Getting settled and now back to school

Well each day is getting easier with Jen's feedings. She still can't tolerate alot at a time and they run very slow. Maybe this is the way it will need to be and we are adjusting. I really thought giving her meds through the tube as well was making such a difference. She did great the beginning of the week, very few seizures, but as the week continued, her seizures have once again picked up. Thursday, Friday and Saturday she had quite a few each day. Today she was very quiet all morning, not interested in lunch. She seems o.k, and healthy, maybe just a quiet day, but then again, we don't have quiet days with Jen too often.
Hopefully she can get back to routine of school, after school program, bus rides. Oh those bus rides, I am so uneasy of those!
Hopefully it will be an uneventful week!

No weight gain yet

We went to Children's for a follow up appointment from Jen's surgery yesterday. She did so well, and was patient with the nurses and doctor. They weighed her and were surprised she hadn't gained any weight yet. It had been 10 days since surgery. I really wasn't thinking it was going to pack on quick anyways. Now we will talk to nutrition to add more calories. We really can't do more volume of formula, she barely is accepting what she gets. The doctor said because of her delayed gastric emptying issues, the feeding may very well have to remain very slow. The site looks good and they ordered other supplies we need on a regular basis. This is all taking alot to get use to. At night I am so preoccupied with her feedings, meds, etc.. When I come back downstairs 2 hours later, everyone is going upstairs to bed, no family life these days.

Our new routine, a challenge to say the least

Jen has been going so so good this past week. We are settling into our new routine too. Our day starts about 30 minutes earlier than usual and ends a lot later than we are use to. It is a challenge. We have 1/2 her meds going through the tube, and the rest she swallows. She gets 2 feeds during the day which each take an hour, and one at night before bed. The one before bed takes 2 hours to run. She is tired and not wanting to be in her chair that late at night. This means she is in her room in bed. Sounds easy enough, but she has to be propped up at least 30 degrees and stay there. Anyone that knows Jen well, knows when she is in bed, she moves constantly on her back in a circle clockwise. I tried the other night to do it after she fell asleep, as she doesn't move around as much, but she won't sleep propped up on pillows, she needs to be lying flat, no pillow rolled on her side scrunched in a ball. SO - that didn't work. While it is running, one of us is in there with her, keeping her propped up surrounded by her pillows. She is funny, all of a sudden with quick force, she swings her legs and pivots around off the pillow. The tube gets caught up in her moving body, the bells ring because the feed shut off and the IV pole tips around, and she is happy as can be. This is all when I was right with her! It is a challenge to say the least for 2 hours! She is still getting use to it all and so are we, she needs the nutrition, but it is time consuming. I look at it like this, I thank goodness she has the strength and the ability to swing those legs, move her body and make herself comfortable, after all she is in bed, she should be comfy, BUT there is never enough time in the day to get everything done, and now, well like I said we are settling in.

Jen is doing great!

Jen was admitted Thursday to prepare her for surgery Friday. Everything went as planned, so nice when that happens, as it rarely is easy for Jen anytime. The best case scenario happened for the procedure for the feeding tube. She was discharged late Sunday afternoon and has been in great spirits. I am so proud of her. As usual I talked to her about it all before/during/after and she was o.k.. This is when being able to read her eyes is so important. She was unusually quiet the entire time, and I knew she was nervous. Usually her tones in her voice help us figure out what she needs, but when she is so quiet, her gaze in her eyes tell the story. She really amazed me all weekend long of being so tolerant of so many strangers. The staff was incredible with her and us. It is unfortunate she needed to have a g-tube placed, but at least the experience was as pleasant as possible.
Yesterday was a day to recoup, she was very relaxed and patient with me, as if I checked her site once, I checked it a 1000 times.
Jen just left on the bus to school. She is packed up with loads of supplies and I made sure to send her favorite foods, snacks. I am headed to work, probably the best place for me to be, to get my mind off this past weekend. Hoping Jen has a good day, I am sure she will, she loves school and everyone there is so caring and experienced.

One step forward, many steps back

Jen had another good week of school! She missed a 1/2 day this week for her physical appointment, but other than that, she has been there, although her seizures are very active and seem to be increasingly worse in length and severity. We spoke to the doctor today, she adjusted one of her medicines. I hope this gives Jen some relief. As I have said before her seizures control her moods which control her day. I had to get her from school again yesterday as they were so bad, the school didn't want her on the bus, and neither did we. Every time she gets on that bus, I time 50 minutes, praying she has a safe ride without seizures. She is safe at school and safe at home, we all know how to care for her, but when she is on the bus, as nice as the monitor and driver are, they are not able to help her, which means if she had cluster seizures or lengthly seizure, they will have to call 911. I feel like its a matter of time before it happens, and really don't like the feeling at all!! Her seizures are getting worse, and the bus ride is too long, but for now, its the only solution.

One week from today Jen will be at the hospital waiting surgery for the next morning. Once the feeding tube is placed and we get her better nutrition wise, we will pursue the vagal nerve stimulator to help control her seizures. We are kind of planning on this working, I hope it does, as what else is there to try? Always something!