Friday, November 19, 2010

Universal Child...

This song was sent to me by Emily's mom, Sara. I listened to it and cried. Then yesterday morning I heard Annie Lennox sing on Good Morning America and she sang Universal Child and I cried again. Today I purchased the CD and yes the tears fell again.

With each line of this song I think of Annabel. It is my constant reminder that we are her shelter from the storm, from the pain and hurting. I don't have to do anything heroic, I just have to be here each day and keep her safe and warm. I can imagine how this song rings true for so many of us who experience this life for our children. So just sit back and listen to the beautiful words being sung...
The last two days have been great for Annabel. She is off the IV antibiotic and just to finish the dose we have to give her benadryl due to her itching and clawing at herself. She was drug up for several days and we just couldn't see this happy Annabel. I am so thankful for how good she has been feeling. Also, I began with a small amount of breast milk into her tummy. I know until I try giving her something in her tummy one last time I can't accept the fact that she is TPN/Lipid dependant. So for a week now we have been bolus 3 -4 feeds daily and doesn't seem to be experiencing any discomfort. We are watching for distention, bloating and nausea but she seem to be doing ok.

How many mountains must you face before you learn to climb.
I'm gonna give you what it takes, my universal child.

I'm gonna try to find a way to keep you safe from harm.
I'm gonna be a special place, a shelter from the storm.
And I can see you, your everywhere, your portrait fills the sky.
I'm gonna wrap my arms around you, my universal child.

And when I look into your eyes, so innocent and pure.
I see the shadow of the things that you've had to endure.
I see the tracks of every tear that ran ran down your face.
I see the hurt, I see the pain, I see the human race.
I can feel you, your everywhere, shining like the sun.
And I wished to God that kids like you could be like everyone.

How many tumbles must it take before you learn to fly.
I'm going to help you spread your wings, my universal child.

I can feel you everywhere shining like the sun.
And I wished to God that kids like you could be like everyone.
And I wished to God that kids like you could be like everyone.

Annabel loved wearing my reading glasses. It made us wonder if she saw more clearly with glasses.

Tuesday, November 16, 2010

Looking for Lissa???

Thank you to everyone who reads and comments on Annabel's blog. Sometimes if you aren't registered with when you sign your name I can't retrieved your information. So to all who comment on and off the blog your encouragement means so much to me. The prayers are priceless as you all know that is why Annabel is with us today. God hears and He answers prayers.

So Lissa Gressley commented yesterday on my stressed out post. Lissa if you read this you commented on the spiral tubing for the broviac line. If you can contact me again either on this blog or my email which is I would love to find out more about the tubing and understand how you use it. This blog has been a huge source of encouragement but also medical advice and so many wonderful suggestions. So please if you read this I would love to hear from you.

So to anyone else out there who may have some advice I never mind reading and maybe implementing something that has been helpful in your life with your child.

I will post more pictures from our day but she is pretty drugged from Benadryl. Annabel has been itching so much and clawing at her central line. She usually never plays with her button, lines or really anything. So we are assuming maybe the Gentamycin is giving her some sort of reaction so thus the drugged look. But with the help of our nurse we did get a small smile...enjoy!

Monday, November 15, 2010

Feeling the stress...

I couldn't think of a title for this post so I just thought of how I have been feeling. You may want to choose not to read as this will probably be more whining. For anyone who has read the previous post since the end of May, I have struggled with this Picc line/Central line. So this post is just more about that same subject.

The reality of Annabel's PICC line was that it was in right at six months. The skin was like raw flesh, very oozy and the stitches were very loose. But about a month ago as I was putting her to bed after rocking her to sleep, I pulled the line. It cause the line to move just a bit and the stitches as loose as they could be without being ripped. I felt horrible to know I cause her pain and that ultimately more irritation on the skin. We knew the line was already very short and had flipped up out of the place where it was first placed. So of course, I was stressed and found myself not wanting to hold her or play with her as much. My heart did but I didn't trust myself to not hurt her again. So soon after this it was decided by the surgeon that the line had been in long enough and she was going to be TPN dependant as much as they could tell. So she was scheduled for a central line placement.

This was to happen on this past Monday, Nov. 8th. I felt some relief knowing that this was going to be a more permanent type of line ( I perceived as harder to pull out or cause to move) and that we would not have to unhook the line each time she changed clothing. Because the central line is ran into her chest it is ran inside her clothing. So her surgery was very uneventful and she did very well in recovery. She had more nausea but as far as breathing she did so well. We were released and came home. That evening we received a call saying that she needed to be place on IV antibiotics and this could be done at home. Yes, no hospital stay, relief! Thank you, Dr. B!

So Tuesday was spent at home recovering. Tuesday evening she received her IV antibiotic (vancamycin). Soon after the nurse told me she was having a reaction and she did appear very uncomfortable. I was told to look for red-man syndrome and other side effects. Our nurse didn't believe this reaction to be red-man's syndrome so after calling the doctor we discontinued this and gave her Benadryl.

