Today we made great progress. Brandon is now off the Bipap breathing machine after 7 days. He is on oxygen and his lungs still have a long way to go, but he does not need a machine to help him breath at this point. We also stopped the aggressive respiratory treatments that Brandon hated. He is still getting respiratory treatments every 3 hours. I am hoping that they will move us to intermediate care Monday or Tuesday if he continues to improve.
The doctors have been unable to determine the exact cause of why we are here in the first place. On Thursday night when I brought him to the ER he tested negative to the flu, step and pneumonia. On Saturday night when we returned he tested positive to Type A flu which is associated with the H1N1 strain. However, a definitive test for H1N1 is done by the CDC and those results can take at least 1 month to return. Because Brandon has two tests with different results, when he came here to the ICU they did another more defined flu test and that test came back negative. I have found out that it is actually very hard to diagnose the flu because the swab has to go fairly far back in the nose to get a good sample. So the doctors in the ICU unit did another test which requires cultures to grow bacteria. These tests also take a long time and Brandon could be gone before the final results will come back. But so far there are no results from this test as well. Colleen Horton reminded me today when she came by that this is not the first time I have been searching for a diagnosis for Brandon. Two years ago when we started going to Scottish Rite the doctors there questioned why Brandon had two caverous feet. They were convinced that Brandon had an underlying condition that was not diagnosed. We have run many many tests since then trying to find a diagnosis. They also reviewed all the previous tests performed on Brandon the last 16 years and are not convinced that Brandon's diagnosis of cerebral palsy is accurate. Needless so say that conversation was a little shocking for me.
Really a diagnosis is not that important as long as Brandon gets well. It is always nice to know why so you can avoid whatever caused the problem in the first place, but medicine is not always that precise. I will continue to search for a diagnosis for Brandon's caverous foot condition because the symptoms are progressive, unlike cerebral palsy which is static.
I would like to know what caused this hospitalization and try to protect Brandon in the future. But no one really knows when a virus or a flu or any other condition will have this kind of affect. You just have to be as careful as possible to avoid an illness. Right now I just want him to get well so we can go home. More tomorrow. Leah
Sunday, September 13, 2009
Saturday, September 12, 2009
Better Day
Today was a turnaround day. Finally Brandon's right lung has some air movement. We are on day 7 in the hospital and day 6 in ICU. I was starting to worry about the right lung, because we have not seen improvement. But today finally we are hearing air movement. That means that the right lung is recovering. We still need to clear both lungs. This is a big improvement.
Also today, Brandon felt well enough to cough, which is important to help clear the lungs as well. He continues to receive intrapulmonary percussive ventilation. Which helps clear the lungs. However, Brandon hates the treamtent and is really fighting it. It is really hard to watch because Brandon very rarely has such a harse reaction to anything. Tonight we will decide if he will continue this treatment. More good news, Brandon has been off the Bipap breathing machine for 1 hour increments and was able to mainting his saturation rates in the lungs three times today. If this continues, that means we are close to getting off the Bipap machine. They are taking this step very slowly because if we take him off the Bipap too soon he can regress very quickly and we would start all over.
Brandon was also up playing Old Maid with me this afternoon. They let him sit up for 1 hour. He was really tired after he sat up but did a great job during the hour. Oh by the way - he won.
Laura Warren came to see us tonight. She is the first person to pass the isolation barrier of room 45 (with the exception of Brandon's school nurse and Lee Ann another nurse). Both my brother and I are already exposed so we do not have to take the protections. But everyone else coming into the room must wear a mask, a gown and sterile gloves if approaching Brandon. Before Laura came in, they made her suit up. I did ask the doctors today how much longer we would need this protection. I didn't really get a clear answer, but I keep hearing he will be safe after the normal virus/flu period which is normally 10 days. We are approaching 10 days. I think they will also want him termperature free and we are close to this as well.
So big success today, but alot of hard work for Brandon. He starting to complain about being in the hospital and asking when we can go home. The latest response is a countdown of minutes everytime he coughs. We were up to 54 coughs this evening. That is 54 more coughs than any other day. More tomorrow.
Leah
Also today, Brandon felt well enough to cough, which is important to help clear the lungs as well. He continues to receive intrapulmonary percussive ventilation. Which helps clear the lungs. However, Brandon hates the treamtent and is really fighting it. It is really hard to watch because Brandon very rarely has such a harse reaction to anything. Tonight we will decide if he will continue this treatment. More good news, Brandon has been off the Bipap breathing machine for 1 hour increments and was able to mainting his saturation rates in the lungs three times today. If this continues, that means we are close to getting off the Bipap machine. They are taking this step very slowly because if we take him off the Bipap too soon he can regress very quickly and we would start all over.
Brandon was also up playing Old Maid with me this afternoon. They let him sit up for 1 hour. He was really tired after he sat up but did a great job during the hour. Oh by the way - he won.
Laura Warren came to see us tonight. She is the first person to pass the isolation barrier of room 45 (with the exception of Brandon's school nurse and Lee Ann another nurse). Both my brother and I are already exposed so we do not have to take the protections. But everyone else coming into the room must wear a mask, a gown and sterile gloves if approaching Brandon. Before Laura came in, they made her suit up. I did ask the doctors today how much longer we would need this protection. I didn't really get a clear answer, but I keep hearing he will be safe after the normal virus/flu period which is normally 10 days. We are approaching 10 days. I think they will also want him termperature free and we are close to this as well.
