12. August 2008 by admin.

Sarah had her throat scoped by Dr. Willging (one of the ENT surgeons I work for). He was looking to see what is causing her cough. He found no issues at all. Her throat is fine. Her swallowing is excellent. That means that we still are not totally sure what the problem is. The neurologists, Dr. Franz and Dr. Lee are not too worried about it. I think they believe that if it is neuro related that it will pass in time. Dr. Mangano promised that there are no more connections between the hemispheres so it can not be that.

She is doing very well in therapy today. Her OT therapist said that she had some movement in her right bicep, but nothing that she could replicate. Her leg is moving more everyday. She got her new brace. It is purple and has butterflies on it.

I am driving up to Columbus on Friday to pick up Miley.

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11. August 2008 by admin.

Sarah had restful day Sunday. She was visited by her Nana and Grandpa, and then her friends Chelsea and Abbey. Sorry I didn’t take any pictures today. She still has a nagging cough that is concerning me more than anyone else. I guess it is because I stare at Sarah intently looking for anything out of place, twitching, or has some kind of pattern to it. It seems feudal since her whole life has been turned upside down and out of place. I know the look in her eyes when she has a seizure, and when this cough hits her she has the same look. I don’t know what to think, so I am reserving my going off the deep end until I talk to her neurologist about it.

Jesse’s Dad gave me some advice when I started the blog. He told me to never leave anything out so people are never misled about Sarah’s condition and they get the whole story. Make sure I always include the good and the bad. I think of that when there are things I want to omit from this blog because I don’t want to think about them or I am having problems dealing with them myself. I say all of this to explain why I am telling everyone about this cough Sarah has. It has a lot of characteristics of a seizure. It comes on and she can’t control it. You can see her heart and breathing rate jump up. It seems more like a tic or spasm than someone coughing to clear their throat or get something out. She says that she can’t stop it and she gets the seizure look on her face when it happens. It started with the seizures she had after her hemispherectomy and continues after the surgery she had last week. It comes on a lot when she is trying to go to sleep and clusters the same way her seizures used to at bed time. It could be due to the fact that she had two very long intubations within a few weeks and her throat is highly irritated. I tried to get her to take some deep breaths through her mouth today during one episode and it seemed to stop it, so that made me feel a little better. It could just be post-op seizures (so far, that “it could just be post-operative issues and will go away in time” has not really been a source of comfort to me). I am not sure how I would handle it if she starts having seizures again. I feel that all the emotions that I have been able to hold back will just explode out of me and the weariness that I have been able to keep in check will just consume me all at once. I know I can’t let it, because I told Sarah that she doesn’t have room for laziness, and having a little pity party for myself would feel like the lazy way to deal with this.

I went to physical therapy with Sarah on Saturday. When her session was over the therapist told her that she would have to walk back to her wheelchair which was across the room. She wasn’t feeling good and was being a little defiant about doing it. She looked at me as if she wanted me to come over and carry her to her wheelchair. At that point I said, “Feel lucky, if it were up to me I would make you walk all the way back to your room”. The therapist and the nurse in the room looked at me like I was the most unfeeling hard-nosed militant parent in the world. Kim always tells me that I am too hard on Sarah. I always said that I didn’t want her to be a soft and fragile woman later in life. I want her to be able to take it when things got tough. Not to turn to self pity for comfort. When I sit and stare at her while she is sleeping I regret the times when I am hard on her, but feel that maybe it will help her be a fighter and get through all of this with a positive spirit and know that nothing in her life will ever be able to beat her into submission.

I will stop here. This was going to be a short and sweet post about a relaxing day for Sarah, but this is how I get at two o’clock in the morning.

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9. August 2008 by admin.

Sarah is still dealing with stomach problems. She vomited twice today. We are not sure why. Dr. Mangano stopped in last evening after he looked at her CT scan. He told us that everything in her head looks fine, so he is not exactly sure why she is still dealing with all the nausea. I guess she could have a virus or something. It seems like there is an endless supply of hurdles for Sarah during this therapy.

She was not wanting to do therapy today, but she complained and suffered through it. I was going to do a web gallery of therapy pictures we got over the last two days, but there are just a few so I will just add them to this post.

Just a little higher

Got It!

Just being a ham for the camera

Keeping her balance while being a ham for the camera

Movement in her right leg is getting better

Not feeling well in therapy and doesn’t care who knows it

Getting her pitching arm loose. The Reds might need her soon.

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8. August 2008 by admin.

Edited: Sorry, I had to come back and edit this post. I typed it out so fast that I had some misspelled words, things left out, and didn’t word things the way I really wanted to.  

