Shunt problems

 

Thursday, May 8, 2008 7:15 PM

 

Just wanted to update everyone and let you all know that Becca is pretty much back to normal. As normal as she can get 🙂 Some good news is that I am seeing a few small things here and there that show some real improvement overall. There seems to be some new confidence and desire to walk. Of course that has sadly been diminished by seizures causing her to fall each time she has tried. But she is trying more, and has more confidence to try that she never had before. We are still seeing more use of both hands. Her receptive language also seems to be improving.

Actually her overall awareness of her environment has drastically improved.

Its amazing.

She is still a little weak from all that has gone on, but that will improve. I can’t wait to see what is in store for her as she gets her strength back. We take her to the Neurologist later this month (for her seizures). David and I are wondering if we should seek a new Neurologist – actually one of the last times we saw her she actually said to us “If you want a 2nd opinion I’d be happy to help you find someone”. If we are going to go that route, please pray that we are able to find a doctor that can treat

Rebecca’s very difficult to control seizures.

 

Thursday, June 26, 2008 10:06 AM

 

I can’t believe my baby is 3, and in a few weeks will be starting pre-school.

Time sure flies.

We had a nice small birthday party for Rebecca.

What is really special is a couple of days ago I got together with Kathleen, and her daughter (Rebecca Grace). The two girls are only 5 weeks apart. We usually refer to them by first and middle names, since they are both named Rebecca. anyhow – while the two girls were sitting on the floor they just kept giving each other hugs. It had been a long time since we’d gotten together, and it was so sweet to see them being so affectionate with each other. I’d never seen my little Rebecca be so affectionate with another child. She really kept putting her arms around Rebecca Grace’s neck and pulling her in close. And of course Rebecca Grace is such a big helper, making sure Rebecca Kaylene has her sippy cup and paci nearby – and even bringing her toys. It isn’t quite the picture I had in my mind of how our little girls would play together as they got older. God had a different plan for my Rebecca – but the picture has turned out to be oh so Beautiful.

 

Tuesday, July 8, 2008 4:04 PM

 

well tomorrow we go to the Dr to get some blood work done, to check all of her medication levels. They have also ordered a CT scan, to make sure that the shunt is functioning properly. We still have our appt on the 17th with Dr. Leigh. But they have bumped up our appt with Dr. Grant (the Neurosurgeon who put in the shunt) from the 29th, to the 17th. So we will see both of them that day. Please, pray that her blood work shows us something!

Poor Rebecca has been having a hard time lately. She has been sleeping way too much (the better part of the day – she is only awake a handful of hours each day). On top of that its a struggle to get her to eat. Those of you who do know Rebecca know that she LOVES to eat – so this is not like her at all. This morning for breakfast I managed to get her to eat about half of a thing of oatmeal. And even that was a struggle. I’m still waiting on the Neurologist to call me back. Rebecca’s therapists are also troubled because we have noticed she is regressing in her skills. For instance – where as we were working on walking, we are now working on sitting. She can’t even maintain a sitting position without looking like a weeble wobble. Obviously something is seriously wrong. Her therapists have offered to send their notes from the therapy sessions to the Neurologist to help the Dr. get a better idea of what they see going on. Please pray for Rebecca that we can solve this. Its been heartbreaking enough seeing her struggle with head drops daily (that is the type of seizure she has). Its been hard enough with her having significant delays. But now she is facing serious lethargy, and appetite loss, and loosing skills on top of everything else. Its scaring David and I very badly.

 

Friday, July 11, 2008 6:58 PM

 

Oh how wonderfully fun our life has been since Wednesday afternoon –

NOT!!!!

So we get back from the blood work and CT scan. I’m just finishing up dinner, and Dr. Leigh (the neurologist) calls and said the CT scan looks bad and shows a shunt malfunction – we need to go directly to the ER and neurosurgery will come see here there. We know how painfully stressful the the ER is, so we balked at that idea without knowing that a neurosurgeon (hereby typed as NS) having viewed the scan, to confirm. (there was a previous time she said the scan looked bad, but NS said it was fine). So after NS called and said, yes it appears there is a shunt malfunction, you should come in, David and I rapidly gathered what we needed for a few days stay at the hospital.

