This will be the final post of Brendan's Fight for Life as today he is laid to rest. His pain and anguish are over and he is at peace. Brendan's legacy will continue through his family and friends and he will forever be adored.
In tears we saw you sinking,
And watched you pass away.
Our hearts were almost broken,
We wanted you to stay.
But when we saw you sleeping,
So peaceful, free from pain,
How could we wish you back with us,
To suffer that again. It broke our hearts to
lose you, But you did not go alone,
For part of us went with you,
The day God took you home.
Brendan left Fort Worth in full EMS escort on his Journey back home to Iowa Park, Texas where he will be laid to rest. Funeral Arrangements are being made for Thursday of this week.
Today Brendan's Family received the devistating news that Brendan no longer has any brain function. This means that Brendan will no longer be able to sustain life. A decision was made to terminate life support and Brendan died early this evening. Life will never be the same for anyone touched by Brendan.
Brendan has taken a turn for the worse. Please begin to pray for Brendan and his family to help him fight for survival. Each minute is critical right now and Brendan's fate is uncertain. Last night, Brendan began having continuous seizures and they were unable to stop them for 12 hours despite him being on several anti-seizure medications and paralytics. Brendan has also had a stroke. Neurological deficits are unknown at this time. They can’t do an MRI to look at his brain at this time because they say that they would have to stop some of his treatment in order to do so and that is not an option at this time. Currently, they have him on the medication pentobarbital which is a very potent central nervous system depressant which intentionally has put him in a barbiturate coma. This is what finally controlled his seizures. At this very moment, Brendan is receiving dialysis. Brendan is in metabolic and diabetic ketoacidosis. He has a very high level of ammonia and acid in his blood and his liver is very sick. Doctors say that dialysis is the last ditch effort that Brendan has to get rid of some of his toxicity. If the ammonia levels aren’t controlled, Brendan’s brain will swell and it will be lethal. They have Brendan on an EEG machine to monitor his brain activity and are watching for any seizures as they try to take him off of the pentobarbital. His body temperature is a little too cool so they have a device called the “Bair Hugger” around him to warm him slowly. Blood Pressure is holding well. Brendan’s lungs are still sick because he still has pneumonia. Brendan’s care is so critical that there is a nurse in his room (and sometimes more) 24/7 doing “something” for him each minute. Doctors said today “we are worried”.
Brendan's white blood count is 200 today which has increased slightly, a much better result than the recent past. We are hoping it will stay 200 or even perhaps increase. Brendan is Alkalotic today. Basically this means his body has a low concentration of hydrogen ions causing his body's pH level to be higher than normal. Losses of hydrogen ions occurs when an excess of aldosterone hormones induce the retention of sodium in the body, therefore raising pH of the blood. This is why his kidneys are having some problems. They are watching this closely and Doctors say for now there is no need for dialysis but they are going to do a sonogram on his kidneys tomorrow (Friday) to make sure they aren't worse than suspected. Doctors are optimistic! His billirubin and ammonia counts are high today. The results of his Bronchial scope are in and the test showed no significant infection in his lungs other than the pneumonia. No fever today! They are going to go down a little on his ventilator rate to see how he does. Brendan's Blood Pressure dropped today so they are giving him a medication called Nicardipine to maintain it. The Doctors told Brendan's Mom that they are going to consult Nephrology to help treat his kidney problems related to his HLH. A Nephrologist is a physician who has been trained in the diagnosis and management of kidney disease, by regulating blood pressure, regulating electrolytes, balancing fluids in the body, administering dialysis and several other kidney treatments including immunodeficiency conditions. They are giving Brendan Ativan every 2 hours to help him rest and decrease his anxiety.
Vital Signs as of 11:40 this morning...Blood Pressure 121/58, Heart Rate 104, Respirations-he is still on the ventilator but breathing some on his own, SPO2 96%, Arterial Temperature 36.4 C (97.5 F)
Brendan has rested today and is trying to let his body heal. Each moment is stressful for Brendan's Family as they await any change for the better. His billirubin count is 17. Today marks 3 days with no fever - this is good news. They gave him a small amount of platelets today to maintain his count. His urine color was a more normal straw color today. This is comforting. Brendan's lymph nodes are down significantly today. The results are in from his Echocardiogram...there isn't a significant amount of fluid around Brendan's heart and the S3 gallop sound heard by Doctors is now gone. The results from the Bronchial Scope of his lungs show that there is no growth of bacteria so far. They are going to give him a medication called Lasix today to help pull off some of the excess fluid from his body.
