On Saturday March 28 2009 late in the afternoon Brookelyn awoke from a nap with a fever, which was treated with some Tylenol. She was starting to get some teeth under her gums so we didn't think much of it. Later that night she had some vomiting so we stopped giving her formula and started her on Pedialyte. She went to bed and slept all night. The following day, Sunday, we continued to give her Pedialyte and Tylenol. She seemed to be getting better all day. That night she went to bed and slept till 5:30am Monday morning. She awoke with a very high fever accompanied with a clenched jaw, lethargy, and a moan like cry that we will never be able to forget. We tried giving her a bottle of Pedialyte and she would not take it. We then heated up a bottle of formula which she only pushed away. Then we immediately took Ashlyn, our other daughter, to her Grandmas house and rushed Brookelyn to the emergency room at Riverside Hospital. There she had blood and urine drawn right away and they came back to tell us she had a urinary tract infection. The emergency room doctor had paged Brookelyn's pediatrician, Dr. Iskander who did not respond. The emergency room doctor then proceeded to prescribe an antibiotic to treat the urinary tract infection. He was not comfortable with the way Brookelyn was acting so he ordered a CT scan. After the scan, the emergency room doctor admitted us to the pediatric floor. Once up there they had preceded to page Brookelyn's pediatrician, who still did not respond. While waiting for her pediatrician to come take a look at her a nurse thought she heard a murmur in Brookelyn's heart. After that her doctor decided to come take a look at her and immediately ordered her to be airlifted to University of Chicago. While they were trying to get everything lined up for that her doctor ordered an Echo and a Cardiograph to check her heart. Soon to find out University of Chicago would not accept us. We then decided to have them try to get us to Loyola University. They sent the helicopter over right away and Brookelyn was soon in the air. We rushed home and grabbed a bag of clothes and took off on our way to the hospital, as we were not allowed to ride in the helicopter. As soon as Brookelyn was in the air the flight crew called in to Loyola's Pediatric ICU and relayed Brookelyn's symptoms to the attending doctors.
As soon as we arrived at Loyola Brookelyn was in her room all hooked up to the monitors. They then told us their cardiologist reviewed the scans from the other hospital and found nothing wrong with her heart. They then proceeded to tell us they believed she may have Bacterial Meningitis, which they would need to perform a lumbar puncture, also known as a spinal tap to test for. So at that point we had to sign consent forms and went to the waiting room. Soon after that we were told she did have bacterial meningitis. Bacterial meningitis is a bacterial infection of the CSF, cerebral spinal fluid. Once the fluid is infected it begins to attack the meningies, the protective membrane over the brain. Once she was diagnosed she was put on a ventilator, to help her breathe. She was also sedated and put on pain medicine. That night she also needed to have a blood transfusion, because her hemoglobin levels were low. The following day they needed to put a central line in, an IV that is inserted into one of the large veins in her leg. With the central line they are able to deliver IV fluids and pull blood for testing from it easier than a normal IV. They also had sent her for another CT scan which they had discovered she had suffered multiple strokes. They most likely occurred between arriving at Riverside and being transferred to Loyola. Soon after all of this Brookelyn had started to develop a seizure disorder. She would seize on average nine to twelve times a day. They then started her on an anti-seizure medication called Phenobarbital which she had a severe allergic reaction too and turned bright red all over her body. They got that under control and decided to give her a different anti-seizure medicine. Soon after they had discovered the reason for her seizures was a disorder called SIADH, syndrome of inappropriate anti-diuretic hormones. What that means is her body could no longer regulate the amount of electrolytes. The electrolyte her body was inappropriately managing was her sodium and that was causing her seizures. They began to manage that by restricting fluids and giving her IV fluids high in sodium.
