Are You Sitting Down???
Doesn't she look like "Mini Me" in this last photo...."Whooo-oo Haa-a-a-a-a!!"
Today was such a beautiful day! We had a meeting about Kayleigh and her new plan of action. Make sure you are sitting down. Are you ready....?
The plan of action has been confirmed for Kayleigh to go home very soon. We are looking about a month or six weeks out, maybe even less depending on how well she does with the upcoming tasks. There is not a whole lot left to do, but she can't have anymore setbacks along the way.
The next task ahead is for the doctors to insert a G-tube straight in to Kayleigh's belly. She has been trying to take a bottle and has not been too successful yet. They know it will take time, but they don't want to interrupt any developmental issues, so they are going to take out the last tube that is in her nose and put in the G-tube instead. The other tube in her nose was removed the other day for good since she no longer has any air on her belly that needs to be suctioned. The G-tube will allow Kayleigh to be on her regular feeding schedule and still be able to practice with the bottle. I can't wait to see her with no tubes on her face.
This surgery will be done next week sometime and she should recover very quick. They already took her off the continuous drip of Versed (Pain Med.), so they won't have to worry about weaning her off of that again. They will use another medication for her pain that can be stopped fairly quickly. Since being off the (Versad) pain medication completely, she is able to focus more and her eyes don't wonder around that much. Seeing her try to focus and her eyes cross is the cutest thing. They are doing an eye exam before she goes home to test her muscles in her eyes to see if the doctor needs to strengthen one over the other.
They are also weaning her off the Hydrocordizone that was used for reducing the inflammation on her lungs. Once they do that, they plan to remove the older central line out of her chest since the Flolan is the last of the medications she will be given through an IV. One by one they are starting to get rid of more lines and more meds, so she can come home on minimal items.
Right now, her feeds have been increased to 22ml's per hour and her caloric intake is at 25. She has blown up the last couple days. I know we just hit the 7 pound mark not too long ago, but she weighed in at 7 pounds - 6.2 ounces last night. It seems as if things have completely taken a turn for the better once she had her tracheotomy put in. Many of you said she would do that and you were right.
At the meeting, they told us that soon we will be training with some of the nurses for Kayleigh's home care and what to do in many different situations. We have already worked on changing the trach, but we have to train on changing the Flolan which is the scary part. There is a 3-5 minute window with that medication. If anything is pinching the line, or it is leaking, Kayleigh could go in to a hypertensive episode that could kill her. There is no room for error when taking care of our peanut.
So, needless to say, we need to be on top of our game when taking care of her at home. If our in-home nurse doesn't show up, we need to have all eyes on her 24/7 in case either the trach pops off or the Flolan is not working properly. It is enough to scare the mess out of you, but of course we will do what it takes to make sure she is home and safe. There are so many stories of how preemies just do ten times better once they're home, with growth and development.
This has been one exciting day for us and we are so pleased to see Kayleigh making leaps and bounds, especially after seeing her near death just a couple months ago. This was a day I thought was never going to get here, but it looks more promising now than ever before. To end today on a great note, Kayleigh started smiling again. You can her smile as Mommy was kissing her in the first photo and they came frequently as we played with her today. It melted my heart to see her so happy and this is such a blessing for us right now.
Thank you all so much for your support through this journey. Kayleigh has been an inspiration to so many and all we can ask is that you keep her in your prayers for next weeks surgery. We are not sure when it will be, but we will let you know. I wish everyone a wonderful weekend and please say a prayer for me as I have my final interview for my new job this weekend. If I get the position, I will be sure to clue you all in on the details.