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!