Vital Signs as of 14:45 today...Blood Pressure 130/72, Heart Rate 90, Respirations- ventilator assisted, SPO2 97%, Arterial Temperature 36.0 C (97.0 F)
Today Brendan received a hair cut. Although he isn't happy about it mom is sure, its much better for him because his hair was falling out in clumps and was all over him and his bed. Bless his heart. Brendan is starting to have some renal problems (with his kidneys) but the Doctors say that his kidneys are still functioning well right now and they are on top of it. The Doctors did say that if his kidneys are affected by one of the medicines they are giving him, they may have put Brendan on dialysis for a little while during his treatment. His white blood count was 100 and his platelets were 96 today. They did a sonogram of his stomach today to look for fluid and blood. The results are still pending.
Because of Brendan needing a Bone Marrow Transplant, the family is asking that if you would like to be a Bone Marrow donor for Brendan, please go to your local Red Cross to be tested as a possible donor match. You just need to give Brendan's Name and Birthday (12-3-1992). The Wichita Falls Red Cross isn't participating in Bone Marrow Testing at this time. Please check for the nearest location to you.
Big meeting with all of the Doctors this morning. They didn't seem to hold anything back today. They gave Brendan a 50% chance of being able to fight this. They also said that Brendan will need a bone marrow transplant. This news was devastating and overwhelming. We all know that Doctor's are going to give "worse case" so we are going to stick with 100% chance of Brendan fighting this. We know Brendan is tough and how hard he will work to fight it. They did a bronchial scope on him today so that they could take a better look at his mouth, throat, his airway and his lungs. They also took a culture of his lungs while they were in there. The results are still pending. Brendan's sister Bethany made a trip to Fort Worth today for testing of her being a possible donor match for his bone marrow transplant. Doctors say there is about a 25% chance she will be a match. If she isn't, Brendan will be listed on the National Registry for Bone Marrow Transplant.
Brendan got much needed rest last night as his body is really tired and he is really having to fight this thing hard. Today has been another tough day. Brendan still has exclusively 2 nurses caring for him around the clock due to his delicate condition. They performed an Echocardiogram on Brendan's heart today because the Doctors heard a gallop sound and wanted to be sure that his heart doesn't have too much fluid around it. The results are still pending. He received blood, plasma and platelets today. The creatinine level in his kidneys are a little high still. They decided to put Brendan's NG (nasal gastric) tube (feeding tube) back in today so that they could provide him with nutrition. Through this process, they found that Brendan's lungs had bright red blood in them and his stomach had dark reddish-black blood. This isn't a good thing and they don't know why he is bleeding inside.
Vital signs at 23:27 tonight: Blood Pressure 143/78, Heart Rate 80-98 fluctuating, SPO2 98-100%, Arterial Temperature 36.7 C (98.0 F).
Strong prayers are needed so that the Doctors can figure all of this out. Goodnight Brendan, we are all fighting for you and need for you to be strong too! We love you!
Brendan rested good last night but today he took a turn for the worse. Brendan is in Critical condition again. Brendan began struggling to breathe so they had to put him back to sleep and re-intubate him (put him on the ventilator) late tonight. This was a disappointment to us all and the Doctors were hoping this wouldn't happen. Brendan is still coughing up blood. Vital Signs were good with the exception of his respiratory rate being 50 prior to intubating him. Now, he can finally rest because he isn't working hard to breath anymore. Now, due to his critical care needed, there are 2 nurses assigned to only Brendan around the clock. Brendan's Mom and Step dad are with Brendan and it is a very emotional day.
Today, Brendan comprehended better and was communicating but was still a little confused and disoriented at times. Since they found White Blood Cells in his Spinal Fluid yesterday during the spinal tap, today they injected Chemo directly into his spinal fluid hoping to fight this in a better way, right into one of the sources. He also received his regular dose of Chemo in addition to the Spinal Chemo. The E.N.T (Ear, Nose and Throat) Doctor examined Brendan today in an effort to find the source of Brendan’s coughing up blood. The Doctor inserted a special scope (camera) into his throat to get a closer look. The results show that the blood may be coming from the back of his nasal cavity. The Doctor saw blood, blood clots and raw tissue inflamed in that area. They have a plan to treat it now that they know where it’s coming from. Brendan's Platelet count is 42 and his White Blood Cell Count is 50. Medication changes: They are pulling Brendan off of the Dilaudid and adding back on the Fentanyl drip for pain and anxiety with Neurontin on top of it to help with his nerve pain. Mom and Doctors feel that this is a better choice due to his mentation and other side effects associated with the Dilotid. Obviously, these decisions can change day to day but this is what is thought to be best for Brendan today! There are discussions of adding another class of antibiotics, Cephalosporin, to the mix on Monday but decision is not final.
