Surgery is scheduled for September 22, 2010. But on September 16, Ryan had other plans. This is the daily log Ryan’s dad and I kept on his brain surgery journey.
On Thursday, September 16, 2010 – the original plan was for me to grab Ryan, go home to Britney, who would have been met by my dear friend, Krissie after school off the bus, and we planned on doing dinner. Ryan had other plans this particular day.
Ryan had not been feeling well. He had vomited on our way home from daycare and due to the worry I had with his surgery coming up, I rushed home to be sure Britney made it. I spoke to Krissie on the way and, thank God, she said to take care of what I needed to and she’d stay with Britney.
I took Ryan up to Children’s Hospital – Milwaukee’s ER. On the way, I called dear family friend, Aunt Beth, and my sisters. Abby was headed to Wisconsin for Ryan and my nephew, Wyatt’s birthdays’ so Katie was at the airport to get her. Our parents were on an anniversary cruise in Alaska for 10 days. So for a few hours in the ER – Ryan had the best crowd at Children’s while we waited out some answers.
Turns out, the pressure was causing him to vomit and not feel well. We ended up in the ICU for the night. Ryan’s dad was on his way up from Texas earlier than expected due to the sudden change of plans. He would be in Wisconsin in a matter of 25-30 hours.
In the ICU, we got word that Dr. Kaufman, our pediatric neurosurgeon was headed out on vacation in less than 48 hours. Through the night, he would watch the reports from the nurses and we would make a decision in the morning, unless there were any huge changes.
Friday September 17, 2010
Dr. Kaufman came in right away to discuss our plans for the day. He suggested we complete the surgery. I told him we had plans to do that on the 22nd, but he said since he was there, I was there, Ryan was there, dad was on his way, why not take care of it right then and there? He said all he needed was to give the word to the people in the OR.
So we did it. To follow are notes that I took in the hospital as it was happening.
Neurosurgeon – Dr. Kaufman – post surgery – 1:15pm
They put in a temporary drain in his ventricles to release excess fluid in his brain. His blood pressure lowered after that – A good thing!
He removed bone and part of lining of the brain to push things aside to clear the passage – way so fluid can flow at a normal rate.
They did a typical decompression as they anticipated.
They cauterized part of the cerebellum – so will be on steroids temporarily.
Cauterize – after cutting means to seal off.
The big cyst was not trapped fluid – so that is good! So not as likely to re-occur. So not an anachnoid cyst.
Will leave external drain in for awhile to drain excess cerebrospinal fluid.
They pulled some muscles around in upper neck area so may be aching the next couple of days.
Will see Dr. Kaufman Monday morning.
Out of the hospital around Wed or Thursday…depending on how he does.
They used muscle relaxants but he is slow to metabolize so slower to wake up.
Breathing tube in.
They took a CT Scan after surgery and it looked good.
The ventilator is helping him breath.
He had valium and morphine during surgery.
He will be off breathing tube today.
Increased pressure in brain can cause vomiting.
The decreased ICP (intra cranial pressure) has helped him so far.
They realized that he metabolizes anesthesia meds slowly – so doesn’t wake up as fast post-surgery.
Dr. Lew: 330pm
Said surgery went well.
Ryan is slow to process anesthesia – sleeping longer post-surgery.
With the drain in place, they can monitor the pressure in the brain better.
The decision to take out the breathing tube is up to the ICU MD – will probably be taken out today.
Breathing tube taken out at 4:45pm.
The drain Dr. Kaufman put in will drain off excess fluid, to keep the current balance of fluid in the brain.
How long will they keep the drain in: depends on drainage and MD decision.
Not on antibiotics now
If decision to be made about Neuro, the ICU would call Neuro MD, Fellow or Resident.
Attending MD – Fellowship – Resident
Sept 17, 2010 8:40pm – Breathing treatment – will be twice a day.
Foley removed and morphine given at 10:30/11pm. He was very fussy and irritable.
September 18, 2010 2am: woke up very fussy, crying, head hurt and caused ICP to spike. Will now give morphine every 3 hours.
8am – Antibiotics given. Oxicillion
1130am – moved to 8th floor.
2pm went from 8:30-2pm without Tylenol or morphine. Morphine.
415pm – Morphine.
430pm – breathing treatment
630pm – morphine.
12:15pm – Clamping tube to head for 24 hours.