The next few days were very critical for her. She soon had problems with the central line drawing and we soon learned after an ultrasound of her leg she had a clot in her left leg. They would begin to treat that with Lovonox, a twice a day shot for the next three months. They still needed central access though so they needed to place another central line, but this time it was inserted into a large vein in her neck. Soon after they inserted the line in her neck they started having problems with it drawing so they decided to try to rewire it, a process where they insert a small wire through the IV and then pull the IV out and place a new line over the wire and pull the wire out. That way they would be able to reuse the same vein. For that procedure we were asked to wait in the waiting room. A little after they started the procedure they came and got us and told us they were not able to get the line rewired and would need to try another location. They put one in her right leg and had an ultrasound of her neck done to look for a clot. The ultrasound didn't show any clotting in her neck and it was determined that it was anatomy that was causing problems with the line. They then talked to us about having a PICC line, peripherally inserted central catheter, put in. It is a central IV line that was inserted into her left upper arm and runs all the way through her shoulder and through her chest and stopped just before it got to her heart. It would be inserted in an operating room with the use of an ultrasound camera as it is a very sensitive procedure. The PICC line is a more permanent line that stays in for a more extended period of time. Soon after the PICC line was inserted they decided to start stepping down the ventilator and letting her start trying to breathe on her own. It took some time, but she was soon breathing on her own and they extubated her. Finally she was without the ventilator, so they started to lower her sedation. She had been on sedation so long she was having problems with withdraws and was alternated between a few different medications to help her come down from the sedation.
Throughout all of this she had been getting ct scans every few days with a few MRIs in between. After the neurologists that were following her had reviewed how her scans had been progressing and her physical status they contacted neurosurgery. Neurosurgery had told us she has some extreme signs inter cranial pressure. The cause of the pressure was a buildup of fluid under the durra. The durra is the fleshy lining under the skull which has a layer of fluid between it and the brain. The way they would need to fix that was insert a subdural drain, which means to make an incision in her scalp and drill a burr hole into her skull and then take a scalpel and cut the durra and place a drainage tube over the brain and under the durra. The surgery went well and was draining appropriately. The drainage tube was then attached to a drain that uses gravity to control the amount of fluid that is allowed to be evacuated. The drain is a very delicate devise, because everyone has a low amount of pressure in their brain, but you can't have too much or too little. While she was hooked to the drain she was not able to be held or moved from bed, as the drain had to be hung at ear level. The drain was left in for a little over a weeks time and then removed. After the drain was removed she had many CT scans and MRIs and they informed us they believed she had hydrocephalus and would need a shunt placed at some time in the future. They said they didn't believe it would be anything we would be dealing with during our hospital stay and may be placed some time during or after her rehabilitation. They were planning on transferring her back and forth for monitoring of the issue and explained signs of increased pressure.
Around this time they had started trying to figure out how she may have contracted this very serious infection. They had noticed in her CT scans and MRIs that her inner ear has some significant damage to it. They said that may have been caused by the increased pressure in her skull, because the inner ear passes through the cerebral spinal fluid which is the fluid that causes the pressure. After further examination they discovered she had mastoiditus, which is the infection of the bone structure behind the ear in both ears. Another theory they had was that she may have a kidney reflux disorder. To test this they had to give her a VCUG test, voiding cystourethrogram test. In this test they evacuate the bladder of all urine and then fill the bladder with a radio contrast material. They then take an x-ray video or fluoroscopy of the flow of the bladder and watch the contrast material. The contrast material in her instantly back-flowed into her kidneys. They then diagnosed her with kidney reflux. When diagnosed they score your reflux and for her they called it a three or four. The scaling is one being the mildest case and five being the worst. The complication of kidney reflux is that an infection can easily be carried back to the kidney and then sending the infection to the blood stream. For the kidney reflux they have prescribed prophylaxis antibiotics. They hope that she will grow out of it so they will have to follow up with another VCUG test in the future. If it does not improve as she gets older they will diagnose it is faulty valves and will need to have surgery to replace them.