Bless his heart...Brendan is losing his hair now. As some of you know, Brendan wears his hair a little longer than some. Because his hair is coming out in clumps and is all over the bed and all over him, he really does need a haircut. Well, one of the Doctors spoke to Brendan directly today about a few things and during this conversation, Brendan had a humorous moment. He may not remember that conversation later on and since he made his mom laugh today, we felt it was special and wanted to share it with you...I can imagine her beautiful long lost smile. -------- The doctor explained to Brendan that it is time that he has a haircut, Brendan said NO. The doctor proceeded to explain further and Brendan said NO, I DON'T DO THAT STUFF. The doctor said, YOU DON'T DO HAIRCUTS? Then Brendan said NO, I DON'T SMOKE POT. LOL! The result and perhaps a side effect of several medications all working to fight this!
Vitals at one point today: Blood Pressure 148/72, Heart Rate 134, SPO2 97% on High Flow Nasal Cannula at 60 Liters Per Minute (Yep, 60, not a typo for you medical people...you may have to look it up), Respirations Unknown, Arterial Temperature 39.1 C (102 F)
This morning Brendan was coughing up blood and Doctors aren't sure where it is coming from but they are on top of it. They did a chest x-ray to check his lungs for blood and it was negative so the blood isn't coming from his lungs. He received 2 units of blood again today as well as several units of Platelets. They did a Bone Marrow Biopsy early this afternoon and the results aren't what we wanted to hear. Brendan's body isn't making cells in the Bone Marrow. There were discussions today of a Bone Marrow Transplant in the near future but nothing is certain. Throughout the last couple of days, Brendan was given Versed again as needed to help sedate him at times so that his body could rest. He is not being sedated continuously. In addition to the Ativan, Dilaudid was given to help with pain and anxiety. He is doing good breathing on his own but he is so tired from fighting the multiple infections. His skin is still Jaundice (yellow) today but we are unsure what his billirubin count is. It has been a long and exhausting day for Brendan and his family. Watching Brendan have to go through this is so heartbreaking...our faith is not lost though, we are staying strong! Prayer Groups...he is listening! Goodnight Brendan we pray that your body will rest and heal throughout the night while you sleep. We love you!
Brendan had a little easier night last night. They continued the Ativan to help with anxiety, restlessness and to help him sleep. He seemed like he comprehended better today. There are discussions of doing another Bone Marrow Biopsy to see if his body is still making cells. It is not certain when they are going to do it. His WBC today was 100. As of 1:35pm his Vital Signs were Blood Pressure 134/70, Heart Rate 117, Respirations 21 breaths per minute, SPO2 97% on 60LPM High Flow Nasal Cannula and Arterial Temperature 38.6 C (101.5 F).
Another rough night last night. Ever since they removed Brendan's breathing tube on Monday (yesterday), Brendan has been very anxious and very loopy. None of his words make since and Doctors are telling us that it's possibly due to the heavy amounts of medication they have had him on. Finally, in the late morning hours they gave Brendan some Ativan to help him rest and sleep. Brendan is still working to breathe on his own and retracting a little but he still has the Bacterial Pneumonia. Doctors say that his lung x-rays look a little worse today. They have put him on a High Flow Nasal Cannula to help use positive pressure to open his lungs up (the alveoli in the lungs). This helps him not work as hard to breath and they are trying this in an effort to not have to put him on the ventilator again. He has MRSA in his lungs and this is suspected to be the cause of it being even harder to fight the pneumonia. There are results still pending from a spinal tap they did last week. If the results find that WBC are in his spinal fluid they may put Chemo directly into his spinal fluid on Friday of this week. Brendan is still on 5 different antibiotics to help fight all of these infections. Vancomycin and Gentamicin to name a couple. These are broad spectrum antibiotics so they fight several things at once. Usually even the infections that we don't know he has. They are giving him Platelets q 6 hrs (every 6 hours). He is still Jaundice today since the billirubin level in his liver is still high but it's down from yesterday.
