Both lines working....

We drove 200 miles for a 45 minute visit! Everything went as well as planned. We arrived about 7 a.m., was taken immediately back to a room, vascular access came right away, meds delivered from pharmacy, the clot was dissolved and on our way back home. I was down for my nap by 11:00 a.m! Thank you for prayers. Both of her lumens are now working. It could happen again but we are hoping not soon. I am going to find out if our local hospital can do this quick procedure her if it happens again. Whatever it is called we aren't allowed to do in the home with our nurses but it isn't that hard. Annabel is doing fine and happy to be home.

April Fools... NOT!!!

As our sweet nurse Rebekah called me this afternoon around 4:30 or so to report that we needed to bring Annabel to the hospital. My husband and I decided to drive to the beach and discuss the possibility of building our beach house back since the hurricane washed it away. So when she explained that she couldn't draw back blood or flush her central line with saline, my very first thought was panic! In a flash a thought went through my mind that it was a brand new line just placed Wednesday night late and we had just arrived home last night, so of course I thought no way, this is April Fools Day!
But I could tell from Rebekah's voice that it wasn't a joke, she was serious. She had already called the nurse at the company who supplies our TPN/Lipids to inquire.
When this sunk in, I realized that our local hospital doesn't handle central lines, only Picc lines. So I called Vascular Access at Texas Children's and they called our nurse, Rebekah to walk her through a few things to try to get it flowing again. It didn't work with the measure that could be done in the home. If we drove to Houston due to the hospital being so crowded we would probably be sitting there until tomorrow morning, I was told. So she told us to leave our home at 5 a.m. and arrive around 7 a.m. and Vascular Access should be paged to see us in the Emergency Room. As I sit here, hours later I still cannot believe our struggles with the central lines that are placed into Annabel's body. She has had 3 serious line infections, one line the catheter was flipping up in her vein near her neck, another line that was only in about 5 days, would flush but not draw blood, was found to be pulling back on tissue and had to be removed. So now the 6th one has been in place for not quite 24 hours and already is giving us trouble. Oh how I am praying they can do some sort of power flush and free up this line. If this wasn't such a serious matter, I would truly think someone is testing me to see just how much I can handle.
Another issue we noticed tonight is that she is running a low grade temperature of 100.1. Of course this isn't much at all, but since the day after they pulled Annabel's infected line her temperature has been anywhere from 95.1 to 97.8. Most of the nurses commented "is this her normal temperature?" I am not going to get all caught up in worry over this, but with Annabel it can always mean the beginning of something. Prayers appreciated and Good Night....

The plan is...

to discharge today. I am so excited and I didn't even ask and or beg. They came in and said they were getting all the paperwork in order, labs drawn to make up the TPN/lipids, and get the IV antibiotics ordered. Even though this infection brought us by way of three different hospitals. I can say that each stay was welcoming, peaceful and with good communication each time. Many people have emailed or forwarded me the link of the Serratia bacteria/TPN Feeding Bags. Thank you for the information. They feel that Annabel just has so much overgrowth of bacteria/fungus growing from so many antibiotics due to continuous UTI's.
I continue to be amazed at how many people remember Annabel. St. Elizabeth (our home hospital) still continues to welcome us and make us so comfortable. This is where we prefer to stay because it is so close to home. They tell me all the time if she needs labs just bring her up, since they know her vein so well and all the Picc team is always ready and waiting for her. The nurses continue to be so sweet to Annabel and myself. Even when we get transferred to other hospitals they call days later and check on Annabel. I know they are busy and they find the time to check up on her. This last hospital that was new to us, Memorial Hermann in Houston, was so welcoming. I have to say I had all kinds of anxiety built up as to how I would have to justify why we do things for Annabel due to her Trisomy 18 diagnosis. But of course, this never happened. Not one time did I feel like they didn't think she was the most important patient in their hospital. When we were being transferred on Monday evening to Texas Children's Hospital they formed a line as she was leaving the floor with nurses, aide, charge nurse and residents and all said what a sweet patient Annabel was to deal with. They talked of her beauty and how joyful she was to treat. I was touched to say the least. Our stay here at Texas Children's has been very good. There has been great communication and everything that needed to be done was done in a timely manner. We were so lucky to have a resident that graduated with Tara (how is that for making me feel old) and she was on top of getting everything done. She was very aggressive about getting Annabel into surgery last night. Since she was an add on, it was very likely she could have been bumped until today, but she wasn't due to her following up. I think she is going to be a wonderful doctor very soon. Also our attending (our first encounter with dr. L)was one of the best ever. Everything he said would be done, was! Also, her anesthesiologist, was very amazed that she was full trisomy 18 and had just turned 6. He said that is something you just don't see. I knew he was touched by her and would take good care of her when she went back. So all of this said, it makes for a much less stressed out momma. My prayer is to take Annabel home and pray for these infections to go away and that it be a long time until she needs another line. They reminded me that Annabel is very lucky. The three she has had 2 from yeast and this last one Serratia (gram-negative rod) are all considered life threatening. God continues to heal Annabel each time quickly but at this point no long term side-effects of these infections. So I probably won't blog again today since we are all busy unpacking and getting meds and schedules in place. If anything changes I will come back to the blog and post. Thank you thank you for always carrying us through!

Out of surgery...

Just wanted to let everyone know she is out. I cannot have my phone on in recovery room and didn't want to text or call this late. Thank you for continued prayers. Surgeon said all went well.

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.