Shortly after that they believed we were on our way to being released to rehab, so they had speech therapy come and give her a swallow test, which she was not able to do. They then conducted an upper GI study, gastrointestinal study. In an upper GI study they use a radio contrast material and send it down the esophagus and into her stomach and let her begin to digest the material while taking an x-ray video. Everything came back OK with that test. At that point they decided she needed to have a G-tube, Gastric feeding tube, as she would not be able to have a NG, Nastrogastric tube for an extended period of time. A NG-tube is a tube passed through the nostril and run down the esophagus and into the stomach. A NG-tube can be used for a short period of time before it is needed to be changed to a G-tube. The G-tube is place directly into the abdomen. To place it they run a scope down her esophagus and into her stomach, which then has a light that is shined through the abdomen and used to locate the best spot for placement. They then take a needle and inset it were the light is and then run a tube over the needle and put a flange on the inside of the stomach and one on the outside of the abdomen. After she had recovered from the surgery they decided we could move from the PICU to the IMC which is an intermediate care department where she would still be hooked to monitors, but is should be a little more relaxed atmosphere for her.
We were in the IMC for two days and it was the best anyone had seen Brookelyn since she had been sick. On the third day she went down for a nap around 9:00am and she awoke around 10:00am and was showing signs increased inter cranial pressure. We had them page neurosurgery and infectious disease and they arrived within minutes and shortly after they had arrived the PICU doctors were there as well. There were about twenty five doctors and surgeons running around calling the OR and getting consent from us to perform the surgery. They stopped her feeds and pumped her stomach out for surgery. They rushed her down and we skipped pre-op and went directly to the OR. We gave her some kisses and went to the surgery waiting room. They had to perform a ventruiculostomy on her. That is where they place an incision in her scalp and then drill a burr hole in her skull and then place a catheter into her ventricle which is located in the center of the brain. After surgery they had placed a drain similar to the one used for her subdural drain except this drain was placed into her ventricles, but the same rules applied. It had to be hung at the same level as her inner ear sat and was set to a certain pressure setting to help maintain the correct pressure in her head. This type of drain is called an EVD, external ventricular drain. They also hooked up a transducer to the line which would measure the pressure on the computer screen so they would be able to tell if her pressure began to increase again and they would need to adjust the settings. This EVD would need to be in place for two weeks. In normal circumstances they would have placed a shunt instead of the EVD, but they wanted her to finish her antibiotic treatment for her bacterial meningitis. Normal treatment is only ten to fourteen days, but her treatment had been extended to six weeks due to the severity of the infection and the complications which have occurred along the way. Ever since she had been sick she had been very hypertensive and would cry and become very upset. During her fits she would dump thirty cc's of CSF in about sixty seconds, which is very dangerous as a child her age is only able to produce fifteen cc's an hour. Because she was dumping so much fluid so fast it was causing her ventricles to suddenly shrink and allowed her brain to shift which tore some veins that got to her brain. This caused some hemorrhaging, bleeding of the brain, which is a very serious problem. In her situation it was very hard to find a good solution because she needed to have the EVD in the open position because she would build up pressure if it was closed and that would hurt her. If they were to leave her EVD in the open position she would go into a crying fit and dump too much fluid and cause hemorrhaging. The fastest simplest solution anyone could come up with was to sedate her again, which they did. The neurosurgeon was not comfortable placing the shunt while she was so hypertensive, they needed to be able to diagnose physical symptoms to tell if the shunt is working properly because it is all placed internally. After a week on sedation they came up with an idea to put an internal shunt valve on the EVD. They have never heard of anyone doing this before so it was kind of an experimental thing. A shunt valve has a volume limiter in it so it can't dump such a high volume of CSF all at once. After that they started to lift sedation and it seemed to be working well.
In cases of bacterial meningitis they must also test for hearing and vision. To test hearing in an infant they place two ear plugs that have a small speaker in them on her ears and then attach electrodes onto her head that measures the neuron signals to and from her brain to look for a response. In the preliminary hearing exam they did not get a response. They then had to schedule a more extensive test to test for different frequencies and decibels. This test was supposed to take three hours, but they finished in a half hour because they could not get a response from either ear. They then diagnosed her as deaf. Shortly after this they came to give her a vision test. This test is done almost the same as the hearing test except they use a flashing light, and a few more electrodes to look for neurons responding in her brain. The vision test went much better. They are unable to tell if she can register what she sees, but they can tell she can see.