At the request of some of you, here are Brendans Vital Signs at one point in the day. Blood Pressure 116/45, Heart Rate 123, Respirations 26, SPO2 94%, Arterial Temperature 39.4 C (103 F)
Today Brendan is somewhere in between Critical and Stable. His fever got very high last night and into the morning. It was in the 105 degree range. They went ahead and gave him Ibuprofen because his platelets are good levels today. Tylenol is still not an option. Fever stablized for now. Blood Pressure is still an issue but it is holding. NG Tube (Nasal Gastic Tube) went in today. The breathing tube came out today! :-) Brendan was starting to cough and fight the tube as the sedation was pulled off and when he was asked if he wants the tube out, he shook his head yes. This new step will be monitored closely and we are anxious to see how he will do breathing on his own.
It's Valentines Day and Brendan had a very rough night last night and didn't sleep well at all. He struggled with his fever increasing today and also his Blood Pressure dropping. They aren't sure why his blood pressure dropped but think it could have something to do with his Sedation drugs. Throughout the morning Brendan and mom got a much needed nap in from such a long night. At one point today, Mom was overwhelmed by Brendan's High Fever because it kept coming up and they can't give him Tylenol because of his liver. Around the clock they are using ice packs and cold towels to try and cool him down. Rash appears better this morning. They are still allowing for him to breath against the ventilator and he is doing good with that. The last rate the machine was set on was 8 breaths per minute and Brendan was breathing at a good rate of 22. :-) Despite all of the issues at the present, they are still talking about removing his breathing tube tomorrow. This is a wonderful thing.
Brendan is still in the Pediatric ICU. Last night was a restless night for Brendan. He was more uncomfortable now that he is a little less sedated but as hard as it is for him, it is still part of the process unfortunately. Today, Brendan is still intubated and on the ventilator but the weaning process is still the plan. Brendan's Spinal Tap results from yesterday are not in yet. He received blood again today but did not receive chemo. Brendan continues to have a pretty bad wound on his bottom because of the breakdown and irritation from the diarrhea and chemo but they are treating it diligently. Brendan's fever is still hanging steady at around 101.0 F but hasn't increased to a dangerous level in several days. They continue to place ice packs on him and turn him regularly to prevent further bed sores. Brendan's mom is thrilled that he is able to respond to her by blinking his eyes and squeezing her hand. Brendan's Grandma and Grandpa visited him today. He responded to them as well. It's still cold outside and we had a little sunshine...finally! All of the snow is melting and as of this evening, there was only a small amount left here and there. Goodnight and let's pray for a peaceful night for Brendan!
Brendan remains in the Pediatric ICU. Today, Brendan reached a milestone, 2 actually. 1. This was the first day since he has been in ICU that the Doctors considered him STABLE. Although he is stable today, the Doctors have been careful to explain that things could get worse again before they get better but we will accept stable as just that! :-) Optimistic Advocacy is what we are calling it! 2. Brendan is less sedated today and able to slightly respond and follow commands. He will blink once for yes and twice for no. This has mom doing cartwheels down the hall. Mom asked Brendan a few questions today and she told him that it's going to be okay and not to try and talk. He is still much too sedated to write words on paper so the blinking is working fine for now. This is the first day since Brendan’s diagnosis that he has been even slightly alert. He knows something is wrong but he still doesn't know anything about his illness. Mom mentioned her worries about having to tell him. Brendan slept Thursday night peacefully so mom got some much needed rest too. Blood count is still low but he is receiving platelets. Ventilator PEEP was down to 8 today and the rate was increased to 12. WBC still at only 200 but hasn't dropped so that's good. Brendan is off of the Epi but is still on Dopamine at 5 mcg/kg/min. Blood Pressure holding steady. He is still on Versed for sedation, Fentanyl for pain and Zofran for nausea. CT and Echo were both clear today. They did a spinal tap this afternoon to check for white blood cells in his bone marrow. If WBC are present, they plan to shoot chemo directly in the bone marrow. His liver is still enlarged but levels are a little better! :-)
Mom looked joyful today. Her face was brighter and her faith was strong that things are getting better.
God-Mother Selena visited today with her son Justin, who is also 17. There was a mention or two of playing X-Box Live. Justin plans to show Brendan the ropes when he gets better as Brendan's dad has a new X-Box waiting on him when he gets out of the hospital. It was so nice to see Brendan's gorgeous blue eyes today. A much needed lift of spirits.
Goodnight Brendan...we love you!