1:15pm – Dr. Lenson into check on Ryan.
2:45pm – Everytime Ryan coughs it seems he’s in pain. Unclamping tube to see how much drainage accumulated within 2 ½ hours. Approximately 8 drops came out.
10pm: Respiratory treatment
10:20am – Respiratory treatment.
10:35am – Dexethasone – steroid to help swelling
– Zantac – anti acid in stomach.
2:15pm – Pain meds
See how he does tonight and check pressure tomorrow. Will take tube out tomorrow if all goes well tonight. Sutures on tube site after tube is removed – will be removed in a week. Sutures on the back of neck can get wet but not submerged – Pat dry. They will come off on own.
Follow up in 10 days with Dr. Kaufman.
Dr. K on jury duty today – possibly tomorrow too.
Dr. K will see us Wed – depending on Jury duty to talk about discharge.
General diet – eat what is tolerated.
At home care: Steroids to be given at home.
Staples/Stitches taken out at appointments.
Can there be a CT before the tube is taken out to prevent having to do this again?:
No = not necessary due to radiation exposure. They can tell the pressure by the tube. Because of a big surgery and on the brain – radiation is too much for the brain.
Ate breakfast and shortly after had breathing treatment (with PEP)
About 930/10am – had focal (L) seizure.
Put on oxygen.
Rushed into CT – everything ok there.
Gave medication/sedative to stop the seizure.
Back up to ICU – they hooked Ryan up to an EEG for 30 minutes.
Xray to see if he aspirated.
Nasal tube in for extra breathing airway.
Dr Block on for next 24 hours.
Resting – sedated
120pm: Restless – wants thumb.
125pm: O2 taken off – got thumb.
Tube unclamped – draining while crying.
130pm: Nasal tube removed.
135pm: Dr. Atwood accessment – he’s hungry!
Dr. Scalon – wants Keppra – Anti seizure medication administered.
145pm: Clear liquids for now.
2pm: Anti seizure medication started – grape juice/pedialite given.
205pm: Dr Verma – Neurologist does not work with Dr. Kaufman or Dr. Lew.
230pm: Ibuprofen given.
Focality – eyes to one side.
320pm: Blood drawn to check electrolytes.
4pm: closed the clamp
410pm: Dr. Joseph – Seizure came from the right side. Does not know what caused it. Is more susceptible to having another. Keppra for a couple months – is having ICU contact genetics to have them come down and look at Ryan and talk about testing.
4:15pm: one of the staples in Ryan’s head is coming out on it’s own.
930pm: Respiratory therapist came to do treatment. TJ explainted to her he was not comfortable with doing the treatment without talking to the doctor first. He asked why Ryan still needed the treatments if he is having no repiratory issues. Her response was that Ryan had a chest x-ray done on 9/21 in the AM and the doc was concerned about his xray results. Why were we not informed there was a concern?
930pm: Nurse informed me that they were switching to the oral version of the keppra which will be taken twice a day.
Wednesday Sept 22.
445am: Blood drawn for electrolytes, blood culture, CVC because heart rate was going so low (low 50’s) testing for infections.
1130am: Dr. K came in and explained the surgery procedure, said everything went well. Looked at Ryan’s stitches and said it doesn’t look to be bothering him looks good. He stated that he doubts that the surgery is what caused the seizure yesterday. Dr. K also said Ryan’s blood work looks good. So anything could have caused the seizure.
12pm: Ate peaches – up with Aunt Abby – very restless.
12:15: back in bed, resting.
1pm: Sleeping peacefully.
230pm: still sleeping
3pm: medication – antibiotic..
430: Awake – Hungry. Ate peaches, eggs, yogurt, watermelon, juice – not interested in the bottle. Rubbing head.
5pm: pain med – Ibuprofen – very cranky.
525: Genetics – Dr. David Bick here. Dr. Bassel will stop tomorrow – believes testing will be done while here and covered by insurance. Wanted to know how long Ryan is staying – will check with Dr. Fant-Montgomery who Ryan saw in May. Will be back tomorrow – not sure what time.
5:35: Ryan awake and alert – trying for BM.
545pm: Ryan asleep
HR: 70-100 still irregular
640pm: ICU nurse said we’ll be here through tomorrow night at least. Move back upstairs tomorrow. They are monitoring Ryan for seizure yesterday and in ICU due to being able to monitor ICP.