As soon as the antibiotic treatment for the meningitis was completed they were able to place the shunt. Having the internal valve on the EVD was a great thing for knowing where they would have to set it and as for the neurosurgeons feeling comfortable with placing it as her agitation was a little more under control things were underway. She would be scheduled for Thursday to internalize the shunt. They would be placing a VP shunt, ventriculo-peritoneal shunt. A VP shunt is placed into the ventricle and then run behind the ear where there is a valve placed, from there it is tunneled down her neck and her chest into her abdomen where it is placed in the peritoneal cavity, the cavity where your organs in your abdomen sit. The peritoneal cavity is a good place to drain the fluid as the organs are all already fluid coated and can absorb the CSF easily. The surgery went well and she recovered greatly. The following Sunday she got her four month vaccinations because she missed them from being hospitalized. They gave her a few days to recover and she was off to rehab.
After about a week at rehab she seemed to be doing alright. At rehab they had been working on keeping range of motion and getting her breathing under control. They said due to her injury she had become a lateral breather. Normally you breathe up and down with your abdomen and she was breathing in and out with her rib cage. In normal circumstances you would only breath latterly if you where in distress, she on the other hand was breathing that way because of the damage to her central nervous system. They worked on this with a lot of breathing exercises mostly consisting of holding her rib cage in and trying to settle her down. It seemed to be working though. She had also been working allot on transitioning. Since she had such a bad injury to her central nervous system she couldn't handle be transitioned from out of bed to someone holding her without becoming very upset. To work on this they had been laying her on a mat and changing positions and then trying to get her to calm. When they first started therapy she would not be able to calm at all after any transitions. After about the first week she could handle one or two transitions to calm in a half hour session. Things seemed to be going smoothly and then one night she had some suspected seizure activity and we where back off to Loyola the next morning.
After we arrived at Loyola they gave her another CT scan. They also ordered an EEG and soon after they read the CT scan they ordered an MRI because they found a spot on the back of her brain the size of a strawberry. The MRI would give a better picture as to what the spot was. They did the EEG the following morning and after being reviewed by the pediatric neurologist he said it showed some abnormal spikes that where seizure activity. They had also diagnosed her with a shutter disorder. A shutter looks almost like a chill, but much more violent and only lasting usually three to five seconds. To treat the suspected seizure activity and the shutter disorder they increased her anti-seizure medicine. Later that evening they sent her for her MRI. The neurosurgery team had told us they believed the spot on her CT scan would probably be one of a few things, the worst case scenario it would be a thriving infection and it would be need to be surgically removed before it could reach the shunt and infect that. It could also be an infection still from the original infection and that would need to be addressed to the infectious disease team and they would decide treatment. It could also be a fluid pocket and depending on how it looked may need to be surgically removed as well. That next morning it was determined they it was a blood clot from when she had the subdural bleed when she dumped so much fluid at once. They decided in her case it would be best to leave it alone and hope it will dissolve on its own. They sent us back to Marianjoy rehab hospital the next day.
When we were back at rehab things seemed to be going well again and they had adjusted her medicines again and her agitation seemed to be a little more under control. She began to start moving her arms a very little bit and would accept a pacifier in her mouth and not gag. Things where starting to look really well for her. The shutters had stopped and no more seizures until she began to do something that looked similar to a startle. It didn't seem bad at first but it kept getting worse and worse throughout the weekend. That Monday we told the attending doctor at Marianjoy about this and she became instantly concerned that it may be infantile spasms. She told us that an infantile spasm is a rare type of seizure that if left untreated can cause severe retardation or death. We where soon on another ambulance ride to Loyola. After we where there they got some blood and admitted us. The pediatric neurologist came and told us there are a few choices if it was infantile spasms. We could get a medicine called ACTH, Adrenocorticotropic hormone. This treatment is a very strong hormone that may be able to cure her EEG. It is a very costly treatment that is only available for use in the United States. She would need four vials for three weeks of treatment, but treatment could be as long as six weeks. The ACTH would cost up to $25,000 a vial, so $100,000 to $150,000 for treatment. Another option was Prednisone which shows about the same results as the ACTH in clinical trials, but has not been practiced for very long and lacks support. The final choice was Topamax, which can cause lots of problems with language and communication, which would be difficult for Brookelyn because she is already deaf. After talking about it allot we decided to try the Prednisone. They soon sent us back to rehab. She continued to have many seizures and it has now been a week and we are trying to decide if we should continue trying the Prednisone or if the ACTH would be a better choice to try.
