Posts
Overview:
- · Vomited black stuff
- · constant pneumonia diagnoses
- · Pancreatic inflammation and C-Def
- · Neurological storming
- · GJ Tube and other feeding issues
- · Nissen Repair
- · Blood Pressure and Cardiac arrest
- · Tracheotomy Placement
On December 11, Hunter woke up and vomited black colored emesis. Throughout the morning he seemed sluggish. After getting a bath and cleaned up he continued to spit up the black colored substance. I placed a call to his Nutritionist from Kennedy Krieger who stated that it was not a normal thing and to take him to the Emergency room. I took him to Anne Arundel Medical Center in Annapolis (AAMC). Upon arrival he did not vomit again, but did not test the sample I gave to them. He had a fever of 102.0F and his oxygen saturation was in the mid 80’s. He was given a chest X-ray and the ER doctor said it looked fine. They put him on oxygen and took blood and urine samples for lab work, but there were no immediate results. Since he was going to be transported Children’s National Medical Center (CNMC) in Washington D.C. because the AAMC physicians were concerned about a possible malfunction of Hunter’s VP shunt and they were not equipped to deal with shunt problems. All lab results were to be forwarded to CNMC.
He arrived at the CNMC ER where they reviewed the AAMC chest x-ray and they determined he had pneumonia, although AAMC’s doctors initial interpretation did not diagnose Pneumonia or any other signs of illness. CNMC’s evaluation resulted in a diagnosis of pneumonia in the in Hunter’s left lung. Hunter was still on oxygen and still having a fever. He was sent to the CNMC Respiratory floor. The next day Hunter was a bit agitated and fussy, but showed no other signs of distress. He was on minimal level (0.5l) of oxygen throughout the night and still running fevers ranging from 100 – 103.0.
During the evening of December 13, 2009, Hunter seemed more agitated than normal. After getting him calmed him down, I noticed that he had a blank stare and his eyes were fixed and downcast. I was unable to get him to direct his attention elsewhere. He was also jerking his right arm in a consistent flailing motion and I was unable to stop him by holding the arm still, as we normally would be able to do if the flailing was a result of his cerebral palsy. I finally called the charge nurse and ward doctor who suspected Hunter was having a seizure, so they administered Ativan to counteract the suspected seizure. This behavior lasted between 5 – 10 minutes from the time I realized what was going on until I called doctors. I don’ recall exactly how long the behavior lasted after receiving the Ativan, believe it was about 10 minutes. Shortly after this he fell asleep. He was placed on Keppra.
On Monday December 14, after returning to the hospital after going home, Hunter was not in his room. His nurse had stated he spiked a fever of 105.4 F and had another possible seizure. He was taken down to the PICU. During his stay there he was agitated and could not relax. Overnight he continued to have struggles.
On Tuesday December 15, due to his continue agitation Hunter was beginning to struggle to breathe and was placed on a BiPAP; however, this did not correct the erratic and forced breathing. He was then placed on a ventilator to stabilize his breathing. He was also placed on an EEG machine to monitor any seizure activity. Throughout the night, he was sedated. The results showed no major seizure activity.
Hunter remained on the ventilator until December 20, when they first attempted to remove him from the ventilator tube. After removal, Hunter’s oxygen saturation levels could not be sustained at a desirable level so he was placed back on the ventilator. Another attempt was made a couple of days later and he remained off the ventilator and placed on a CPAP. On December 25, Hunter was placed on the high flow nasal cannula, and continued to show signs of improvement. Also during his stay in the PICU we learned he had contracted C-Def and his pancreas was inflamed. He was placed on several medications; however there was no explanation about how his pancreas got infected. The cause of the C-Def could have been from constant anti-bacteria medications and/or the IV fluids of TPN and Lipids he was receiving.
The C-Def cleared up a bit, but his pancreas was still remained inflamed. He was transported back to the respiratory floor mid-January. Shortly thereafter Hunter began to have problems keeping his feeds down without vomiting. It was later learned that his Nissen Fundoplication had completely failed and was no longer helping prevent vomiting his food. (He had the first surgery done at 8mos old in February 2005) He was placed on a temporary set-up of a J-tube which was a G-tube with a NG tube functioning as a J-tube. While on this jerry-rigged, GJ tube Hunter began throwing up greenish yellow fluids. The G-tube part of this set-up was kept opened to allow these fluids to drain. During this time he continued to be on medication for his pancreas and he was noted to be having fevers and high heart rate. Several fluid samples were taken; however, the lab work cultures revealed no source for the fever. They later stated that his periodic high heart rate and fevers were believed to be the result of “autonomic storming.” He was placed on several types of medications to control the storming. Finally after a few weeks the temporary GJ Tube was falling apart so he was placed on a more permanent tube. On February 2nd once the storming abated and the pancreas infection cleared Hunter was sent home
.
