October 2007

Our little Sophie continues to improve but she’s still not quite herself. Her walking is much better though, and her stamina seems to improve everyday. I know Dr. Edwards had told us it might be a week before she’s herself, but it’s still hard to watch her hold herself up with furniture and tire so quickly. She wants to be herself so badly. Trent has so much energy and although he’s very careful with his sister, it is clear he misses being able to rough house with her.

Last night we had our neighborhood pumpkin carving party. Typically it’s our event to host but given what’s been happening, we just combined it with our Monday neighborhood dinner. Trent enjoyed himself so much. He quickly lost interest in carving though and quickly joined the other toddlers in putting green paint on a pumpkin our neighbor Jean put on the ground. Hours of fun. Sophie though wasn’t up to the outing and after a quick hello to show off her new red hat that our friend Carol gave her, she wanted to go home and just watch out the window. She clearly knows her limitations, and even though she’s not very verbal yet, she’s quite good at letting us know when she needs a break or something is too much. She’s still doing lots of sleeping but as the doctors told us, she just needs time to let her brain heal.

Our plan for tomorrow is just to play Halloween by ear. Grandma and Grandpa Keen will take both babies down to the trick or treating parade at the store fronts on Lincoln Avenue tomorrow morning but we’ll just play it by ear tomorrow night with Sophie.

Trent will be dressing up as a fireman tomorrow and Sophie will be the aqua fairy (thank you Tia for the costumes).

Sleeping continues to be an issue for both babies. Sophie just fusses (we think her incisions are bothering her) and Trent is now doing the navy seal out of his crib every night. We’re hoping its just having his routine disrupted but honestly we think it’s probably time for a big boy bed.

It’s been a long 21 days but at last, we have our Sophie girl home. I was sure to remind all the medical staff of our plan to come home today, and everyone was very good about making sure the meds stayed on time and the orders were written to we could come home this afternoon. We are so happy. Aaron and I could hardly contain ourselves as we took her down to the car from her hospital room today. She’s quite weak but so glad to be home. She immediately asked for Tia and was greeted by two amazing welcome home signs from our neighbors. I think they were as happy to see her as we were. Trent though wasn’t sure what to think. He’s been talking about her for 21 days but clearly didn’t understand what was really going on. He has though been waking up at 4:30am for the last several days and crawling out of his crib carrying her picture. Oddly enough she too has been waking up at the same time- just in the hospital. I know it’s not something we could ever prove but it certainly does appear that the “twin connection” is real.

It’s hard to get used to Sophie’s new look with all her sutures, stables and wounds. Our friend Jamie gave her a very nice hat which she came home in today. Oddly enough, she’s never been much of a hat gal but she was more than happy to keep the hat on today.

It was so nice to see she and Trent play together. He’s definitely careful of her and continually say’s “Sophie has a bad booboo” but continually smiles and has a glint in his eye we haven’t seen in quite some time.

The docs have told us to expect Sophie to be weak for a least week but she’s trying hard to be herself. We’re all so protective though and follow right behind her when she walks given her weak state.

Tonight Grandma Judy and I took the babies to the dog costume parade on the main drag in Willow Glen. Grandma’s poodle was dressed up as a chicken and was definitely the hit of the parade. They babies had such a nice time. It was so nice to see Sophie smile again. It was hard though when she knocked her hat off tand I saw people’s faces. I guess I’ve just got to get used to saying she had brain surgery and she’s ok now.

We’re so glad to have our family back together and hope tonight that everyone sleeps very soundly.
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It’s funny how usually neither Aaron and I look forward to Sundays since it means a work day is almost right there but this weekend- we can’t wait for tomorrow.

Today Sophie girl was moved out of the PICU and is now in a private room. She’s still weak but slowly regaining her strength. Today Grandma, Grandpa and I took her for a walk around the 3rd floor between antibiotic doses. She walked to walk so badly but her little legs were like wet noodles and she had to hold both my hand and grandma’s to keep her balance. Typically she is very independent (and very stubborn) but it was clear today she needed help and actually may have been slightly afraid she might fall. I was surprised though by how much the walk took out of her (she took a 4 hour nap after returning to her room). Dr. Edwards reminders of how much she’s been through over the last couple of weeks (especially the last week) still ring in my mind and I try not to get too concerned about how weak she is.

