Did I say "thankful" for TPN????

Her is my skinny minny sweet Annabel. In less than a month she has gone from 33lbs. down to 29.2 lbs. I can't even remember dates any more or exactly when things occurred. She was removed from TPN in the later part of February when she was at TCH for yeast. My wish has always been for her to come off of TPN. The most pressing reason is that she had become septic 2 times in 2 months. The other reason being her liver and the effects the TPN/Liver has had since June, 2010. While she was hospitalized in February at TCH they made a really big push for food. They wanted her on Pediatric Compleat for the calories saying that she couldn't get enough from the breastmilk. I agreed to try the Pediatric Compleat again but only if it was 1/2 breast milk and 1/2 Compleat. It was too much too fast and even though I was skeptical I needed to let Annabel's body tell the doctors. Of course early March we ended up dehydrated because she couldn't stay on the compleat as it was tearing her gut up. While at the ER they learned our new PICC line wasn't working properly so we were admitted, line removed, femoral line place and then a few days later new picc line inserted and released.
We had our appt. in Houston with GI. I was so ready to beg to get back on the TPN as to I could see her little body weak and frail. Her arms and legs were so thin and her face seemed so tiny. Her coloring was pale and she just didn't have the energy. We were having to go easy on the feeds again and I would only agree to begin the breast milk.
Just recently Annabel was on the vancamycin for her UTI and the Fluconazol for the Yeast. Within five days of finishing the vancamycin her culture grew another bacteria so Dr. B placed her on Bactrim which for a couple days appeared to be clearing the urine. On Tuesday Annabel began running a fever not too much over 101. She was also beginning with a cough and a wet nose so we just thought she was getting a cold assuming the UTI was being taken care of by the Bactrim. By Wednesday morning her urine was having troubling coming through the catheter and she was vomiting. We were suppose to see Dr. B for follow up from the hospital the next day but opted to call for appt. on Wednesday. It was found Annabel's urine was worse and she needed to be on IV antibiotics again. A culture was drawn and sent off and should have results Monday. Dr. B is guessing the bacteria that she was on the vancamycin for is back/or not clear from the round of vanc. It is getting so frustrating with these UTI's but anyone who has followed us before know we have been here before.
So with all this said I find myself rejoicing in the TPN/Lipids running through her veins once again. Just since being placed on it this week I can see the weight returning and her energy returning. Yes, we are still giving her the breast milk and will continue. Annabel is going on 9 weeks of breastmilk and not having to take any laxatives/enemas. This is another blessing to us. When she is placed on laxative her gut swells so big.
I haven't written recently due to the fact that I feel like a broken record. I don't want to complain because Annabel is still so happy. We wish she were free of pain but I am thankful that her time of pain seems to be limited and quickly resolved. I don't know what the answer is to the excess of antibiotics. I know she needs to stay off but the option is pain for her/or the possibility of becoming septic having this central line is tough. We realize with the many antibiotics the risk for yeast to occur again.
There is so much I am thankful for at this time. I have help (nurses) during the days and also three nights a week. I have found that 3 good nights of sleep get me through my week. I know without a doubt when I am up the other nights that I will have a reprieve for 3 other nights.
I am thankful for Dr. B and her patience and understanding of Annabel and her journey (of course, patience with her crazy momma) and Dr. C in Houston who continues to try to figure out Annabel and her gut issues. I am so thankful for my family who loves Annabel and comes to see her each day. She truly is the sunshine in each one of our days!
P.S. There has been some true Angel's who have/are providing Annabel with some much needed breast milk. The milk bank is critically low and we have not been able to receive much milk from them. I won't mention names of the donors in case they don't want to be mentioned but please know that each time I open a fresh bag I am thinking and praying for you and your child.

PICC line tomorrow...

