We never saw the Neurosurgeon. Turns out he got back from vacation and headed straight into 24+ hours of surgery. He looked at Brooke's MRI but had not realized that we were only there waiting on him. The intensivist on staff on Tuesday morning called him up and had a brief conversation over the PA in the OR. He said...and I roughly quote...."No Surgery. Need to schedule a prompt follow up appointment to discuss abnormal MRI. Not likely hydrocephalus." We were promptly discharged. I went home, got outside a ton, and spent a lot of time with both of my girls...especially Julia who told me she "was tired about me at school." This means she was sad that I wasn't home.
Magically...Brooke is doing so so well. She is up to her old tricks - the good ones. She is crawling, clawing, laughing, sleeping appropriate amounts and not a second more. She is eating well and is extremely happy. She had three afternoons where it seemed as if she had a headache or was in some kind of pain. Tears...rubbing her feet and hands together...crying out in spurts. The 3rd day we gave her Ibuprofen and it came to a stop shortly thereafter. This could have just been a coincidence. Time will tell.
We do have a follow-up appointment with the Neurosurgeon this Wednesday. The MD in the hospital said that if everything was a-ok the Neurosurgeon wouldn't be seeing us. This doesn't mean there is a critical issue or even anything to worry about...but he wants to see her and discuss Brooke's symptoms.
I could run through my theories, but I'll hold back. Here's my recap...
Crazy New Years Weekend with no alcohol involved
No treatment
Many tests
We left with many things 'ruled out'
We were in the right place
I'm glad we finally got out of there!
Until Wednesday...
Kadie
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Sunday, January 8, 2012
Tuesday, January 3, 2012
Update
This is not much of an update, but here goes....
We are still here at the hospital. We are two days into our wait on the neurosurgeon. We really thought we'd be out of here yesterday, but he wasn't able to come by. Hopefully today...hopefully early!
Brooke is doing exceptionally well. She is awake, alert, no bad spells of fatigue and irritability. No lethargy to be seen! She appears healed! But the question remains...what the heck has been causing this pattern over the last 4 months. Everyone that knows her well and has seen her wothin the last few months can tell you that this is not normal Brooke! And the lethargy is to the point of frightening. None the less...happy to have her smiling and active again in the morning.
This rebound has made the doctors skeptical of hydrocephalus being the cause. Hydrocephalus is usually a progressive build up of fluid around the brain that gets worse and does not dissipate. This according to the intensivists and the neurologist we've seen here. We will see what the neurosurgeon has to say.
Keep you posted...
Kadie
We are still here at the hospital. We are two days into our wait on the neurosurgeon. We really thought we'd be out of here yesterday, but he wasn't able to come by. Hopefully today...hopefully early!
Brooke is doing exceptionally well. She is awake, alert, no bad spells of fatigue and irritability. No lethargy to be seen! She appears healed! But the question remains...what the heck has been causing this pattern over the last 4 months. Everyone that knows her well and has seen her wothin the last few months can tell you that this is not normal Brooke! And the lethargy is to the point of frightening. None the less...happy to have her smiling and active again in the morning.
This rebound has made the doctors skeptical of hydrocephalus being the cause. Hydrocephalus is usually a progressive build up of fluid around the brain that gets worse and does not dissipate. This according to the intensivists and the neurologist we've seen here. We will see what the neurosurgeon has to say.
Keep you posted...
Kadie
Sunday, January 1, 2012
Maybe I can Get that Botox someday after all....
Happy 2012 to everyone.