After having a bad night at rehab she was soon readmitted to Loyola. At Loyola she had a 24hour EEG done which showed she was definatly still having infantile spasms. It also showed she had hypsarythmia, a type of seizure that causes scattered brain wave when she is asleep. Luckily hypsarithmia is a benign try of seizure, but none the less it is still there. They then decided to introduce Topamax to help control the spasms because the Prednisone alone wasn't helping enough to make anyone comfortable. Our intent was then to go back to Marian Joy, but they would not accept us back for a reason we were not able to find out. We where planning on trying to fight to go back because we liked all the nurses and therapists there, but when we went back to get the progress reports we had from her therapy all of our stuff was gone. They had put it in boxes in the basement and they had even lost a lot of our stuff. We were pretty upset with Marian Joy at that point and decided to choose another rehab hospital. We chose to try and go to Hope children's hospital. They soon began the transfer process which immediately came to a halt because they would not accept us. They wouldn't take us because we where back and forth to Loyola and Marian Joy. Also the fact that Marian Joy Wouldn't take us back didn't help. That was all the explanation we got. They suggested trying a different rehab center to send her to, but at this point we just decided to go home. They then began to get us all of our medical supplies. On July 3, 2009 we were finally on our way home. Although we were at home we were still at Loyola a lot for doctor appointments. We where soon settled in and very glad to be home though.
After we where home we had a lot of doctors to follow and therapies to get set up. We had a few doctor appointments the first week. At the appointment with her peds neurologist they put her on a sustained release Topamax hoping it will help a little more with the infantile spasms. They also started tapering the steroids. We also had surgery to switch the PEG tube out for a Mickey button. That was much nicer of a design because the hose was detachable and all that is left is a small port about a 1/2 inch thick and about the size of a dime. The day after the surgery o put the Mickey button in she had an MRI. After the MRI we had to make an appointment to go see her peds neurosurgeon. At that appointment they told us the spots of infection where almost completely gone, but the ventricles where still too large in his opinion though. They turned down the setting on her shunt to try and let the ventricles shrink a little more.
As her Prednisone dose tapered down her spasms started to get worse again. They soon became much worse as the dose became lower. She had a really bad night where she was pursing her lips and shaking between spasms. We stayed in close contact with her neurologist because they were getting worse. They soon had us bring her in and she was re admitted. We then began to start a ketogenic diet, a diet that consists of eating no carbohyrates and only fats. This diet was soon put on hold because she went into what they called a somnolent state. A somnolent state is like a comma in which she could still breathe on her own. This lasted about a week and a half, during this time she had many tests done to try to figure out what may be causing this condition. All on her own she started to wake up little by little and she was soon up for around three to six hours a day.
Even though she was awake now she was having a lot of problems with seizures. One night soon after waking she had a really bad seizure lasting three hours. During this seizure they had called a rapid response call. A rapid response call is where they page a number of doctors to the room and call rapid response to the room over the intercom. The rapid response call was called not only because they were not able to stop the seizure, but she was also starting to have some compromised breathing, her heart rate was over 220 and her repertory rate was over 90. She soon had to have a nose trumpet put in by a repertory therapist. A nose trumpet is a small tube put in through the nostril and goes down her through so that her airway is held in an open position. Soon after three long hours she finally started to relax and soon fell asleep. A few days later we were up against the same thing. Her heart rate and repertory rate was back up she was having trouble breathing again. There was another rapid response call called again. This episode lasted two hours. Everyone was concerned about this and she was visited by an ear nose throat doctor and the sent a scope down her throat and didn't see anything that was an emergent problem. All the doctors where looking for an answer to help suppress these seizure. They did another continuous EEG. We got one of these episodes on the EEG which is exactly what they needed to be able to diagnose what was going on in her brain.