We didn't make the cut for today to have her PICC line put in, so we are definitely on the schedule for tomorrow. We opted for the PICC line due to she would only need conscious sedation and not have to undergo general anesthesia again so soon. The other possible good news is that she may not be going home on TPN at all. This is an answered prayer! She is basically tolerating the feeds as well as can be expected. She has some discomfort, but she was uncomfortable on the TPN for other reasons. They risk for Annabel are so high to have another central line. Yes, the PICC is a risk also but we are hoping that putting this in will let us go home and finish the two antibiotics she is on, give us time to make sure her feeding will work without having to get back on TPN.
With all this said, we want to thank everyone for all their prayers and offering to do things for us. Annabel and my family have some faithful prayer warriors working overtime for sweet Annabel. Also, praises and thanksgiving for Annabel coming through this blood infection once again. The doctor is quick to remind us that she may not be so lucky the next time. We know that their is only one person who know that, He is the Almighty Physician!
I will close with some pictures from today. One of them where she is wearing her beaded necklaces that her sisters each made, she is tired. She is still weak from the infection and last time it took several weeks for her to fully recover.
The other pictures with the little stuffed dog and the ball are amazing to us. Annabel hasn't really ever wanted to play or hold much of anything in her hand except for her pacifier. But lately she reaches (even with both hands), holds, tugs at things. I have enjoyed just sitting here the last couple days with such enjoyment that she can play and entertain herself with her toys.

Annabel's New Room

Yeast free and full of life, Annabel is definitely ready to get home to her new room! She has a new friend that was kind enough to use her talents to transform Annabel's room into a collage of colors and life. Ashley took bare white walls and turned them into a playful area that Annabel loves to hangout in. Below are photos of Annabel with her special friend and her new room. We are thankful to have people like Ashley in our lives that are able to bring a smile to Annabel's face.

























UPDATE:
Well, the team made their rounds tonight and have scheduled for her to get a PICC line tomorrow. This is not for certain that it will happen. From what I understand, it places us in line to be scheduled for tomorrow depending on how many other procedures are ahead of her. We are going to continue working on the feeds in hope that she will tolerate the volume in her stomach. The necessary staff will begin to get her meds, antibiotics, formulas, supplies, and equipment setup from the different companies so that we can finish the antibiotics from home. If all goes well, we should be able to head home by Wednesday at the earliest. Thank you all for your prayers. They continue to carry Annabel through these nasty infections and terrible antibiotics. Thanks to all the doctors and nurses back home and here in Houston who continue to work with me and look outside the box for solutions and not get discouraged.

Best day yet...

We are so thankful and grateful for today. Annabel seems to be tolerating her feeding right now. I don't want to get too excited as she has tolerated before then her tummy has rebelled. She is having 35mls of breast milk and 35 mls. of Pediatric Compleat mixed together. Today is the first day to have 5 feeds beginning at 6 a.m. and every 3 hours until she has had 5 feeds. We are feeding these by pump over a 30 minute time frame. Then we rest her tummy for 3 hours. She will then be fed on continuous feedings from 8p.m.until 4p.m. at 40mls. per hour. This is really a big jump for Annabel. Her tummy is larger (of course) but she isn't retching/gagging as of yet. They were able to turn down her iv drip today because she is having enough liquids. Yea!
Next, if today's cultures come back clean then she will be able to get off the amphro-B, that is the antibiotic that is very hard on her body. Her blood pressure begin dropping shortly after being placed on it. They are monitoring her continuously while on the amphro-b. If tomorrow the cultures are clean she will go back on the diflucan (antibiotic) and we can go home on this by IV antibiotic. YEA! She will have to be on this until the 29th of February.
Also, she will have to be on the vancamycin until February 25th. They have great concerns that Annabel can become vanc resistant. This bug is not responding to anything else, except furodantin but Annabel cannot tolerate this at all.
Annabel's echo that was done yesterday show no yeast growing on the valves in her heart. Yea!
She will have to have an eye exam before going home but they said they will round and do that by Tuesday, this is just precautionary.
The hope is that she will get her PICC line by Monday, latest Tuesday. OK, I wanted to go home with no line. This is probably not realistic, my goal now is to only do TPN at night. I am praying that she will be able to get enough calories via g-tube during the day. I am also praying that eventually she will be able to tolerate the volume to drop the TPN in the next few months. YEA!


