Okay, today was a busy day and my head is spinning in a million different directions. Aimee and I have been faced with a tough decision, but we feel God is leading us in the right direction.
We sat down with one of our neonatologists, our cardiologist NP, our primary nurse and a couple other NP's and discussed a new medication that will take place of Kayleigh's Flolan, which treats her Pulmonary Hypertension. The name of the medication is called Remodulin. Unlike the Flolan's three to five minute window in case something goes wrong with the central line, the Remodulin has a four hour window to fix the line. This will help us stay a little more calm when she comes home and we can get to the hospital in time if there is an emergency.
Now here is where we need your prayers. Beyond the new medication CHOP (Children's Hospital of Philadelphia) mentioned, the main doctor there said they complete the Nissen procedure on all of their pulmonary hypertension neonates. We mentioned before that if Kayleigh does not have reflux or and aspiration problems, then we don't need to do it. But, no one mentioned that if Kayleigh develops reflux down the road that the aspirations can tear down her lung tissue, that may cause Kayleigh to need a lung transplant.
We thought about these last couple weeks and how everywhere we turned, someone was talking about Kayleigh needing the Nissen procedure. Now when her belly blew up to cancel the procedure the other day and now a hypertension specialist mentions the Nissen procedure, we feel that God is telling us something. So, we feel it is in Kayleigh's best interest to go through with the Nissen procedure, risking the negative issues of the procedure that will occur upfront, just to prevent a bigger issue (lung deterioration/lung transplant) down the road. We completely trust that God is leading us in the right direction.
Since Kayleigh is going to have the Nissen procedure done, she will get the g-tube placement instead of the PEG. The reason for this is because Kayleigh will have to have a three inch incision for the Nissen and they will just do the more invasive g-tube procedure at that point since she will be already open. It doesn't make sense to do the PEG microscopically when they will have her already opened up.
Tomorrow morning, they are going to complete the biopsy to either determine or rule out Hirschsprung's disease. If we get the results back the same day, the doctors will complete the procedure on Monday. If they don't get the results back, they will be doing the procedure on Tuesday. Here is where we need your prayers the most. If Kayleigh's biopsy comes back positive for Hirschsprungs, they plan to complete a colostomy surgery and they will do this next week when they do the Nissen and G-tube procedure, pushing the bilateral hernia repair to a future time. That may mean we will have to stay in longer to recover and to wait for a future surgery to repair the hernia's.
AHHHHH! This is enough to drive someone insane, but we are being strong and praying that everything is working the way it is supposed to. Poor Kayleigh has been through so much and just when you think she is getting close, more things seem to pop up in the way. We just need your prayers that these procedures are the last of it. I really feel we are close to getting her home and we need to all pull together and pray our hearts out.
Thank you all for being there for us through thick and thin, but we need you all now more than ever before. Please pray that Kayleigh does not have Hirschsprungs or anything major that may cause her to have another procedure. Pray we can tackle the Nissen, G-tube and Hernia procedures and get her out of there. She was so precious smiling and playing with her rattle today. I am so tired of seeing her sick and recovering from yet another procedure. It is time to bring her home, so please pray hard with me this is the end of the NICU journey and our new life can begin at home.
We love you all!
God Bless,
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