I talked to the plastic surgeon this afternoon and he expressed his disappointment too that the skin graft did not work. Her wound vac had stopped working Wednesday morning but the wound team was here and able to fix it. It stopped working again last night around 6:00p.m. and the wound team had gone home and the nurses have not ever been trained on how to fix them. At the time, the nurse called the wound team with no answer and called the plastic surgeon's office and talked to the resident there and they said they would pass the information along in the morning. The doctor thinks that this is why the graft did not take, because the suction stopped working. This information almost made it worse. To know that the failure was because the wound vac clogged, stopped working and there was no one around to fix it? Very frustrating! The doctor did say that the wound seemed to be healing quite nicely on its own and that he thinks it will continue to improve on the wound vac for another couple of weeks. Also, Dr. Kouretas has given the ok on going home with the wound vac, they are just working to get it approved through my insurance.
About her feedings, she is doing really well on bolus feeds. They are feeding her for an hour and ten minutes every two hours and she is tolerating it really well. They might try and and go down to feeding her for an hour every two hours tonight. The goal is to feed her every three hours for 30-45 minutes but some kids just don't get to that point, we will have to wait and see with her. She has not thrown up at all today and has only thrown up twice since they started feeding her through her stomach which has been about 28 hours now. She is surprising everybody. Speech therapy came by and worked with her quite a bit. She gave me lots of tips on how to work with her to prepare her to take a bottle. It is going to be a long and slow process but that's ok. She even smiled at me and the speech therapist during our session. She is getting so cute and acting more and more like a normal baby. Gracie is going to stay in the PICU again tonight with hopes of moving tomorrow. They currently don't have any available beds up there so she gets to hang out down here again. Another night of 8 hours of sleep!! I will probably post again tomorrow, thanks!!
7 comments:
Michele, I am going back on my decision to not take up your time with my comments. However, I want you to know how sorry we are that the skin graft did not work. We will be glad to remember Gracie in our fast this Sunday. I also put her name in the temple again last night. God Bless
I just want pass along this little moment I just had with my kids. We were sitting at the counter eating our Panda Express dinner (slacker Mom). I was telling them that you asked that we fast for Gracie on Sunday. We all agreed that was something we could do. When Taylor finished her dinner she broke open her fortune cookie. The fortune read "you will soon witness a miracle" She said ,"Hey this one is for Gracie!" We have put it up on our magnet board in the kitchen to be a reminder for us. This is just one of many testimony moments I have had with my kids through your experience. It may seem selfish to say, but thank you for allowing my children to know that miracles happen. Love - Amy
Wow! This week has been full of ups and downs! I am glad you are able to rest though. Hopefully next week will be great with the possibility of coming home getting more and more real!! Hang in there, we love you guys!
Kristin
I love that she is smiling at you! She is so sweet. I'm sorry that things have not gone so great with the graft. Today my friend that looks at your blog mentioned that her sister had also mentioned checking on baby Gracie's blog. Both of them found your blog through surfring around on other peoples blogs. Gracie is loved by so many strangers. My friend said that you guys seem to have such a neat family! Gracie is so blessed!
Sorry with all the frustration! What a cutie! I am glad that they are working with her, so that hopefully she will be able to take a bottle. We have so some friends who have a daughter with Greater Transpotion of the Arteries. She never how to suck but then they never really tried to get her too. Your in our family prayers.
I have been out of the country for a week. As I have reviewed your posts I see you have had a lot of ups and downs. I also saw that you are asking for fasts tomorrow. I would love to make her the purpose of our fast tomorrow. We will think of you guys and hope this next week is a little more calm and quiet.
We'll definately be fasting tomorrow!!
The Peterson's
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