Upon returning home Hunter showed signed of having difficulty handling his feedings. At this time he was Peptimen Junior to help digestion. Over the course of the next few days, Hunter found it difficult to sleep. He was also having trouble with passing gas, although his stomach remained empty of gas, his output of bile-like fluids increased in the amount draining from the G-tube. We would attach a newborn-sized diaper to the tubing to catch the bile and we were changing these diapers 3 -5 times daily. He was also in constant abdominal discomfort and pain often screaming and crying out, and his belly appeared distended. We were unable to Hunter down and were forced to hold to ease his discomfort. He was also not sleeping well at night. Finally after 4 days of seeing him in pain, I decided to lower the feed rate and place him on Pedialyte. According to his night nurse he slept soundly. The next day I increased his feeds slowly and mixed formula and pedialyte together. Once it reached above 55cc/hr (according to CNMC GI personnel, he was suppose to receive a feed rate of 70cc an hour rate) his discomfort returned. On the evening of February 10th we received a return call from Ginny Gebus (I had called her a day before out of concern of Hunter’s problems), Hunter’s nutritionist, and she then told us to take him to the ER and have the GJ tube placement checked. Again we took him to AAMC who took abdominal X-rays, but could not determine if there was a problem with the placement of the GJ tube and suggested that he return to CNMC for a more accurate and complete examination. The next day in the midst of the 2010 blizzare he was transported back to CNMC.
The CNMC GI surgeons determined that the GJ tubes were correctly placed, but because of his difficulties decided to repair Hunter’s Nissen. However, early in this hospitilazation, Hunter began to experience constant low grade fevers. Finally, on February 22nd Hunter underwent his Nissen repair surgery. The surgery went well without any issues. Suddenly, the next day in the evening around after 5pm, Hunter suddenly began having difficulty keeping his 02 stats above 90%. After repeated attempts to place the pulseox sensor in several locations, it was determined there was no sensor problem and that he was having troubles breathing on his own and with the nasal cannula, so he was transferred back to the PICU, and placed on the High Flow nasal cannula. After the surgery, he again contracted pneumonia once again which, according to the doctors may have developed as a consequence of the surgery. He remained in the PICU for about a week then was returned to the CNMC 7th floor, where he had gradual improvement. He was sent home March 9th.
Hunter thrived a bit easier at home with sleeping on and off and being around family. On the morning of March 15th, Hunter seemed a bit stressed and was having trouble with oxygen saturation, falling into low 90s – upper 80s. After several breathing treatments (see medication list for Nebulizer meds) Hunter managed to remain above 90% and was comfortable enough that he took his nap by 12pm. At 10am the same day, he was given his usual scheduled medications. At 1250, he was given his 12pm medications late. A few minutes after 1pm Hunter’s pulseox machine was beeping and his oxygen level dropped into the mid-70s, and we were unable to rouse him no matter what we tried and he was beginning to look pale. We tried everything to wake him but still did not get a response. Grandfather placed a call to 911 while I continued to try to wake Hunter. I placed the suction tubing his mouth resulting in a 3 second response. He was taken to Baltimore/Washington Medical Center in Glen Burnie for assessment. He continued to have breathing difficulties, but he was mostly awake and better than before, he was on oxygen through a face mask and he was evacuated back to CNMC. Once again, he was placed on the high flow nasal cannula. He was again diagnosed with pneumonia. Once again Hunter began to thrive and get well. We met with the CNMC GI team and Pulmonary to discuss the current issues. He was still having constant loose stools and had been since December. The GI doctors ran tests, including a saliva gram test. It showed that Hunter was having troubles with his saliva and, although the test wasn’t entirely conclusive, it showed he was again having small amounts of reflux once more; however, he was not throwing up. We learned that his Nissen is possibly is failing. He continued to do well despite the minor refluxing and continued to show no signs of vomiting. We were later asked to discuss the possibility of him going to Hospital for Sick Children, but decided against it at that time. I wanted to get him home and try to get him well by also keeping him on better anti-reflux medication and trying out a the new formula, Elecare, which had been prescribed by GI. Before discharge he seemed to do well on the new formula and medication and was also thriving well for a week or more on room air. He was discharged once again on April 1st.
At home, throughout the evening and the next day Hunter was doing well except for the sudden behavior of increased stiffening and arching more than normal and excessive oral secretions, believed to be saliva only.
