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...


Laurie in Ca. said...

Oh Cathy, nothing about this post is whiny sweetie. I don't know how you do this without falling apart. It sounds so stressful and I am feeling it here as I read it. I am praying for you and the tough decisions you need to make. Thanking God for the wonderful children you and Mel raised. They are jewels for sure. I love you and you can unload your stress whenever you want:) We are here to share your burdens.

Love and Hugs, Laurie

PS. Connie is on my mind and heart so much these days and I am praying for her so much.

connie said...

You know you aren't whining. Don't worry. I'll tell you, it's really too late when I am reading this, and I almost didn't ... but then I realized you might be confessing something ... and I thought, oh, I KNOW she isn't going to confess it here on the blog!!

Whew. :)

Mrs Redboots (Annabel Smyth) said...

Poor Cathy - it is so not easy! You are wonderful - I'm sure I could never do what you do and keep sane and patient.

Kathy said...

I just hate to read of all these issues that Princess Annabel and you have to deal with. Not bad enough that you have to handle and decide issues for your sweet girl but I am so sorry for the medical ineptitude you come seem to come across more than your share!

Teaching hospitals are just like that. Too big. Too many "cooks in the kitchen."

You weren't at all short with the staff when you demanded action and thank the Lord finally (!) someone who really knew what was going on came to the rescue.

This post was not whining. We are all your friends and prayer warriors so bring it on sweetie! We can handle it!

I am just blown away by all that you do, manage and deal with. Our precious girl is in such capable hands! You are an amazing Momma and wonderful advocate for Annabel. May the Lord continue to bless you and give you His strength, courage and wisdom. He has all ready given you a really big, loving heart.

Praying for a quick recovery with no further issues with this line. Praying her TPN does NO permanent damage to her liver. Praying she gets her sparkle back in her eyes soon. She is such a strong and brave little one.

Love you girls!!!

Lissa Gressley said...

Do you guys use spiral tubing on her TPN? We use it for Hannah's TPN, it hooks to her broviac and then we flag the end nearest the pump with tape and then pin it under her shirt so that there is alot of give before her line gets pulled. Just an idea, haven't had a line just break but have had her bite through it once and they just repaired it. I hope you guys find some peace and a great balance with Bella and her TPN.

Ashley said...


This is a very hard life to live. I understand how easy it is to blame yourself for the pulling of the picc line, but I don't want you to. Picc lines are temporary. They are designed to be so. 6 months is an amazing length of time to keep a picc "happy" and in place. You did an incredible job with that line. Incredible!

The TPN dependency is a very hard thing for me to wrap my mind around again. Its hard for all of us moms who so desperately want the normal act of feedings to take place for our girls. Your feelings are so valid. I have them too. Central lines do break. Its scary, so very scary knowing the danger of having them leading directly into their bloodstreams. I'm so sorry this happened. The stress of that situation is so unbearable. Truly it is.

I just want to encourage you. I understand your feelings. I have them. I understand the stress. I really get it. What I want you to know today is that YOU are an amazing mom to Annabel and an amazing caregiver. No one loves that little girl the way that you do. God chose you. What an honor!

Hang in there my dear friend. I think of you often. If I can help in anyway please don't hesitate to let me know. Sincerely, Trish

Cathy said...

Lisa if you read this please contact me via email. I want to ask you about the spiral tubing. Thank you for taking the time to write. Also, to Laurie, Connie, Trish, Annabel and Kathy your words help so much. I like to think I am strong but really lately I am not. I question my judgement more than I ever have but I do feel on my good days that I know what is best for Bella.