We are counting the hours though to her return home. I’m staying the night with her tonight just to make sure she’s ok but have made sure to tell the nurses the plan so we stay on track for her antibiotics regimen in order to achieve our goal of discharge tomorrow. Apparently we’ve been here so long and have experienced so much that her afternoon nurse finally asked me if I too was a nurse (I guess I used a several terms that led her to believe that). It doesn’t take much though. You only have a child screaming in pain just once before you find out how long it takes to get drugs ordered, how long it takes them to arrive and the overall process to get the neuro team involved when there is a problem. All I can think is – one more day and we’re finally made it.

Our big boy continues to hang in there. Last night Grandma Judy hung Sophie’s picture in his crib (with her new look). He seems to understand but once again was up at 4:30am coming into our room. It was odd though. He found a copy of the picture on the desk outside our room and brought in to show us. Typically he’s this amazing sleeper but the last several nights in which Sophie has woken up at 4:30am in her hospital bed. Trent too has woken up and climbed out of his crib. I’m sure it just a coincidence but it’s hard not to think about the mental connection they may have.

He had a wonderful day though. We took him this morning to the Willow Glen homecoming parade this morning and then Grandpa and Grandma Judy took her to the Halloween party at the Elks where their motor home is parked. He had a very nice time but wanted nothing to do with the haunted house or the clown. Cleary he doesn’t do scary things or large characters so we know for sure Disneyland is not a near terms thing in our future. Aaron had carved him a pumpkin (at 4:30am this morning before coming to the hospital) and his pumpkin won second place. Thank goodness Aaron has that skill since I have zero craft capability. Tia had gotten a firefighter costume and apparently he looked quite handsome. Grandma Judy promised to take pictures and I can’t wait to get home to see them.

I know it’s been a long haul but I know Sophie knows we’ve always been here and counted on that. Tonight I rocked her to sleep and just holding her reminds me of how special she is and how fortunate Aaron and I are to be in Stanford’s backyard and to be able to get Sophie the care she needs to grow and flourish.

We pray for a complete night of sleep and an easy discharge tomorrow.

Our little Sophie girl continues to improve and now we can truly see an ending of this very difficult time. The recovery is slow though. Her appetite has definitely returned, but she’s still very quiet. Occasionally she’ll get a burst of energy and start talking, like this evening when she said “I want more grapes please”, but mostly we just hear “No”, Mama and Papa. The doctors though are very happy with her progress, and as soon as there is a bed available, she will be moved out of the PICU back to the general pediatric floor. She continues to take her antibiotics and will do so until Sunday. After a bit of negotiating that required a double-pronged approach from Dr. Klaug (Dr. Edwards fellow) and myself, we were able to convince Dr. Edwards that Sophie should be discharged on Sunday afternoon upon completing her final dose of antibiotics. She ‘s on a strict schedule of antibiotics at 8am and 4pm, so as long as they’re not retimed and she continues to improve- the docs have agreed to discharge her after her 4pm dosage on Sunday. We just want to get her home and staying one more night in the hospital once she’s off meds seems unneeded. Dr. Edwards was so funny about it all though. Dr. Klaug had told him I wanted to negotiate (he originally wanted to keep her until Monday) but got my plan and agreed. I had the bed shortage argument in my back pocket, but it turned out to be unneeded. Dr. Klaug is also on service on Sunday so he’s agreed to support the plan and write up her discharge paperwork so we can leave in the late afternoon.

Today Grandma Judy took a digital photo of Sophie and will print it out to show Trent so he can get used to new appearance, We think he understands she is sick though. He doesn’t ask anymore where she is and will just say, “Sophie is sick or Sophie is at the hospital”. We just need to make sure he’s gentle with his sister when we bring her home. He tends to be quite protective anyway so hopefully he’ll understand he just needs to be extra gentle with her for a while.

Tonight my friend Jamie came to see Sophie and brought lots of goodies for her as well as some very cute hats. Jamie is a shopper extraordinaire, so we’ve asked her to take on the task of professional shopper for Sophie’s hats. The babies just love her and know to run right to her office when I bring them into Apple.

