1/3/09 - Great Start!!!
These were a couple photos that I took over the last two days. Don't you just love her ear muffs?!?!
First and foremost, I am loving Twitter so you all can get the updates on the blog and Facebook on a regular basis. I will still continue to update the blog every couple days, but mainly to recap and show photos. If you haven't joined up, go to the right tool bar to follow the daily updates by reading along or getting text messages to your phone
This has been an awesome start to a brand new year. The year 2008 is over with and hopefully so is all the drama that came with it. Kayleigh continues to surprise us all with her strength as she tackles these issues like a champ. Just the other day, she was having another hypertensive episode that was so intense, her heart rate was dropping because it could not keep up with the massive amounts of pressure coming from her lungs. Falling deeper and deeper in to trouble caused the doctors cancel the jg-tube procedure, but we all know who really didn't want that procedure to happen. It is by miracle she didn't go through with it because her little body might not have made it through.
Thank goodness it was cancelled as she is doing better now than she was prior to her nasty episode. In fact, the doctors are thinking about not even completing the jg-tube procedure in the future after gaining pertinent information from the CT-scan that was performed yesterday. Kayleigh lungs have made significant improvement after the pneumonia and her previous x-ray that showed more left sided lung deflation. The doctors feel that if there are any signs of issues that could be caused by mircro aspirates/reflux, they may consider doing the jg-tube later. But for now, she has a tube that goes through her nose, past her stomach and in to her intestines. She is currently on 6 mls an hour, continuously and tolerating them very well.
Yesterday was a very stressful day as the CT-scan procedure was pushed back twice and the fear of Kayleigh falling in to another pit of hypertension. It took 6 people to transfer her down successfully and I don't think any of them took a breath until she was back at her bedside safe and sound. She made it through the scan with flying colors and is continuing to make unbelievable progress. The scan showed a couple blemishes which were left over from the pneumonia, but nothing out of the ordinary that concerned them.
Kayleigh is currently on very low vent settings and the doctors are talking about extubating her in a few days if she continues to do well. It just amazes us to see how quickly she can bounce back from facing death one week to feeling as great as she is right now. She is still irritable, but no where near where she was and each day that passes by, you can see the difference. Last week she would desat at the sound of a pin drop and this week, she is wide awake, practically off all of her pain medication and will barely drop her sats at all. God is certainly in control of this little girl and to see the miracles that are performed day in and day out are beyond any experience I will ever face again. If you think this blog has been exciting, you should have seen this first hand :)
So as of right now, we have gotten all the information to send to CHOP (Children's Hospital of Philadelphia). They want all the information from her files and tests, so they can see what has been done and if there is anything they can do differently from here on out. If they feel they can offer something our children's hospital can't, then we will figure out a way to get her up there as quick as possible. Another major concern is if she will be able to handle the transfer. She will have to be heavily sedated/paralyzed for several hours as the helicopter ride can be very dangerous for her with this pulmonary hypertension. Our doctors have been consulting CHOP all along, so hopefully we can continue to stick it out here and not risk hurting Kayleigh in a transfer or uprooting our family. We do have family in Philly who have been gracious enough to open their homes to us if we go! God Bless our awesome family!!!
For most of you who didn't know, I grew up of Jewish faith, but became a Christian several years back. Every year my side of the family gets together for a weekend to celebrate Hanukkah and New Years. I can't believe it has been a year already, but last year at this time Aimee and I were hoping to surprise our family with a positive pregnancy test. It came a couple days later, but it still feels like forever ago. We have had an amazing time this weekend with both of my brothers and their family coming in from out of town. It is a house full with all the kids, but it is a blessing to enjoy family time and laugh away all our stress. It was most definitely a well needed weekend for Aimee and I. We are so blessed to have a tight knit family who loves each other unconditionally. We love you all so much!
Here are some photos of our amazing time together:
The Freemans :)