On Friday of last week, Brooke was admitted to Sutter Memorial Hospital by Dr. Sheikh, one of the intensivists. Brooke's GI physician is the reason her case came to Dr. Sheikh. Dr. Davies listened when I could not find anyone else to listen and helped us avoid a long line, long wait, and potential turn-around from our local ER. The lethargy and concurrent loss of motor skills was getting worse. Brooke was beginning to crawl and support her weight again in the evening, but from 7pm (sleep time) to 11:30am the next day, she was a mess. A hot mess...hard to wake up when I tried and would sleep as late as 10am when I wouldn't. She would wake for about an hour tops and fall back to sleep soon thereafter only to wake again groggy. I was beside myself and worried. I started to believe that it couldn't be caused by botox poisoning. Her Neurologist was skeptical of the theory, and I was too now. Why would it be getting worse? Could she have anemia, a systemic yeast infection...I started trying to tie all of the pieces together. A valiant attempt, but I'm just not a doctor. All I really had was my gut feeling and I knew something was wrong. Looking back, it had been going on for 3+ months - worse sometimes, better others - but she had never gotten back to her baseline.
We had an MRI on Saturday followed by a 24+ EEG. The MRI was to look for fluid issues, brain bleeds, potential tumors. The EEG was to look for seizure activity that could explain the fatigue and grogginess in the mornings. Good news...so far it looks like the EEG is normal. The verdict will be in on that tomorrow when the Neuro gets the complete results back to us. Bad news and potential explanation for the lethargy...Brooke's MRI indicates hydrocephalus. We speak with the Neurosurgeon tomorrow and should learn more. The Neurosurgeon could always come back and not agree with the neuroradiology report. There is always that chance. If so...we still won't have an answer. If they agree, we will be looking into the strong possibility of surgery to redirect the excess fluid from the brain into the abdominal cavity, where it is reabsorbed by the body.
Brooke is doing really well. She is happy, smiling, kissing, etc. Julia is staying at my parent's house so Ryan and I can trade off hanging with her and spending time here. I am doing the night shifts because there is no way I could sleep at home with Ryan and Brooke here without me. This is all part of the journey. Keep you posted...Keep us in your prayers...
On Friday of last week, Brooke was admitted to Sutter Memorial Hospital by Dr. Sheikh, one of the intensivists. Brooke's GI physician is the reason her case came to Dr. Sheikh. Dr. Davies listened when I could not find anyone else to listen and helped us avoid a long line, long wait, and potential turn-around from our local ER. The lethargy and concurrent loss of motor skills was getting worse. Brooke was beginning to crawl and support her weight again in the evening, but from 7pm (sleep time) to 11:30am the next day, she was a mess. A hot mess...hard to wake up when I tried and would sleep as late as 10am when I wouldn't. She would wake for about an hour tops and fall back to sleep soon thereafter only to wake again groggy. I was beside myself and worried. I started to believe that it couldn't be caused by botox poisoning. Her Neurologist was skeptical of the theory, and I was too now. Why would it be getting worse? Could she have anemia, a systemic yeast infection...I started trying to tie all of the pieces together. A valiant attempt, but I'm just not a doctor. All I really had was my gut feeling and I knew something was wrong. Looking back, it had been going on for 3+ months - worse sometimes, better others - but she had never gotten back to her baseline.
We had an MRI on Saturday followed by a 24+ EEG. The MRI was to look for fluid issues, brain bleeds, potential tumors. The EEG was to look for seizure activity that could explain the fatigue and grogginess in the mornings. Good news...so far it looks like the EEG is normal. The verdict will be in on that tomorrow when the Neuro gets the complete results back to us. Bad news and potential explanation for the lethargy...Brooke's MRI indicates hydrocephalus. We speak with the Neurosurgeon tomorrow and should learn more. The Neurosurgeon could always come back and not agree with the neuroradiology report. There is always that chance. If so...we still won't have an answer. If they agree, we will be looking into the strong possibility of surgery to redirect the excess fluid from the brain into the abdominal cavity, where it is reabsorbed by the body.
Brooke is doing really well. She is happy, smiling, kissing, etc. Julia is staying at my parent's house so Ryan and I can trade off hanging with her and spending time here. I am doing the night shifts because there is no way I could sleep at home with Ryan and Brooke here without me. This is all part of the journey. Keep you posted...Keep us in your prayers...
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