3/4/09 - "To Do or Not To Do"



Kayleigh wanted me to share with you a photo of her smiling for the camera in her bouncy seat.

She is doing fabulous right now. The doctors decided to postpone her surgery until next week while they contemplate whether or not to do the Nissen surgery along with the G-tube surgery. We are not too happy about this because they tested for reflux before and the test came back negative for aspirates. However, they feel that it would be wise to do the Nissen surgery anyways since she "may" acquire reflux in the future and since she will be under anesthesia while getting the g-tube put in, they figured it would be easier for them to do it now.

Aimee and I are not too excited about that decision because we wouldn't want a procedure done that is not really needed and getting the Nissen done is more invasive and will only set her back further with recovery. "To do or Not to do, what is the answer?" - lol

For those who don't know what the Nissen is, it is where the doctors perform an incision and tack up the stomach wall so their is no horizontal section left of the stomach to allow food to be refluxed/aspirated in to the lungs. It is not a high risk procedure, but the whole problem is we didn't go down this road a while back because the tests came back showing negative for aspirates. I don't understand why it is so important for them to do it now. It just doesn't make sense.

Other than that, everything else is going wonderful. She has been supplemented with a higher calorie fortifier (30 calorie Similac Special Care). She has been tolerating it well and the reason they are doing this is because they had to put her on another low volume diuretic to help remove some fluid retention and would still like to see more growth. She has grown a lot lately, so I don't understand this either, but anykind of growth is better then none at all.

Something that is so amazing to both Aimee and I is how calm Kayleigh has been since she has been taken off her pain medication. Changing her trach, diapers and picking her up does not irritate her or upset her one bit. She loves it and surprisingly is relaxed more than ever before. Normally, a baby would be crying several times a day over the smallest things and Kayleigh isn't doing this one bit. I guess she is giving us a break from all the crying we have done over the past 8 months.

Thank you all so much for your comments. Aimee and I are beyond blessed by the support from so many. I hope I answered most of your questions, but here are a few more that have been asked.

Since I got this new job, will our house be saved? Unfortunately not, there is too much to catch up on with the amount of money that will be coming in.

Will the bank be sympathetic now that I have a job? Nope :( They don't care because we are still too far behind

What actions are we taking about the house? We are working with United Family Services to apply for a program that will either drop our interest rates dramatically, pay for us to get caught up or just prolong the foreclosure process to give us more time to make a little money to pay the upfront money/first months rent somewhere.

Have you signed up for SSI and Medicaid? This is in progress and we are waiting for them to contact us with our completed file to sit down for an appointment and confirm our information. They are slow :(

Is Kayleigh still on CPAP and how long will she need the trach? Yes, Kayleigh will go home on the CPAP and will have an in-home nurse for as long as she will have the trach. It could be a year, two or more. Since she is on low settings now, hopefully the bronchials will harden quicker and she can come off of it.

I think that was it, but if you have anymore, just email me and I will try to answer them as best as possible. Get ready for tomorrows "Thoughtful Thursdays" post. I was shocked that we received only 11 link posts this past week. I hope to see many many more of wonderful gestures this week that people are doing for others.

Also, if you have prayer requests, please email me and don't put them in the comment sections. I may not get to them right away, but I will try to be as quick as possible in posting them on my Twitter/Facebook accounts for everyone to see and pray. If you emailed me and I have been slow in getting back to you, I apologize. I have been overly busy with my new job ;)

Thank you everyone for all your thoughts and prayers.

God Bless,

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