Snowed in....NOT!!!

Sometime, just sometimes our weather forecast isn't exactly what is reported. But we had the day off from school just in case. Also with that the roads were icy so we enjoyed just being together today. The road were not safe for Debbie to come to work today, and though she was missed, it gave me much time to be with Annabel. Thus, the reason for too many pictures, if that can be so!

She slept very late today probably due to the nausea medicine from last night. I had a great night sleep due to our night nurse pulling a shift. Then my least favorite thing to do is a dressing change. We are having to change at least every other day and sometimes back to back days. She is itching and scratching and opened the top of the dressing during the night. My nurses do such great dressing changes that I have only had to do one other in 7 months. As much as I tried with 3 different glove changes I know I didn't keep things as sterile as they did. We lack some supplies even though pleading with our company for more due to many changes but they just don't send enough. I will be calling Monday to get what is needed.

Then onto the fun things. We did go out with Tyler (Annabel's brother) for lunch at Jason's . Since my older kids don't live in our home I always enjoy going out and listening to what they have to say. We had a good time and Annabel was exhausted upon returning and slept for 2 hours. She is doing some funny things like just sitting up, one minute laughing and smiling then she leans forward as if she is going to fall asleep. This is even if there is nothing for her to lean on. She seems to tire out so easily.

So of course, the first picture is of her napping. The second group was playing with her blocks, and animals in her cube chairs. The last group was when I was setting up to mix her TPN/Lipids. This is a new toy that she really seems to enjoy. Until recently, Annabel really had no interest in toys. She has never liked touching, no interest in reaching out for much of anything. We are enjoying watching her explore and become more interested in her toys.

I have also come across some blogs of mom's using Ipads for communication devices for their children. I received one for Christmas but haven't really had a need for it. Today after researching some blogs and getting some wonderful suggestions for apps, we now have something new for Annabel to use. It is so much easier and lighter for her to use. She seems very interested in the little time we spent with it today.

Recently, we have also moved Annabel's room. We painted the new room very light, basically a white linen. After moving her sleep safe bed in and her furniture which is so light, I keep thinking we needed some color. I mentioned this to Rebekah (our nurse) and she just happened to know a friend from church who could help us with painting trees, flowers etc. on her walls. This last week her room was transformed into so much beautiful, happy colors. Her rug arrived today which added even more color. She will probably be finished this Monday so hopefully early this next week I will post some pictures of her new room.

Why, why, why...

First off let me say I hope everyone out there is stay safe and warm. It is hard when bad weather hits and you have sick babies. Also, thank you for your continued prayers for Annabel.

WHY do we feel bad when we speak up for our babies and cause other to be angry with us? This was my experience today. I hate sometimes who I become when I feel I have to do this for Annabel. I do admit that sometimes I am wrong, as I was earlier this week with one of Annabel's school therapist. I did have to admit I was sorry, even though embarrassing, but once it was done I felt better. None of us are right all the time. Actually probably most of the time I am not right.
But today the hospital called and told us that Annabel's urine grew three different bacterias. We always grow one and we treat if needed. I realize there are two schools of thought on UTI's and the over use of antibiotics. If you are someone who has these experiences please comment and tell me how you handle the infections and the possible over use of the antibiotics.
We have two different thoughts here, and locally our sweet pediatrician, Dr. B gets the results and depending on the numbers, bacteria, or whatever she sometimes prescribes the antibiotic. She is very aware of the overgrowth situation but she is listening and seeing Annabel and knows she needs some relief. All the while keeping in mind the central line issues. On the other hand our urologist in Houston basically wants us to ignore the UTI's until almost septic. There is such a fine line with Annabel. There isn't much warning when we are crossing that line. It is a little more critical now that we have the central line. Before we had more time to play around but not as of late. Let me also say I understand the urologist thinking about over treating with antibiotics and the overgrowth. He doesn't see Annabel that often unless well for checkups due to the 2 hour drive which isn't fun when ill.

So as I said the hospital called today to give the results. Her bacterias are enterococcus faecium, enterobacter cloacae and serratia marcescens. Tuesday Dr. B prescribed Supprax until the culture returned and showed sensitivities. After the hospital called and gave me the results since these were done in the ER, I waited a couple hours and phoned my pediatrician office. I love their office and everyone involved. But after a call there and speaking with someone that I had to be more than aggresive with, which left me feeling so bad. I hung up very rudely after being told everyone else was waiting on their results also. I was told they have 48 hours after receiving the results to call the patients and give results. The hard part was that I already knew the results and looking at Annabel knew that the antibiotic she was on wasn't doing what it should fast enough. She wasn't worse she just was very tired and still having her painful spells.
Soon after this another nurse who we are use to dealing with called back and the doctor had looked at it and was calling in another antibiotic to go along with the first one due to the bacterias.
She said that he was calling in furodantin and because I had already had an issue with the other nurse I didn't feel I could share that this antibiotic make her very sick. She has been on this in the past but basically in the last year I just say we are "allergic" to it. She vomits and can become so sick from it. No, I don't know if she is truly allergic or not but it is the only one she cannot take and becomes so much sicker just trying to finish the 10days of it. Well this afternoon after starting it (within 30 minutes) the nurse brought her to me and said she was becoming very pale and not doing well. She wasn't really wanting to play, laugh, but only lay on my chest. Within about 15 minutes she was vomiting and doing poorly. The nurse said that we can't give this to her since it makes her so sick that quickly. Each time we do give the antibiotic it takes less and less days for her to become sick. I have decided from now on for Annabel's sake I WILL say she is ALLERGIC to furodantin.
Of course, I will call tomorrow and speak with Dr. B's nurse and explain that she can't take the antibiotic and she will understand. What I am most upset about is that I questioned myself because someone else didn't understand Annabel and her case. I have to remember that I know her better than anyone else, that she doesn't have a voice. I felt I let her down tonight because I let someone else make me doubt myself. I know other feel this way, so I am not the only one. Wow, what a long rambling post all to say "How do you treat your childs infections? Do you use the antibiotic or do you withhold them?