They soon diagnosed the episodes as seizure activity along with what they call an autonomic storm. An autonomic storm is where her body can't regulate her autonomic functions like controlling her heart rate, repertory rate, blood pressure, and body temperature. There is little you can do about these storms except try and stop them with IV Adavan as they happen. During all of this she was also having problems keeping her food down. They sent her down for an Upper GI study to determine if she had anything that may be causing this. In an Upper GI study they put Barium into her stomach through her G Tube and then watch as it is digested with a fluoroscope, an x-ray video. The Upper GI showed that she wasn't digesting. They then had us meet with the GI doctors and they explained to us that they wanted to do a better study that would be able to give a more accurate diagnosis. This study is a gastric emptying study. During this study they put some radioactive material into her stomach and take 3-D pictures of it. This study showed that she was digesting less than 1mL an hour. After learning this we needed to decide on an alternative way of nourishment pending what they see after they go in with a scope. We decided to go with a Gastric Jejunum Tube. A GJ Tube is a tube that is placed through the same hole that her G Tube was placed, but it goes through her stomach into the small intestines and rests into her Jejunum. This surgery was to be done at the same time as they were going to do the scope, if her stomach looked ok with the scope. Soon they did the scope and everything looked ok so we had them place the GJ Tube. Soon after we had arrived back in her room we noticed the Interveiniuos Radiology Lab placed the wrong style tube and had caused some major inconviences. The tube needs to be changed every month though so we just rigged up a temporary solution.
Also during this stay we had a meeting. In this meeting they explained to us that the top part of her brain is most likely damaged beyond recovery. Also the brain stem, the part of the brain that controls your bodies' basic functions, may be the only functioning part of her brain. They explained that regaining motor skills or ever being able to walk or talk may no longer be a possibility. They explained to us that if she where to ever get pnominua or catch the flu, or have a seizure they can't stop they would need to induce a comma. If they would have to induce a comma chances are she would not be able to wake up. So we were left with the decision of signing a do not resuscitate/do not intubate because if we don't we might be stuck with the decision to pull the plug or if we want her to pass naturally.
After three weeks at home Brookelyn was scheduled to have her GJ Tube replaced to the one that was originally supposed to be placed. We went in at 7am to have the surgery and where discharged by noon. On the way home we noticed she smelled like poop. When we went to change her we noticed the poop smell wasn't coming from her diaper, but was coming from around her GJ Tube. We then called the general surgeon back and they told us to go back to the IR lab right away. As soon as we arrived they looked at the site and took her back in to the OR. While in the OR they found she had communication with her colon. This was a very serious issue. They placed a tube in to hold the hole and plug her colon the best they could till they could get her into the or in the morning. She was then admitted to the hospital. A little while after we where upstairs she started gagging a lot, but wasn't puking or anything. Then with one big gag she started to vomit feces. Then her oxygen saturations started to drop and got as low as 50%. They then called another rapid response on her. The soon got her on oxygen and stabilized. They hooked the folly they had in the G Tube hole up to a gravity bag, a bag that helped pull anything out of her stomach as if filled. They said if she vomited again or dropped her oxygen saturations again they would need to rush her into emergency surgery. Luckily she made it through the night with few other issues. She bumped all the other patients that where scheduled for surgery back and went in for surgery right away in the morning.