745pm: Keppra given orally with lots of cheerios and goldfish. Waiting on dinner tray.
Noticed redness in cheeks – went away after eating.
8pm – ate ½ of strawberry yogurt, 2-3 noodles (Spaghetti) was full after. Saving peaches for am or during night…?
830pm: Albuterall treatment – tolerated it very well. Groaned a little but not much.
9-915pm – Fell asleep
Thursday September 23, 2010 – 1am Ibuprofen
2am-back to sleep
Up every 15-20 minutes – seems to be fighting sleep
350am – gave IV morphine so he can get some peacefull sleep again.
8:15am – up for the day…?
830/845am: eating lots of goldfish. Finished a full cup of peaches.
9am: Respiratory therapist cam in to do albuterall treatment – I told her to come back in an hour.
930am: Ryan is laying down resting watching Super Why.
Nurse said doctors should be making rounds anytime this morning.
9:25am: still no BM
HR: 72 – still irregular
SPO2 – 100
925am: Genetics came in – took Ryans chart to review and will be back shortly to discuss.
10am: Genetics resident came in – asked questions for any updates since last appt with Dr. Fant-Montgomery. Said we will do SMA and Chromosome micro array here in the hospital. Insurance doesn’t need pre-auth for inpatient.
Albuterall – Nurse talking to doc about stopping all treatments.
310pm: Genetics came and took a look at Ryan. The doc stated just off of looks its possible Ryan could have Smith and Megenus syndrome. The doc thinks that the micro array test will be worth the while and thinks its needed. He said he will ensure that they get the test approved before doing it to make sure we don’t get charged. He also said the test and will come and talk to us about it.
Friday September 24, 2010:
Ryan – very alert crawling and moving around everywhere in the crib.
11am: Genetics – Dr. Basil. Updated him telling him we will go ahead with genetic testing – chromosome micro array. He mentioned if we make a payment plan, due to insurance not covering the cost, the cost would be cheaper.
TJ spoke to Carolyn Mills – case manager at Tri-North/Healthnet Services – explaining the genetics impatient testing.
1115/1130 – Ryan given perceset for pain for tube to be taken out.
1200/noon – Ryan ate ½ of his lunch. Chicken nuggets, baby corn dogs and chocolate milk.
1pm – Tube taken out. Fluid ran down the back of Ryan’s neck and back. Dr. put one staple where tube came out. Ryan cried for 10 seconds and was done.
450pm – Dr. Kaufman came in.
MRI in 3-months
possible discharge tomorrow
Activity as tolerated
Tylenol for pain.
Antiseizure meds for a couple months.
8-10 days for follow up appointment to remove staples and stitches.
Will check on genetic testing.
Therapy – return in a week – will just tucker out faster.
Wash fluid drainage throughout the night.
Played in playroom.
Ate a GOOOOOD dinner. Chicken, turkey, ham, roast beef, gold fish, peaches.
650pm – Dr. Joseph:
Assuming cause of seizure is post op.
Very unexpected. Needs to be watched at ALL times, especially in water. Will get literature on seizures.
EEG in 4-6 weeks.
Anti meds for 6 months.
All care givers need to be aware of seizures.
If end up in ER, Dr. Joseph needs to know ASAP!
Seizures – seizure safety is HUGE.
Time all seizures.
Triggers – lights, illness, lack of sleep, some types of foods –
If it lasts more then 3 minutes – CALL 911.
Infections: fever, drainage, swelling, irritability, pain when it’s not going away with meds.
830pm – blood taken for genetic testing.
Ryan slept the whole night – only waking when the nurse came in to take vitals and check on him.
Saturday – Woke up at 8am to fluid on sheets from the back of his head. Paged Neurosurgery on call. Dr. Cochran came in and said the fluid is from the stapled area. Might be spinal fluid. Sometimes it takes up to 24 hours for the skin to start growing back together. He said we’ll stay in the hospital until there has been no drainage for at least 24 hours. Keep elevated for next 24 hours to see how/if it drains.
Ate breakfast – ham omelet, peaches, gold fish.
945am: Dr. Cochran came in and put 2 more staples where other staple was.
1030-11am – Played in the play room.
1130 – albuterall – Dr. Cochran ordered CT for sometime today.
CT at 330pm. Everything came back just fine.
Decided one more night wouldn’t be a bad idea…just in case!
Sunday – Discharged!!!