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.

Our Life for Now....

I will begin by saying that much of what I speak of I am just learning. We still don't have many answers as test are still pending and probably won't have all the answers until we return to the GI doctor on June 30th. So some of these things I mention are just what has been said to us these past 3 weeks in the hospital. We actually just went for a GI follow up on May 25th. She had a swallow study and a gastric emptying scan done a few months prior to this appointment. We know she didn't do well on the swallow study but was going to find out results of the gastric emptying scan. Annabel has had problems on and off with abdominal distention and almost all her life with severe constipation. She had taken miralax the last three years and Laculose her first two years of life. Last summer she had a bowel resection and this provided good relief for probably 4 or 5 months. Then it seems that things were creeping back to her old ways. More distention, more discomfort and less and less calories. The gagging and retching had stopped after the resection but was becoming a larger problem. Dr. B had given us Zofran and that seemed like the answer for about 5 weeks. Then we noticed in the late afternoon like the dose wasn't holding her over. We have had a few ER visits as of late and every KUB(tummy xray) notes obstruction/ileus.

This brings us to the appt. on May 25th with GI. Annabel had been in much pain the last few days, we were down from 1000 cal. daily to about 400 cal if we were lucky. With this she was uncomfortable. You have to remember I use a pump and when someone tells me that she needs this schedule I am going to do all I can to pump that food into her. It was obvious something wasn't working from feedings, the bowel, to gagging and retching. We have always felt Annabel endures much pain and her pain threshold is very high. So the GI doctor could see upon our arrival that she was very uncomfortable and sent her for an xray. The KUB came back and we were told to return right away to his office. Again it showed obstruction/ileus and he looked back at her xrays. I asked then about the gastric emptying scan done a few months back and what the results were. It showed very delayed emptying and that she had motility issues. He admitted her then and placed her on IV. The diagnosis early on was pseudo-obstruction. It was described to me as all her food goes in, and it just sits there and backs up, very little stooling comes out except very watery smears. Then after days of this watery diarrhea, like 15-20 diapers daily. Each and every time they tried to put her back on feeds her tummy would become very distended. After maybe a week she was placed on TPN/Lipids. She had a PICC line placed to receive this nutrition. Her G button was switched to a GJ button in the hopes that if her stomach wouldn't accept the food then her small intestine would. Your small intestine takes in much small amounts of feeds so therefore she would now need to be fed continuously. The most she was able to take in was 19 mls/per hr. and then they had to discontinue this. She was many days just on TPN letting her tummy rest. Then we would begin again at 5mls. and she was never really able to tolerate more than about 12 hrs. For anyone who has mentioned that she must have lost a lot of weight, the answer is she was back up at discharged to the weight she was admitted with. The TPN has all your nutrition/vitamins/cal and the Lipid she is on also via the PICC line has your fats/calories also. (This is how I understand it, may not be totally right!)

The problems with the PICC line is you have to watch for many things, such as fever, infection, swelling, soreness, redness, etc. The morning after the PICC line she ran a fever above 104 so then you have to do several days worth of blood cultures. This line is placed in her upper right arm and ends just right above her heart. The last few days she had a motility workup. She was put to sleep for the endoscope and the colonoscopy. They also took several biopsies. Then they placed several tubes in her abdomen through her bottom. The next day she was hooked up to this machine that recorded pressures and functions from her colon, stomach, small intestines, bowels, etc. She was given a few meds at different times to stimulate motility, fed her formula to see how her body processed it, then given laxative to see what happened. This is the test that will take a couple weeks to compile all the findings of these two days. They are hoping that this study will indicate if this is a temporary issue (maybe just a bad virus or infection) or if this is a progressive type issue that we will need to deal with. We obviously hope this to be temporary due to the fact that the TPN isn't good for your liver. She does have to have blood drawn weekly and this is a blessing of this PICC line. No sticking her for her draw.

I will relay some of the findings but there is no plan of action/care as of yet. Her colon is very distended, microvilli is small/immature, small intestine is enlarged?, and her cecum is either twisted, malrotated, floating or permanently in the wrong place. Also some of the biopsies in her colon (I think) were in question. I will continue to patiently wait for the end of June for the answers.

The hardest part is that she is hooked to 3 pumps and then we having to vent her g-tube (stomach) 24 hours a day. I should have appreciated how easy it was just to pick up and go. Now I find myself untangling tubes most of the day. With all this new care for her we have two new nurses. They come into our home for 12 hrs. 7 days a week. They are very careful and both so sweet. They will attend school with her also. This will not take away the time her teachers are able to spend with her but will allow them to not do as much of the medical care that is now being required.

Annabel is happy and smiling. She is stressed more than usual and does some different things now. It makes me sad because I know it can't feel good. She is doing lots of hand wringing, seems to not be able to keep her legs as still, several times daily her eyes roll back in her head and she becomes stiff and shakes. She smiles as soon as we say Annabel, stop that!

Kourtni had plans to return to the orphanage for the month of June. Her aunt operates an orphanage there and Kourtni went last year. I was so lucky as was Annabel to have Kourtni here since September. I was able to take part in many things for the twins senior year. That was my goal with having help. Since Annabel will now require nursing, we will no longer be able to have Kourtni. My hope is that when we attend the SOFT conference that she will still see Annabel.

Thank you to all for the prayers and emails concerning Annabel. Life will continue just with a few more tubes and nurses in tow. Thank you to my family, Mel, Derek and Linzy, Tara and Tanya, Carly and Colette for bringing me the things we needed, visiting and playing with Annabel, Tyler for calling via Skype to talk with Annabel and myself, to Michele and Sophia for my Lenny subs and all the home cooked meals, and to Kevin for my turkey/dressing, to Hannah for washing my clothes and ironing Ananbel's gown, riding home with us and to Hannah and Matthew for fetching me food also. To all who called your support was very much appreciated.

Some really good new is that Tyler will be back stateside mid-late July and hopefully home late August. We are ready and I know he is ready to be back. Linzy and Derek's wedding is being held off until Tyler can return and we can all be together as family.