In this surgery they would cut her abdomen open and pull her colon out and suture the hole in it closed. They would try to save the hole in her stomach and suture it to her abdomen so she wouldn't need another hole in her stomach for another feeding tube. They also placed a tube directly into her small intestine for feeding. They then took samples of the fluid from her peritoneum to check for bacteria. They did a graham stain test to the fluid and it did show bacteria. Because of this they needed to externalize her shunt tubing so the bacteria would not go back up the tubing and infect her brain again. The surgery went well otherwise. They brought her back up to the PICU. They brought her back up to the PICU still on the ventilator, but she was taken off it the next day with little trouble at all. It now seemed as we would be playing the waiting game till they would decide on when to reinternalize the shunt. They took samples of the peritoneal fluid to test during surgery and sent it to the lab. The Infectious disease team looked over the bacteria that grew and custom tailored a set of antibiotics to work well with the bacteria that was found. After discovering the bacteria they decided a ten day treatment would be necessary for Brookelyn. After that they should be able to reinternalize her shunt, and after recovering from that we should be able to go home if we don't have any other complications.
A couple days after surgery Brookelyn was having some trouble keeping her oxygen saturation high enough. They did a chest x-ray and it looked like she had a slight Atelectasis, a condition where some of the air filled sacs in your lungs don't fully inflate or become completely deflated. This differs from a collapsed lung, but is often referred to as a collapsed lung. It is also more common after abdominal surgeries such as the one she had. The most basic treatment for this it to put her on oxygen which they did and then give scheduled Albuterol treatments and chest pounding therapy multiple times a day. The following day they turned her oxygen down a little bit and she seemed to be doing quite a bit better so they continued with the Albuterol treatments and chest pt and she was soon off the oxygen and saturating on her own. They did a repeat chest x-ray and the Atelectasis seemed to have almost completely cleared after only two days of treatment, but she would continue to get Albuterol treatments and chest pt as long as she is bed ridden. For the most part it was back to the waiting game.
Then almost out of nowhere on Wednesday October 14, 2009 Brookelyn began to smile! There was nothing that could have been more uplifting and refreshing! It just broke everyone's hearts to FINALY see her smile again! Then one morning while trying to ride out the antibiotic treatment her J tube became plugged while the nurse was giving her morning medicines. They tried many things to try to unplug it but with no luck they decided it needed to be changed. After gathering all the materials needed to perform the task at hand they were ready to change it out bedside. This normally simple task soon became rather complicated, when they pulled the old tube out she began to bleed quite a bit through the hole in her abdomen. This wouldn't have been so concerning if it hadn't been for Brookelyn's rather complicated medical history already. They then ordered a bedside GI study to be done. In this procedure they just take a small amount of contrast material and inject it into her J tube and take some x-ray pictures of the area and watch where the material traveled. This luckily came back ok and she was soon able to eat again.
After some careful consideration on when to reinternalize the shunt neurosurgery and general surgery decided that it might be best to wait a full four weeks, as if they placed it too soon there would still be scar tissue forming and if it formed around the shunt tubing it would restrict the flow and it wouldn't drain properly and we would need to re-externalize and start the tedious process over again. This being said we were going to be hanging out for a while. At about five weeks after the original surgery they decided it is time to reinternalize the shunt. While in the operating room they got word that the most recent spinal fluid sample, which had since cleared up of any bacteria from the bowel perforation issue, had bacteria in it. They found it was a non-communicable staph infection in the sample that was from two days earlier. They then had to make a decision as they already had her opened up on the operating room table ready to internalize. They decided to reinternalize and start an antibiotic treatment and hope that it would clear up. We then started another ten day antibiotic treatment. After the internalization she had been behaving strangely and this was very concerning to many of the people taking part in her care. The decision to wait to tap the shunt to see if there was any bacteria was made carefully considering the fact she was on a strong antibiotic the actual bacteria may not show up if they tapped the shunt. So then started the waiting game again…
A few days after her surgery she seemed to be having a lot of abdominal pain and just seemed to be very uncomfortable and fussy. They then decided to do a CT scan of her abdomen and her head to make sure everything seemed to be working ok and there weren't any new issues arising. These tests came back normal and no other explanation seemed to be able to explain her discomfort except maybe she had an infection bothering her, which worried all of us. So once again we were stuck playing the waiting game for her antibiotic to finish. Once her antibiotic treatment was complete they waited a couple days for the antibiotic to be out of her system so we would have the best chance to get the bacteria to show up in the culture if there was any. A few days after her antibiotic completed they decided to go ahead and tap her shunt. After the test finalized they said that there wasn't any bacteria and began to get things in order to send us home. A few days later we were finally on the way home again, and just in time for her first birthday!
