good amount via g-tube and that we would watch for signs of dehydration and if we saw them we could then go to Houston for the central line. I then went upstairs to surgery at our local hospital after being told that our pedi-surgeon was there doing surgeries. He came out very quickly and we talked about our plan. I begged him to just pull her line and give her a chance to try it. He gave us a feeding schedule to try and up each day and night. We declined the ambulance for the transfer and they sedated Annabel and he pulled the line. After watching her for an hour we picked up our sweet girl. No line in her chest to watch out for. That evening she got to sit in her bath with as much water as she wanted. She splashed, smiled and loved every moment of it. At first she was tentative about being in this much water and it being ok to splash. Each days since then, this is her favorite activity.
I am realistic and realize this maybe temporary. Just Tuesday, Houston called and said we had to come into their hospital for a Chem 10. All the way to Houston just for this simple blood test. They felt sure that her numbers wouldn't be good. We were watching very carefully for dehydration and saw no sign. I was told that she may need to be admitted for placement of her central line.  I had to go through the ER and when I got into a room quickly in the ER I was told they were going to admit her. I said what??? no Chem 10 to see if things are out of the normal ranges. The doctor said they were getting her a room and the lab would be done upstairs. They said I could feed her until 4 a.m. then she was be on IV fluids til surgery. For a while I resigned myself that this was inevitable. The next morning on early rounds I ask the resident how her numbers were and he said all good. So then again I began asking why??? Even her GI says that this line must come out that Annabel gets so sick and that a central line could be what takes her life. This last year has been so much worse for Annabel than any other year. Just in September/October we spent a week with the doctors saying each day that she wouldn't survive what was taking place in her little body. But she did! It brought us all to our knees about the reality of life with Annabel and without her...
After talking with the doctor making rounds we were discharged with a feeding plan. When I called to schedule her follow up with GI we learned this was not what was discussed on consult.
For now Annabel is really close to what they want going in her belly. She is happy and feels very good. Annabel has always experience gagging/retching and vomiting. The only time this doesn't occur is when she is totally TPN dependant (no feeds in her belly)! So yes with us pushing her tummy with more feeds she is retching and gagging with some vomiting. We are doing her weight daily and she is maintaining  her weight.
Without a central line Annabel doesn't scratch til she bleeds and she doesn't grab at her central line and rip her bandages off daily. We do not have to medicate her with benadryl for all the itching and each time she has the slightest fever we are not running to the ER or doctor.  Our prayer is that she can stay without a central line. She is getting a cold as of early this morning and her g-tube site isn't looking good. It is inflamed around the site and something is very hard right behind and around her button causing her discomfort.
So enough about sweet Annabel. We had all the family home for Christmas which was really nice. Now that Derek is married he splits his time with Linzy's family. We are blessed that they are local so it all works out. Tara was home for Christmas but has headed back to get ready for law school to start up again. Carly and Colette will be home for another 10 days then head back to their school. Tyler should be attending school here locally and still does his drill once a month in Houston.
I want to thank everyone who has commented, emailed, called or texts this year. Your thoughts and prayers are so appreciated. It is so hard to believe that this year in just a couple months she will be turning seven. We have been blessed beyond what we could have ever imagined. She has brought so many people into our lives just through her tiny little life. My prayer for all of you is to have a very blessed New Year to all of your families.
We have also decided this year to rebuild our beach house. It should be ready by late spring so we are hoping to spend time there during the summer.