According to the infection disease doctor the yeast that is getting Annabel each time is a whimpy bug. She said we all have it but it just gets a hold of Annabel due to her being on so many antibiotic for UTI's. One of the reason I am wanting the PICC line is that she didn't have any infections with this type of line and also that she won't have to undergo surgery again at this time.
I have to begin cathing her religiously again. I struggle with this because when her bladder works I want her to go by herself. The reality is that anything (even tiny amounts) left in her bladder is not good. There is good reason in both ways of thinking according to the doctor but not for Annabel's body.
I am really excited because word is getting out about Annabel and how well breast milk works for her. She hasn't needed any type of help via laxative, enema,etc. I feel due to the breastmilk. Our milkbank in Austin is so low they haven't been able to supply Annabel and I want to be patient and wait but I feel I can't if we are to be off this TPN. Also, I have always felt that there are so many benefits to the healing properties in breastmilk. So I will close with many praises for all this is being done for Annabel. Thank you so much to all for their thoughts and prayers for Annabel.
The plan is that if all goes perfectly, nothing unexpected, we will probably be home by Wednesday. When we first arrived when had some issues that made it seem like this admission was possibly going to be like the one in December. After maybe the 3rd day and us almost getting bumped from surgery to remove her line, due to a residents communication with another resident, I decided to get brave and call a meeting. I told them I wanted everything to run smoothly and that none of us wanted conflict. I felt if we all communicated with each other clearly, also I wanted copies of all labs and test results, and to respect each others thoughts and concerns. This has been a much nicer hospital stay. We will continue to use our home hospital and they will do all they can to treat us there, but when we have to be transferred for more serious issues I probably won't dread it quite as much. Another thing to add Praise for is all the doctors here. YEA!

A picture that says so much from today....

Today was the day I decided to say even though you are the doctor, I am the mother and sometimes I feel I know what is best for Annabel. They came in with their plan and I listened. I told them I understood that was their plan for the long term but that I wanted to focus on getting Annabel well in the short term and healing her gut the best way possible with the long term in mind. They kept telling me their ultimate goal was to see if she could come off TPN/Lipids and again I understood. But then I ask to speak and started with the fact that I am not medically trained or educated but that my gut is feeling like we need to stop TPN today, as in now. Before when Annabel was sick they would put her on IV's for hydration and she would be on that till she was well enough to eat. Sometimes she wouldn't eat very much, but she survived and eventually ate more. So yesterday after surgery again they began the feeds (20mls. breastmilk and 20 mls. pediatric compleat) every 3 hours including through the night. She shows some signs of discomfort but I am interpreting them as just fullness maybe that she isn't use to. She has not begun the retching/gagging that lead us to not feed and began the TPN dependant phase of her life. Now Annabel has been vomiting until yesterday but felt that was the infection/after surgery thing. So all night no gagging/retching and nothing when she is vented. So every 3 hrs. we give her a feed over a 20 minute time frame. Today they upped this to 30 mls. breastmilk/30 mls pediatric compleat over 30 minute period every three hours. Her tummy is obviously bigger than before but she doesn't seem that uncomfortable. Her fevers today are 100.4 and now down to 99.0.
There still are no sensitivities to the yeast as of yet. She has one clear culture but they can't really call it clear til there is no growth for like 72 hours or more, but I am going with it and calling this one day closer to going home.
My thinking about the TPN dependant vs. the feeds are that yes, she may have some issues with being comfortable with the feedings but with the central line she may not survive another infection according to the doctors. I realize yeast is serious but she pulls through each time. She may continue to fight these infections but I don't want to risk it any longer. Also her in the hospital they can't put her a central/PICC line as long as yeast is growing in her body. The TPN/lipids is eating away at every IV they put in so for now I requested take her off, just give regular IV liquids and push through with the feedings.
She slept forever this morning and we were a little concerned could she be getting sicker, but she awoke we bathed and then we took her to the playroom. We took her for a few spins in the car and she smiled so much (maybe not for the picture, but trust me she is so much better than this past week.
Thank you, thank you for your prayers. So many people are pulling for Bella and sending prayers her way. Thank you isn't enough but please don't stop for the new plan to really not go back on TPN. My thinking is that if this doesn't work and we have to then we can put a central line back in. But for now I am not saying we are TPN depandant and it feels so good.

