Wednesday, April 24, 2013

We're Back!!!

Now two years old...big girl and sitting like a little lady!

Mama's big helper with her cooler of food and water...sitting at one of our favorite places...Mcalister's of course!

  Last but not unhappy girl on her happy birthday :(  on her 2nd Birthday
Well, I'm ashamed to say that I've taken so long to update a post but it's been eventful, to say the least. I'm just going to try to fill you in and hope it all flows together.
In March we headed to Orlando, Florida for a CT scan and to meet the doctor to discuss possible jaw surgeries, etc. As soon as we got there Selah started running a fever and became congested so we had to cancel the CT scan. It doesn't need to be done with sedation if there's any concerns of sickness, fever, etc. We still met with the doctor and got to see the new hospital. We were impressed on all accounts! The hospital, Nemour's, is clean, in a beautiful location, and had a knowledgeable and friendly staff. The doctor himself was knowledgeable, compassionate, and just had a wonderful bedside manner. He discussed our options and kind of a "big picture" plan and was so positive. He didn't assume that we knew everything already and he just laid it all out and gave us more information than we received from anyone, specific to her jaw surgeries, options, etc. It was such a blessing to meet him and Spencer and I both felt a peace that this is probably the best location for us to receive care and surgeries for Selah. The first step though is to have the CT scan of her facial bones and jaw done and then to have our ENT do a procedure to get some images and information about what all is going on with the anatomy of her nasal and oral cavities and her airway. We planned to just reschedule her CT scan and other procedure at one of our local hospitals once she got to feeling better and we set off on our trip home.
Her congestion and fever had gotten worse over the course of the trip in Florida. On the day we were traveling home she got progressively worse and her breathing became very labored, her respirations were too fast, and she became basically unresponsive. We debated on what to do and what out of state hospital to stop at. We made it to the children's hospital in Mobile and she was admitted for several days. They treated her for pneumonia and a trach infection. She got progressively worse so fast and was a sick little girl. It's such a helpless feeling to see her struggling for breaths and not being able to do anything...other than claim God's mighty hand over her. Faithful prayers were being lifted up from many, which is so humbling, and Selah got to feeling better. We came home after a little bit in the hospital and it never felt so good to be in our "sanitary" environment again, ha.
So, we got home and have been trying to keep Selah healthy. We started back to therapy and started back to church and just eased back into our routine. I also rescheduled her scan and procedures for about a month out, to ensure she had recovered. But, last week she started again with a runny nose, chest congestion, thick and discolored secretions, and a fever. I knew it was back...the pneumonia and trach infection. The doctor, trach culture, and chest xray confirmed it. It never really went away and I guess this is a relapse. She is getting an antibiotic and breathing treatments with meds to inhale through it also. We also have oxygen here that we hook up for her when she needs it. This time we caught it in the earlier stages and thankfully she's been able to be at home to recover. The faithful prayers, yet again, are being answered.
And, the CT scan and ENT procedures, both with sedation, will just have to be put off until she's fully recovered and it's safe to proceed with them. These are both a vital part of the planning of what, when, how, etc. for her surgeries and it does seem like yet another delay. But, I'm at peace with it and do believe God is working. Now I'm not saying I understand it, at all, but I do know He is orchestrating it all. We're getting to enjoy her at home and seeing her grow and develop her own personality and just geeing to love on her...sweet Selah!
I also need to add that during our consult with the FL doctor, he said that it was a miracle that she hadn't been operated on several times already. He meant that it's wonderful she hasn't been because there's not an abundance of scar tissue to work with and that it means there are options for us to consider the best treatment and timeline for her. It was so reassuring to hear this. God used that doctor's words to audibly reassure the unspoken concerns and doubts in my's all working out according to God's plans and in His timing...the delays, the open and closed doors, the sicknesses, all of's all according to His sovereign plan...
Thanks SO much for sticking with us and this blog! I really will try to be back soon! Post me some comments, just a little harassment, to keep me on my toes and to remind me to do it, ha. Truly, thank you for your continued support! We send big hugs!!