Aaron and I continued to be simply amazed by the love and support we’ve gotten from our friends and family. I know Sophie is a strong little girl but we definitely know that her recovery also has a lot to do with all prayers and love she has received from the people that care for her.

Hopefully tonight will be another restful night so she can continue to heal.

After a long day we’ve gotten the word from the neuro team that Sophie is officially “out of the woods” (Dr. Klaugs words – a Fellow on Edwards’ team) this statement came after her 4:30pm CT. I tried to convince them to let me hold her and let us go down in a wheelchair (I’ve been holding her all afternoon for the first time since last Friday) but the PICU has all these procedures so you have to take the breathing kit, the monitor and it just goes on. Needless to say with all this extra hardware, the crib quickly becomes the vehicle of choice. Unfortunately Packard is going through a major addition project so there is just the festival of junk on the floor (building materials, boxes, equipment, etc- you name it) so moving a 75lb crib was hard with all the obstacles.

Once again, the Nevada folks stepped up and we had two different neighbors at our house at 2:30am wanting to take care of Trent. It all worked out that Grandma Judy and Grandpa Bobby were able to stay home with Trent, but once again we realized how blessed to have people that love us and will come over at 2am when we need them.
This afternoon’s scan showed positive signs though and her ventricles are defiantly shrinking.

Our poor little Sophie, She’s been through so much, She’s definitely not herself, but she clearly was happy to see her grandparents and her Tia. Just a little smile but it was enough for us. It’s hard though to have her so quiet. As much as she’s been a pain (and I know she has a reputation as being stubborn among the nurses which I can clearly own) I think everyone wanted that stubborn girl back. It was funny, the neuro team even said they missed the girl who say’s “All Done and NO”. Her brain just has to heal though. Dr. Edwards reminded me again today how very, very sick she was tonight and that we just have to give her time. I know he’s right but she’s so different and we just want our Sophie (stubborn, opinionated and pig headed and all) back.

I feel like we almost seeing the light at the end of the tunnel but for now- we continue to take it one day at a time.

It’s been another long day. The surgery last night went well but she was quite sick and has had a hard time coming around. Apparently her ventricles were quite enlarged so it made placement of the shunt quite a bit easier than it was in the early afternoon surgery. It’s a tricky thing though. They had tried last week to turn off her shunt in order to make the ventricles bigger pre surgery but within 30 minutes she began to get ill so they had to turn it right back on. Last night though was just about the scariest place we been to date. She was so sick with the meningitis and peritonitis but last night when she lost consciousness just about pushed me over the edge. We are so thank full for the quick response of the surgical team. It took both hospitals to pull it off but within 30 minutes of knowing she was critical- they were able to relieve the pressure. Dr. Edwards told Aaron and I that he knew when his phone rang at 2am it was about Sophie. Her doctors seem to treat her like their own. It’s very special to watch.

This morning she had another CT scan and although it still showed her ventricles to be enlarged, the doctors believe they are decreasing. We’ll have another scan this afternoon to make sure things are continuing to go in the right direction. She was also taken off the ventilator at 11am this morning. She then went to a nasal canella and that has now been removed she’s back breathing on her own. We continue be grateful for every small improvement.

She’s been very, very tired all day and has hardly moved at all. She’ll look around a bit and recognizes us but hardly say’s anything (I think because her throat hurts) and still has a bit of a vacant look on her face. I hold her hand and just keep asking her to come back to us. I know she will- I just wasn’t prepared for this set back.

October 25th has started out as a pretty lousy day. At about 11pm Sophie started to vomit and continued to get progressively worse. I’ve never seen her this sick. It was quite clear from the neurological exam and subsequent CT that she has increased cranial pressure. We weren’t able to wake her up and heart rate was very low. The neuro team quickly assembled, and she was just rushed into surgery. I was told though that because she was so ill now that she will be intibated and will probably be on a ventilator until sometime tomorrow. I knew Dr. Edwards was worried today when we saw him and all of our worst fears have now come true. The next 2 1/2 hours in the dark at Stanford will be very long scary wait.