Out of surgery...

The doctor just came by and said she did ok and they were taking her to recovery. We are waiting to go back to see her. Will update later when possible.

Take it out...

We have got to take the line out soon. They have her scheduled for tomorrow to remove the line. Tonight her fever is rising. T this point it is 104. They are allowing one more dose of Tylenol then nothing else. The can't give motrin due to bleeding. She is vomiting continuously since 6:00 and liver levels rising. They are fairly sure this is all due to yeast.
Thank you to those that have commented, the many text and emails. There have also been calls but I couldn't answer most of them due to doctors in and out and taking care of Bella.
Your words and prayers carry us through. God continue to take care of her for that we are sure. Will try to post more later about today's game plan.

Cultures back...septic again

We have been transferred to Houston and I must say it has been a long day. I am so frustrated and this is only day one in Houston. I am lucky that my daughter is here with me and will heip for a few days. We knew last night that her line tested very quick for yeast. Today the yeast is growing in her precious body. I am not crazy about this central line but in just two months we have had 2 yeast infections growing in the blood/line. My crazy head wants this pulled and not another one put in. But realistically she couldn't get enough nutrition to survive. So now we wait for the 3rd group of people to come try for blood for the 10th stick.

What is happening here?

No one is really sure what is happening. Annabel has basically been infected with something showing up in her urine since the beginning of January. She has been on IV's a few times and one on two antibiotic in tube then this past Thursday finished another one. So this past Tuesday when we were doing her labs we did a urine culture just to be sure. We thought she was fine. So Friday we got her urine culture back and here was the same bacteria as bad as it had been. By Saturday she didn't look well. She looked weak, vomiting little amounts of bile and with a fever that just grew as the day passed. We continued the Vanc. I was up all night watching due to the fever, vomiting, low oxygen levels. I knew we should have come during the night but since on Vanamycin felt we could try to manage at home. The vomiting worsened and the fevers were harder to keep down so I called the ER and was told a good time to bring her in. When she was placed in a room immediately she wasn't responding at all and you could only see the whites of her eyes. No matter how many times I called her name she didn't respond. As soon as the fevers came down she began to open her eyes. We on occasion were able to get a weak smile. So tonight she continues to shake when her fevers began going up and she vomits what little that is in her belly. They have switched to suppositories for fever and also for nausea. At this point the doctor (ER) is suspicious of the central line. They tested for flu, pneumonia, UTI, and her blood. They did ultrasound for some type of peri (something)abscess. This would be where the kidney is nestled in her abdomen. They say this would be rare if found to have it. If she is found to have this type of absess or if the central line is the issue we would have to transfer to Houston. We are praying that this new added antibiotic will do the trick. As she lays here with her eyes closed she squeezes them tight as if in pain but is silent. Her breathing is fast as is her heart rate as I am sure due to fevers. Please continue offering her up in prayer and that something will soon be know.

UPDATE: Her central line blood culture that was just drawn 10 hours ago is already growing YEAST. If anyone remembers back in December this is what happened and we were transferred to Houston. They are calling doctor now. Please, please pray!!!! The bug (fungus) is terrible and the antibiotic is considered lethal.