On the night of April 2nd Hunter became extremely distressed and having his oxygen saturation dropped into the low 90s. Overnight Hunter continued to have difficulties which continued into the morning of April 3rd. Hunter once again was having difficulties with his oxygen saturation dropping into the mid-80s. At first thinking the pulse ox sensor wasn’t working well, I placed a phone call into the company that supplies the machine, but later determined that it was not the machine and once again Hunter needed help since his saturation dropped to a low of 50, so again, 911 was called. Hunter was not entirely as unresponsive as he was back on March 15 and he was coughing a bit, but still wouldn’t wake up entirely. Upon arrival at B/W hospital, again Hunter was in complete distress and was struggling to breathe. Doctors intubated him and called for transportation back to CNMC. Hunter was once again diagnosed with aspirate pneumonia. He was removed from the ventilator around April 8th and placed back on the GJ tube, after having several episodes of spitting up a lot of secretions. He tolerated feeds through the G-tube of the GJ tube but again was spitting up and often the smell of formula and medication was found so they switched his feeds entirely to be given through his J-tube which he was tolerating quite well. Hunter’s feeds were started out slow, however once the feed rate reached above 60cc Hunter showed signs of discomfort, the same signs he endured at home back in February. I asked the Doctor to lower his rate back down to mid 50s and Hunter showed no signs of distress. Hunter began to thrive well off of the oxygen and managed to be on room air for about a good two days. Also a week before May, Hunter started to develop a lot of low-grade fevers. Doctors ran tests from blood to stool samples and all results were coming back negative. Occasionally he had an autonomic storm which never lasted long at all. Finally after 24 hours without a fever, although low grade in the low 38sC Doctors felt he was well enough to go to HSC, a decision that was made because needed a lot of therapy to recover from his ordeals and continued to be monitor with his feeds and oxygen needs.
The first night at HSC, Hunter was restless and could not sleep but showed no signs of agitation; however he seemed to show signs of breathing difficulties and was placed on oxygen at 1liter. The next day Hunter slept off and on, occasionally getting upset. Overnight he developed a fever and experience possible storming episode.
Sunday, May 9th in the morning the fevers and breathing difficulties continued and HSC transported Hunter to CNMC. After he was transported to CNMC PICU, I was notified that Hunter was coding – blood pressure dropping and he went into cardiac arrest. This occurred twice while they were getting him situated in the PICU. He was ventilated on the high frequency ventilator and EKGs were run twice a day for four days. Due to his cardiac arrest and continued concern over possible heart damage, he was placed on a 24 hr Holter EKG monitor, which showed some cardiac weakness and some erratic enervation of the heart due to the events that occurred, however, there is still no word on the cause. Hunter was placed on a regular ventilator on May 12. Neurology and Immunology had stated they will run tests to determine what is causing Hunter’s constant hospitalizations. On May 15, Hunter’s breathing tube came out and he was placed on a high flow nasal cannula. After an attempt to stop Dopamine, Hunter’s blood pressure dropped and he was continued on the Dopamine. During the night of 15/16 May, Hunter experienced another Autonomic Storm and had to be given Ativan to control it.
During his stay in the PICU Hunter was weaned from the high flow cannula and was placed on a regular cannula receiving 3 liters of oxygen. He was stable enough to return to the Resp. Care Unit at Children’s but on May 22nd Hunter took another turn for the worst. His oxygen saturations dropped to the 70’s. His blood pressure also dropped extremely low. The attending had stated that Hunter needed to be re-ventilated. So he was placed back on the breathing tube. His blood pressure was still having difficulties and he was maxed out on 2 of the medications given for blood pressure so they also continued to give Saline boluses to help stabilize it. Finally several hours later he was stable and blood pressure was doing better.
Discussions were also made about placing in a Trach to help him stay comfortable for his breathing. He had the Trach placed on June 1st, 2010. Hunter spent time recovering from his surgery without any major issues; however was tested positive for MRSA. Doctors continued to monitor him and were deciding Hunter should either be prepared for home or Hospital for Sick Children. The decision for Hunter’s return for home was a difficult one to decline due to the numerous health issues and due to the cardiac issues faced from Hospital from Sick Children we were left with an option of where to place Hunter to receive the therapy and continuing managements of his medications and figure out what his sickness is and what caused him to be so sick the following months.
After asking for a second opinion Hunter was sent to Kennedy Krieger Pediatric Rehabilitation Unit at Kennedy Krieger in Baltimore. Hunter was transferred on June 23rd, 2010. Upon arrival many specialists and his former Doctors assessed Hunter’s issues and raised the question if Hunter truly had Dysautonomia. Several Doctors also questioned the amount of medications Hunter was currently taking and decided one of the first steps was to remove unnecessary medications that were not helping Hunter. Hunter was also evaluated for Therapy services of Physical and Occupational therapy to help strengthen Hunter’s weakened body state after being bedridden for the numerous months. Throughout his stay at Kennedy Krieger Hunter showed vast improvement compared to his time at Children’s medical center. Although tired easily he showed no signs of his previous medical issues of autonomic storming. Some of his medications have been discontinued such as Bromocriptine, Propranolol, and Glycopyrrolate. Doctors will continue to wean Methadone, Ativan, and Clonidine.
A recently sleep study was performed showing that Hunter had moments of destaturation and will be required to remain on the ventilator throughout the day until a repeat study will be performed.
Hunter is officially well enough to return home and discharged Tuesday August 24, 2010. He will continue to be followed up with Kennedy Krieger and John Hopkins Doctors. He will be receiving In-home therapy as well as homeschooling since he is not well enough to return to school.
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