Howdy all!! Aunt Beth here. We know that there are many of you want to know the updates of what is going on. We are trying to get Timmy regulated in meds, hydration and rest. Timmy is hooked up to (depending on the moment) NG-tube, monitors for heart rate and oxygen in the blood, IVs... Lara is doing a great job talking to the nurses, speech therapists, occupational therapists, doctors and visitors coming to encourage Timmy & her & Marshall. It’s a lot to keep up with. When I first arrived, we were trying to figure out if Timmy was continuing with seizures, or if the medications given were working. After having an EEG test that shows the brain waves, they determined that he is not having seizures anymore. There are times that Timmy arches his back and stiffens his body, but we think now that it is reflux and not seizures (as we thought that it could be).
There are a variety of daily activities we can count on. The nurses switch from 6:30 to 7:30 in the morning & again at night. We are out of the room for those times, so those are the times Lara can catch a shower or food -- depending on what has or hasn't happened. The nurses I have talked with have been helping explain what they are doing and the goals of the day -- not vomiting, keeping the IVs in, watching for seizures and food intake, and paging doctors for various orders needed. The newest possible need may be a PICC line. Basically this IV would be inserted down closer to the heart, and the need to keep poking Timmy would be lessened. The order for the PICC line was put in too late in the day for it to be done today, but we are hoping for tomorrow.
Update from Marshall on July 21: I've updated the post to clarify some things. In particular, it's an NG-tube, not a G-tube as was previously posted. Timmy has not had any surgery yet.
7 comments:
Thanks for the details. It is helpful in knowing what great care Timmy is getting and how everyone is holding up. If you need me to come, just let me know. Love and kisses to all.
Beth, I'm glad you could be there to help give Lara some rest during the day. It is a "straight up" learning curve at this point, and so I really appreciate having all the information. We'll be there in three weeks to celebrate Timmy's first birthday (!) and also help alleviate some of the strain, I hope. Love you guys!
Hi you guys. Sounds like Aunt Booth is doing a great job as press secretary...might be an opening for you at the White House. I'm thankful the seizures seem to be under control. You all continue to be in my prayers.
Thanks for all the updates! We are keeping you all in our prayers and we love you guys!
Beth, Thanks for all the news. It is good you are there.
We continue to pray for all of you.
Lara I am so happy you have help with you! You need and deserve a break once in a while; I'm sure you are beyond physically and emotionally drained.
Looking forward to seeing you all in a few weeks; we are still constantly praying for you, Marshall, and Timmy!
Hi guys - thinking of you and so glad you're able to catch a little break. The arching sounds very much like what Derek gets with reflux. His neuro also thinks he has dystonia, and maybe spasticity which also causes the stiffening and related pain. You are all very strong and have all of us right behind you. Sending our love continually,
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