So we get to the ER, and find out there are NO rooms upstairs in the children’s hospital. So we have to spend the night (and half of the next day), in the ER waiting. the next morning even when we see Dr. Fuchs – the NS on call that day (Dr. Grant was off), he said he didn’t have any OR time, so we were at the mercy of the OR to even get a slot to perform the surgery.It was around 3:30 or so on Thursday when someone finally came to get us for Rebecca to go up for surgery. Poor baby hadn’t had anything to eat or drink since 6:30 the night before. She had gotten an IV started earlier – so she wasn’t dehydrated, but she was CRANKY about no food or drink. So the surgery started around 4. At 5:30 we were told that Dr. Fuchs was finishing up and to go into the little room and he’d talk to us in a minute. (The little room isn’t an indicator of a problem – most doctors talk to the parents in their after surgery, since it is more private).

so here is where you jaw falls down

Dr. Fuchs said the source of the blockage was a blood clot in the shunt! (Feel free to curse, yell, scream, cry, whatever floats your boat – me I sat there with my jaw on the floor). There was big clot at the top – therefore the shunt couldn’t work – it was blocked. Then down a big portion of the top of the shunt tubing they found blood (clotted in a little snake like line all down the line). He tested the rest of the line, and it “tested” fine (as if no blockage), but he said since he found blood in higher parts of the line, he thought it would be better to replace the whole thing. So we hung out in recovery for a while, STILL waiting on a room. At 8:30pm a room was finally ready for us up in the 5300 of Duke. The great news is she was already awake, and alert. Groggy of course from the surgery, but sooo much better than the initial shunt placement. In the morning (Friday) she had some breakfast, and gobbled it up. She still didn’t eat much – but considering the past 24 hrs for it, it wasn’t unreasonable. But by lunchtime her normal appetite was back. We were finally discharged at 5:30, and came home. Time to collapse.

 

Monday, July 14, 2008 6:22 PM

 

Rebecca has been doing pretty good recovering. Take a look back to April, and you will see we did not have a good time at all with the initial shunt placement. This time is so different. (I blame it all on the anesthesia people because she wasn’t waking up right the first time – but this time with our hounding about her response to the anesthesia she was awake the night of the surgery).

Yesterday and today she has been playing, pulling up to standing and even waking with two handhold assistance (look at the main picture up to the left – that is what she was doing there). And even better is her appetite is back.

We’ve seen a few clusters of seizures each day, which is always sad and depressing, but we are oh so glad she is bouncing back fast. Lets pray that these seizures are still a part of her brain and body recovering from the surgery and that this time around the shunt really will help stop her seizures.

We go to the Neurologist on Thursday, just a regular appointment. Then Monday is our big follow up CT scan, and Becca gets the stitches out (Dr. Fuchs had to do sutures this time on the scalp incision – the belly incision still has the dissolvable kind)

Thank you so much for all your prayers and your support!

 

Monday, July 21, 2008 3:19 PM

 

The latest CT scan looks GREAT! Oh my goodness, I couldn’t believe the difference.

Rebecca got the stitches out today. She was such a good little girl. She is doing so good today, active and playing.

 

Thursday, August 28, 2008 7:00 PM

 

I meant to update earlier this week – but time slips away. So Rebecca has started Preschool. She will be going on Monday’s from 9:30 – 11 for a while, just to get her used to things. Mondays she has 4 classmates – all boys. And don’t you know they all fell in love with her. It was the cutest thing I’ve ever seen. I stayed with her, and will stay until she is all settled in. I’m doing this more for the staff than anything. Everyone is pretty anxious about her seizures. We are weaning her off the Depakote (one of her seizure medications). It wasn’t working for her – to control her seizures, and it was having bad side effects for her. We are still in the weaning stages and already there is marked improvement. She is more alert and more vocal since she started on this drug. We haven’t seen our little girl like this in a long time (this is a good improvement).

 

Thursday, September 25, 2008 7:10 PM

 

Rebecca continues to do well. We had a nice mini Vacation last week, at Carolina Beach. Rebecca actually liked the sand and ocean this time. She was so cute with the help of myself, or Daddy standing in the surf, letting the waves crash on her. I think she really liked the feeling of the water, and how the sand pulled away under her toes. Of course she tried to eat some of the sand when I showed the sand to her. YUCK! Becca and I have both had a nasty cold (I think quite a few people have had the one going around). It has been a tough one to kick. Another happy note is I think Rebecca is now totally done with bottles, and only takes a sippy cup (or one with a straw). This has been a really long process! She has also started getting really vocal again – perhaps some of the old Becca is reappearing, the one we had before her shunt surgeries. I have a request for folks – there is a little baby, whose caringbridge site I have been following. She is VERY sick, and is in need of our prayers. This is her site http://www.caringbridge.org/visit/graciejeanlockyer Please pray for Gracie.

 

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