About two weeks after we were home she started to have fevers and just seemed uncomfortable. We then took her to her pediatricians' office and he took a sample of her urine and because her fever was so high he said he was admitting us to the hospital. So once again off to the hospital we go. Once there we got word that her urine came back as having a urinary tract infection. They also drew some blood to test. They started her on antibiotics right away they night. The next day they wanted an ultrasound of her kidneys, because she has kidney reflux and they need to make sure the infection didn't back up into her kidneys and cause any more problems. That night they got the bacteria that they found in her urine to grow and had positively identified the species so they changed her antibiotic to one that would work better for this bacteria strain. We told them that something else seemed to be bothering her, because she was gagging every few minutes and just seemed ever so sore in her abdomen. They said that the fever, abdominal pain, and gagging could all be caused by a urinary tract infection and to just give it twenty four hours to let the antibiotic work and if she wasn't seeming better then we would be a little more concerned that it might be something else.
After the twenty four hours she was still having a lot of abdominal pain and fevers along with a whole lot of gagging so they decided that she needed an abdominal CT to look for an abscess. They got the CT completed and it seemed to show nothing out of the ordinary. That weekend we had an attending peds doctor that had followed Brookelyn for a while and he was concerned with her status and while performing his daily exam he noticed she didn't have any bowel sounds. This symptom along with all the others led him to believe that they needed to tap the shunt because these symptoms where common with peritonitis. Peritonitis is an infection in her abdomen and if she did have this it would be very likely that her shunt and possibly her brain may have been infected as well, because her shunt offers an express highway from her abdomen to her brain. They soon after tapped the shunt and the neurosurgeon said the fluid looked clear and that was a good thing. Later that night we got word that her fluid came back positive with staph and they needed to take her shunt out and put an external ventricular drain in right away and get her started on appropriate antibiotics to get this taken care of. So within the hour, she as in the operating room and getting externalized. After she came back upstairs she was left on the ventilator for a few days, but when the time came she came off the ventilator with no problems. They then needed to determine the appropriate dose and length of the antibiotic treatment she would need before they would reinternalize her shunt. And once again it was the waiting game.
She had an external ventricular drain in for about a month with no real issues. When they got the results back from the shunt itself the part of it that is in her abdomen came back positive along with the valve itself, but the tip of the catheter that was in her brain never grew any bacteria. So from that point they had custom tailored another antibiotic treatment to work for the bacteria found in her spinal fluid. She was on a three week antibiotic treatment and then they waited a few days after the antibiotic treatment was done to make sure the fluid stayed negative before they reinternalize her shunt again. Finally it was time to reinternalize again, New Year's Eve 2009 Brookelyn was heading to the OR to hopefully do this one last time for a good while and start the year off right. When they put the shunt back in, they placed it on the opposite side of the brain than it was originally on. It went in smoothly other than the fact they had to trim away some scar tissue in her abdomen to get a good place for the shunt to drain, and run the drain tubing across her chest to end up in a nice open area. All her G Tube and J Tube surgeries have her left side of her abdomen pretty much full of scar tissue and hard to place a drain on that side.
Soon after she was internalized again and had a few days to recover they had us on our way home. After we were home she started therapy. She started off ok but is quite a bit more than she had in a long time now in terms of movement. It isn't very controlled, but she is moving and it is wonderful to see. She had recently gotten a stander, a device to help her stand in a upright position to help her bones and joints to form properly. She is doing wonderful with it. She seems to like standing up. We also have plans to get her pic line removed in the middle of June. They will be putting in another form of IV access. We have not determined if it is going to be a port-a-cath or a central line though. We are also going to be looking into cochlear implants now that she is a bit more stable as well.