Brendan's lungs and liver slightly improving. He is still on the ventilator and they are attempting to very slowly wean him off. Fighting the HLH and will for a while. He had 2nd round of chemo and tolerating it well. White blood cell count still down but hopin to get it back up. Brendan is still not able to respond at all. They have him very heavily sedated to help his body continue to rest and fight. Still a long scary road ahead but taking it hour by hour and day by day. It's snowing today. If fact, there are 12 inches of snow outside the hospital today. Lots of pictures were taken so we could show Brendan what he missed while he was sleeping!
From one minute to the next, Brendan's survival is uncertain. This is a horrific time for Brendan's family. Brendan's birth dad has come to Cook Children's to see Brendan. Brendan is still in critical condition and still in ICU fighting for his life. He is battling several infections including Bacterial Pneumonia, MRSA, C-Diff and his liver and spleen are still enlarged.
On top of everything, Truancy is a great concern for Brendan's school since he never returned to school after Christmas break. Brendan’s mom's phone is ringing off the wall wanting to know why Brendan isn't in school. They are just doing their job but emotions and fear have mom too consumed to worry about that right now.
Brendan is now in critical condition. He went into respiratory distress, was intubated and placed on a ventilator, then was moved to ICU. Brendan is physically exhausted and was fighting so hard to breath. He is fighting for his life now.
Mom said...Start praying hard please. Today, we will find out if Brendan will need a bone marrow transplant or not.
Mom said...I am scared. One day it seems like I see improvement and the next its like it gets worse. I'm really scared :(
Mom said...Bone marrow biopsy came back with no sign of lukemia :) but he still has Mono and has bacterial pneumonia:( Going for a sonogram to check the spleen. not for sure yet if they are goin to remove it. He still has no immune system. Keep praying please to get my son through this. Still not out of the woods yet with fever spiking to 105.
Brendan is very, very sick today and has gotten worse. Brendan's mom took him back to the ER where she advocated for Brendan to be transferred to Cook Children's Hospital in Fort Worth. The Doctors listened and he was transferred by Ambulance to Fort Worth. He has been admitted and they are running a lot of tests to try and find out why he isn't getting any better. Brendan still has bacterial pneumonia and a dangerous fever. Mom is so scared.
Brendan's God Mother Selena, remembers hearing Angel's voice on a message when she was calling from the ambulance. FEAR is a good word to summarize the message.
On top of it all, today is Don's Birthday and nobody is in the mood for celebrating. :-(
Mom said...We are blowing this pop stand!!!! Finally leavin hell and goin home :):):):)
Mom said...Well, not going to home from hospital today. Brendans fever is back up again!!!!!!!
Brendan was at home and could not swallow, he had a severe rash all over his body, he was running a high fever, and was vomiting. Brendans mom took him back to the ER. They treated him for dehydration, gave him more Roseffin, and more steroids. Brendan was admitted into the hospital in Wichita Falls for one week.
At 13:37, Mom said: Sitting in the ER waiting for them to admit my son to the hospital The mono has taken over! Please pray for him. He has Mono and instead of causing fatigue and the normal symptoms you have with it, the mono went out of control and his lymph nodes are the size of softballs on either side of his neck causing his tonsils to swell to the point they are touching together and won’t go down. His spleen has been affected by it he has a sinus infection; bronchial. Pneumonia on top of all of this. They say it’s rare but pneumonia can happen with Mono. He's on steroids pain meds, anti-viral meds and IV antibiotics he's so sick. To top it all off I'm sick and can’t really stay up there with him. His dad stays with him cause his immune system is really jacked up right now. He's running fever and his lymph nodes in his groin have been affected as well. I'm worried to death and hope all this treatment will soon kick in. He's been fighting this for 2 wks now and he's worn out.
Mom says both boys are getting better today and she is hoping they will stay that way.
Brendan is still at home fighting Mono. Now, little brother Reg is sick with Croup. Cough syrup, steroids and Tylenol on board. Mom says it is tough having two kids sick at the same time.
After being sick for a couple of days, Brendans neck became extremely swollen. Brendans mom took him to the Emergency Room where he tested negative for Strep throat and was positive for the Mono virus. The ER doctor instructed Brendan to stop taking the antibiotics because antibiotics only treat bacterial infections. This was discovered later to be an almost fatal decision. Brendan then went home where he was going to let the Mono run its course.
Brendan wasn’t feeling well so his mom took him to their Doctor. He was thought to have Strep Throat and was given an antibiotic, steroids and a shot of Roseffin. They also did a chest x-ray to check for pneumonia. Results were not known at that time. Brendan went home to rest.