On Wednesday she looked well enough to go to school. I have to admit I was already struggling with an overwhelming feeling of stress. I knew we had to find an antibiotic that we could give and I didn't want to be admitted. At 11:45 I received a call from Annabel's teacher saying could I please come right away to school that Annabel's central line had broke. My perception was that it had been pull, the only way I knew it could break. So I raced to school and after calling the doctor was told to go to nearest ER. We did and were told to go to Houston. I had already called while we were in the ER and was told to get to Houston so they could pull the line and that she need to be connected as soon as we arrived. Debbie, our nurse who was off, offered to ride with me to watch Annabel while I drove. After arriving at the ER in Houston they began to talk of repair and not pulling the line (which required surgery and sedation). After a couple hours the tech who repairs/bandages they type lines came in and assessed that it could be repaired. So by 7:00p.m. her line was repair and after 4 hours we could begin feedings in the line. We were told to wait and attending would come in and approve our discharge. Soon after this a young surgeon came in, who we thought was the attending to release us, and said we are pulling the line and that she would go to surgery by mid-night and they would be placing an IV. It was almost funny as my nurse informed him the line was repaired and we were waiting discharge. He said no the line is contaminated and it must be pulled tonight. So thinking he was right we settled in for a long night and an admission. They IV teams came 2 by 2! They poked and prodded and dug and after 3 sets of these teams came there was finally a vein found but it was very moody and she had to keep her arm just right. Can you hear the stress in my writing. I wasn't even convinced the surgery needed to take place since some thought the repair was successful. Closer to mid-night we were told that she would be admitted upstairs because they couldn't work her in to surgery schedule. After loosing 2 rooms and it being 2:00 a.m. I was a little unhappy and voice my dismay. They found us a room in observation and by 2:30 Bella was sleeping soundly and we were still being told she would have surgery the following day. By this time we had seen 3 different doctors and the feeling was that the line was contaminated. At 6:00 a.m. a very young surgeon came in and said hopefully,we would go to surgery today. Ok, I was sleep deprived, very stressed and I looked at him and said "Oh no, you just used the wrong word! We are not hoping to go, we are either going or not going, so talk with someone who knows and tell me!" Around 9:00 a.m. a fellow came in who was with the same surgery group and after looking and hearing how the line just fell on the floor not being pull and broke off she said they would xray and make sure it was still in place and if so we could be released. She basically said that all the other doctors were interns or residents and that they didn't know anything. At least I felt we were getting somewhere and that I sure didn't want surgery if it wasn't needed. About 1:30 p.m. they read the xray and was found to be in place. Now, we just needed to hook up to the central line her TPN/Lipids and then be released. Thank goodness for my nurse because I was totally stress by this time and just wanted to get home. I was so sleepy and need to drive the 100 miles home.

On the way home, we stopped half way to get some water and when I returned to the car the nurse was very upset. Annabel's lipids pump was alarming and it was found that it wasn't reset for the lipids and it infused at a very high rate in 1 1/2 hours vs. the 24 hrs. it should have. The nurse was so sick but we were both so exhausted I found myself laughing and thinking what else can go wrong. One thing I was sure of was that I would not be returning to Houston. I needed to be home where the doctors knew Annabel and we weren't just a number.

So why do I write all of this in such detail????....not really sure, but maybe some sort of therapy for myself. Maybe it is the reality that Annabel is TPN dependant. The doctors aren't sure that her stomach will ever work again. In my mind I go over and over, have I tried everything out there. I keep feeling there has to be something else. This week prior to the line breaking, our liver enzymes were right at 500/again. This could be due to the UTI she was experiencing but it doesn't matter it isn't good. Also, another reason for writing this is that maybe someone with a central line has experienced it just breaking. Could this have been a defective line?? They didn't believe that was likely in Houston since it was so new. I told the story about my pulling the picc line because we are all human and things/mistakes will happen. With Annabel things can change quickly and that make it difficult for the nurses to keep up with the changes.

Annabel is not a hard baby and for this I am thankful. But inside I am torn up with what to do. It isn't like me to give up or stop trying. I am going to attach some photos but basically they are Annabel relaxing and recovery this week and weekend. She loves all the attention from her nurses who treat her like a queen.

A big thank you to my older kids who come by and play with her each afternoon/evening. She loves the interaction that they provide. Also, to Tara who ran back and forth to the hospital for labs this weekend so that Mel and I could travel to Houston to meet our twins for a great day of shopping for them. Also, to Debbie for coming in on Sunday to do more labs. Rebekah was our first nurse and she just took her last test to become a RN, congrats! Also she is on her 5th anniversary cruise and I hope she has a wonderful time with her hubby. Thank you to Debbie, Ashaunti and Tara(new relief nurse) who has taken up the slack! Hopefully, next week I can post something positive.

New Central Line


A girl and her best friend, her pacifier!

Loving all the attention

After my hair treatment...