Sorry for not posting anything yesterday. Logan’s soccer has started back up and he has practice five days a week, so we are extra busy now. Sarah is doing well in rehab, but vomited again today, so they took her down for a CT scan. She has some pressure due to some leftover blood. I spoke to one of the doctors in my department and he told me that as long as it is not continuously bleeding that her body will get rid of the blood in time, but it will take a while. We have not heard from the surgeon as to what his plan is for this.

She is working hard and getting some results. She will have to leave her stitches in for three weeks this time due to how many times they have went in the same site. The surgeon is amazed on how good of a healer that Sarah is. I credit The Great Physician for her healing.

Sarah received a special gift from a friend of her Aunt Cheryl. There has been a wild horse adopted in her name. Sarah now has her own horse. It will not live with us and we may never see it in real life but it is her’s just the same. She got a picture and a certificate of adoption. The horse’s name is “Something Special”. She was very excited about this gift. She has been showing all her doctors and therapists. One of her nurses is from the area where the horse lives. Kim wants to plan a future vacation to go and see it.

Also, I ask everyone to keep Nicholas Rook in your prayers. He is from our community and has a liver disease. He and his family is going to need plenty of prayer and support through this. His mom says that it can be treated with medicine, so let’s hope that the doctor’s down here at CCHMC can fix the problem permanently and with no lasting deficits. 

Sarah showing her adopted horse

Getting some bedside therapy

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6. August 2008 by admin.

Sarah moved back to rehab yesterday. She is holding food down and talking more. Today she starts back in her full therapy schedule, so she should be pretty tired by this afternoon. They wrapped her head back up to try and get some swelling down. She should progress much faster now in therapy since she is not having to deal with seizures. I am almost afraid to say that. I am not really superstitious, but I don’t want to jinx her by saying that she is “seizure free”. I will just say that since her surgery she has not had any seizures and we pray that it stays that way.

I went up to see her this morning at 8:00 and the lazy girl was still sleeping. She has to get back on her therapy schedule. Miley is almost ready to move in with us, so there is no time for slacking off…………. I know, Kim thinks I am too rough on her too.

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4. August 2008 by admin.

Sarah is still a little sick from the surgery, so she will be spending at least one more night on the Neuro floor before moving back to rehab. Kim told me that she saw Sarah move her right arm three times while she was sleeping. We still have not seen any seizures and still praying we never do. I think that will always be in the back of our mind no matter how much time passes by. She is really blowing the doctors away with how fast she is progressing. They always tell us how amazed they are with her progress.

We received updated pictures of Miley. She will be joining our family in a couple of weeks, so Sarah has to really start working hard to get home and take care of her.

Miley is getting big

Sarah with her favority nurse Barb. This is the person responsible for Sarah’s “princess complex”

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3. August 2008 by admin.

Dr. Mangano came in and took off her head dress and said that she looked good. She had more pain last night and needed some morphine, but she is much better today. Still have not seen any seizures, so big praises to the Lord for that. She is back on regular food now. She is waiting for her waffles to be delivered from room service. We are waiting for the Neuro floor to call and let us know they have a room for her. She will be moved as soon as they are ready. Dr. Mangano said that she may only need to spend one day on the Neuro floor if she does well tonight, so she could be back in rehab by Tuesday.

Sarah with her friend Marissa (I forgot to post this after her party)

Sarah is happy to get her head wrap off.

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2. August 2008 by admin.

Sarah is doing good, but will spend the night in ICU again. She had to get some blood and was feeling some pain. They thought she may need another CT scan, but she is doing much better now. Sarah drank some juice and is doing well swallowing. She will be moved to the Neurology floor tomorrow morning and maybe we can start with some real food.

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1. August 2008 by admin.

6:00pm

Sarah is out of surgery and is doing well. Dr. Mangano is confident that he severed all connections and also removed some of the left side that was causing all the problems. He said that if she doesn’t have any issues tonight that she will be moved to the Neuro floor tomorrow and if she does well she could be back in rehab early in the week. The rehab folks are holding her room for her. They seemed confident that they will not need the room. We are happy about that. The room is at the end of the hall and is quiet. Praise the Lord for getting her through the surgery in good order.

Oh yeah, did I mention that she is talking? Praise God for that too. I told Kim that I wouldn’t post this but I can’t resist. She said Daddy instead of Mommy.

Thanks to everyone for there prayers and support. Keep praying we never see another seizure. I will post more later, but it will probably be tomorrow.

3:20pm

We just got word that they are closing. It probably will take them a while to close so we may have an hour or so more to wait. We have not had a chance to talk to the surgeon yet.

2:40pm

The only update we have is that she is doing fine. Not sure how much longer.

10:42am

First incision. The 7:30am start time eludes us again.

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1. August 2008 by admin.

Just wanted to let everyone know that Sarah’s surgery time was moved up to 7:30am. I found this out at midnight, so couldn’t really get the word out. I will update the blog today as we get information.

Thank you everyone for your prayers for Sarah.

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