We should hear tomorrow about the blood cultures from the central line. I truly don't believe she is looking sick enough to have it in her line.

Baby, it's cold outside...

Praying that everyone stays safe and warm!

Quick trip to the ER...

Again, Annabel has another UTI. The are beginning to come back closer and closer together. She has been off of antibiotic more than a week and we have another one. We are waiting for a VCUG to be schedule to make sure Annabel's reflux (bladder back into the kidneys) hasn't come back. She had a surgery and in October of 2008 it was still holding. She also has had some fresh blood in her g-tube when we vent her and she will probably need to have a scope done to see what the bright red blood is coming from. She isn't acting very sick, just has spells of pain and discomfort and looks tired more than normal. She also seem to be gray tonight but it could just be that she is tired and pale. Her liver enzymes are way up again, yuck! Praying that it is just a reaction to the UTI that she is experiencing. So we wait for blood cultures drawn from the central line and urine cultures to see which direction to take.

So thankful...

There are many things I am thankful for in this life. Of course, you know I am thankful for Annabel's life and all the people who she has brought into our lives. To each and everyone of you who pray for her journey and the strength and peace for me, this is priceless...
This weekend I was able to get away with my family for my father's 80th birthday. I am so blessed that he is in good health and takes care of himself. My sister, brother and myself wanted to take him somewhere that was fairly close (I don't like to fly) and that would be new to most of us in the family. So my mother, dad, siblings and most all of our children headed out to New Orleans on Friday and returned today. We all seemed to have a great time being close together in the hotel, enjoying meals, shopping and laughing together. (OK, let me say Bourbon Street is so not my favorite!) Why would anyone want to go there and put up with the crowds, drunkenness (is this a word)?? We went and had a nice dinner at Brennans and then most everyone wanted to walk, since the air was nice before heading back to the hotel. The minute we turned on this street I went in total anxiety mode. Let me tell you it isn't even Mardi Gras. I can't image being there anywhere near this time. It took what seemed like hours to get off this street. I don't want to be anywhere that needs that many cops/guard on horseback ever again.
I hope this doesn't offend anyone but this isn't my ideal of fun.
Yes, by the way my twins of course are wanting to go to Mardi Gras and think I am the worst parent in the world for not letting them go. I can't stop them in a few years but for now I don't feel it is a safe place to go. My heart broke for young girls who appeared to be their age, and where clinging to guys and neither could walk a straight line.
So sorry from getting off the point of this post. I love my dad and am so blessed for the wonderful life he has provided and I am thankful to God that he has blessed my father with a good life of health. Also, a huge thank you to my sister for prompting my brother and I to get into the celebration mode and appreciate these 80 years. To my brother and my nephew who hoped a plane from Dallas to New Orleans to be with us. To my family minus Annabel and Tyler who weren't able to attend. Tyler had the flu and it just wasn't a place to take Annabel.
Debbie and Rebekah kicked in overtime to make sure Annabel was cared for and allowing me to go.
An update on Annabel is that she is going to school most days. She did have an EEG and CT this past Wednesday due to a couple episodes that the nurses felt could be seizures in the past. Of course in the hour that she was hooked up she didn't have anything close to things looking like seizures. The findings of the EEG was abnormal. We have been told that this is what is to be expected. The neurologist did say that this puts her at high risk for seizures but I am holding on to the fact that as of this time we aren't opting for any seizure meds and will just watch her. The next step would be a much more involved test that would require a few days inpatient.
Annabel is slowly getting back into therapy when she feels well. She seems to be happy most of the time. She still has many episodes of discomfort in her belly. I will be videoing the next couple weeks to show the GI doctor. Annabel continues to be TPN/Lipid dependant. Her GI doctor has commented to me when consulting that he doesn't hold out much hope for her gut working again. I just feel he is frustrated that we can't successfully put anything in her belly. It seemed to hit me hard at our pulmonary appointment this week. Our pulmonary dr. talked with our GI doctor concerning some meds that he wanted to resume for Annabel concerning her secretions. The GI dr. told him he didn't feel there was any hope that her tummy would be working again. We are continuing to give her small feeds of breastmilk to have something going into her belly. She is still off all her meds since they have to be given into her tummy.
We are happy to see her smiles back so much of the time. She is hugging and loving and charming everyone she meets. Thank you for the continued prayers and I will try to post some pics this week.