Four weeks ago last night we headed to Cook Children's Hospital where all this started. Well last, we returned to the ER at Cook's. I had accidentally got Jackson's central line caught between me and the car seat, and it pulled apart. Not completely apart, but after a phone call to the after hours home health nurse, we decided it was compromised enough to warrent a trip to the ER. So at 8:30pm we headed to Ft. Worth. They were able to repair the line, and the nurse assured me it was not the first time this has happened. But you can imagine the guilt I am carrying. Praise God we did not need surgery or anything evasive to fix it.
We had our first of many follow-up appointments this morning. The appointment was with the neurosurgeon. After spending 1 1/2 hours in the waiting room, just like I thought, he spent 10 minutes telling us everything looked good and then could not answer the few questions I had. Very frustrating. My family has nicked named him Dr Don't Know. That is his answer for everything. I would be happy with some lame round-about answer, instead of "Don't Know".
We have some awesome friends that live in Ft Worth that I called at 8:30 last night asking for a place to stay. We didn't know how long the ER would take last night and our dr. appt. this morning was at 8am. To keep us from making two trips we stayed with them. Like Motel 6,They left a light on for us. Thank you Patterson's!
We had a rough afternoon. Our first experience with throw in the crib and then on the floor in his room. Not sure what that is all about, we are praying it was just an upset tummy, not a sign of something more serious going on.
We have made 2 trips to our pediatrician this week. Jackson broke out in a bad rash over the weekend. We changed his seizure med, but the rash got worse. The ER dr. said rashes are common with kids with compromised immune systems. It seems to be calming down, but it is still not pretty.
Well, that is our week so far. We are doing better with the oral meds. Sleeping is still sporadic. We finally have our first tooth on the bottom poking through. No pics of that yet, he still doesn't like people close to his mouth. Please continue to pray for his healing, our sleep and patience.
3 comments:
Oh Mel...so sorry to hear about the tough time you've been having the past couple of days. Hang in there, you are strong, you can handle all of this - your faith is strong and you have so many people in your family's corner.
Please let me know if there is ANYTHING we can do for you guys, day or night, we are here!
Love you!
Hang in there, God will provide answers. You are such a great example of God's light.
hey there...we were really looking forward to bringing you guys a meal tonight. however, my youngest has had a stomach virus off and on all weekend, so preparing a meal for you guys might not be wise at this time.
i am so sorry! i'll sign up for a later date. hope things are going well!
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