So big success today, but alot of hard work for Brandon. He starting to complain about being in the hospital and asking when we can go home. The latest response is a countdown of minutes everytime he coughs. We were up to 54 coughs this evening. That is 54 more coughs than any other day. More tomorrow.
Leah
Friday, September 11, 2009
Another long day
Some of you have asked about the ICU unit here at Dell Children's Hospital. I wanted to share with you how the unit operates and housed. The old children's hospital (Brackenridge) here in Austin was not family friendly when your child needed to be in the ICU. I think Brandon has been there twice when he was very young. There was a chair in the room but no place to sleep. Families had to spend time in the waiting area and it was not private. Groups of families would grieve while other families waited, while others shared their joy. It was very hard. You would find family members sleeping in the waiting area. Some rooms were shared and were very small. It was not a place where you would even consider staying for a week.
Dell's new ICU unit has private rooms with the nursing station right outside the room and a window looking in on the patient. All beepers are also active in the nurses station. Each room has its own bathroom, sleeping for two (besides Brandon), free internet (thank you Michael Dell), and a rocking chair. There are team meetings twice a day with the team working on the care of Brandon. I can sit in on the meetings. They go over the latest data and set a plan for the day. Brandon has a respiratory therapist working with him all day. There are interns assigned to Brandon and they work with the specialists. Brandon's specialist is the Infectious Disease Physician. Really, Brandon has excellent care, just slow recovery. So with the exception of the beeping and people coming in all night, I get a pretty good night's sleep. Physicians start coming in around 8 am.
Today was another day of really agressively trying to get Brandon's lungs cleared. The right lung is still not moving air, but the left lung continues to improve. Brandon sat up for the first time today in a chair. He still continues to have a low grade fever at night. The goal now is to continue trying to get Brandon up, try trial periods without the Bipap machine and continue with respiratory therapy.
I am much more rested today after my long hot bath and a good night's sleep. Thank you to everyone who has signed up to bring food to the hospital. I really appreciate it. It is also good to visit with each of you.
More tomorrow.
Leah
Dell's new ICU unit has private rooms with the nursing station right outside the room and a window looking in on the patient. All beepers are also active in the nurses station. Each room has its own bathroom, sleeping for two (besides Brandon), free internet (thank you Michael Dell), and a rocking chair. There are team meetings twice a day with the team working on the care of Brandon. I can sit in on the meetings. They go over the latest data and set a plan for the day. Brandon has a respiratory therapist working with him all day. There are interns assigned to Brandon and they work with the specialists. Brandon's specialist is the Infectious Disease Physician. Really, Brandon has excellent care, just slow recovery. So with the exception of the beeping and people coming in all night, I get a pretty good night's sleep. Physicians start coming in around 8 am.
Today was another day of really agressively trying to get Brandon's lungs cleared. The right lung is still not moving air, but the left lung continues to improve. Brandon sat up for the first time today in a chair. He still continues to have a low grade fever at night. The goal now is to continue trying to get Brandon up, try trial periods without the Bipap machine and continue with respiratory therapy.
I am much more rested today after my long hot bath and a good night's sleep. Thank you to everyone who has signed up to bring food to the hospital. I really appreciate it. It is also good to visit with each of you.
More tomorrow.
Leah
Thursday, September 10, 2009
New Update
Well today was a little bit of a mommy day. I had to go to work for a few meetings. I would not have gone into work if Brandon's condition was worse. My rock star brother Jim volunteered to give me a break and took off thursday and friday. Thanks Jim. Not an easy job. But Jim has already been exposed to Brandon so it was a logical choice.
I worked until 3:30, went back to the hospital to check on Brandon's condition and I am just now home. I am writing this early because I am also exhausted and need a good night's sleep, a hot bath without interuptions and a little down time.
Brandon's right lung has really filled up and they wanted to agressively try to get air movement in the lung today. They started new agreesive treatments that basically put pressure inside the lungs to try and shake them clear. By the time I left we could hear a little air movement. I will take that. Brandon continues to not be able to breath independently. So one more day in ICU. Tomorrow we will try and get him up in hopes he will try to clear his lungs independently. They will probably also try brief periods of lowering the oxygen on the BiPap and see how he tolerates the change. Tomorrow will be 5 days in ICU.
I wanted to share a story from Brandon's aide at school that made my day and a little crying, but it is so Brandon. She said "We were working on a poem together in English. He (Brandon) was asked to describe himself in two words. He chose LOVING and KIND. He is such a wise 16 year old soul!" Pat I told Brandon about your e-mail and it made him smile. But it is so true.
Thank you all for your kind words and reminding me why Brandon is so special to me and to everyone who knows him.
I am going to bed and will have an update tomorrow.
Leah
I worked until 3:30, went back to the hospital to check on Brandon's condition and I am just now home. I am writing this early because I am also exhausted and need a good night's sleep, a hot bath without interuptions and a little down time.
Brandon's right lung has really filled up and they wanted to agressively try to get air movement in the lung today. They started new agreesive treatments that basically put pressure inside the lungs to try and shake them clear. By the time I left we could hear a little air movement. I will take that. Brandon continues to not be able to breath independently. So one more day in ICU. Tomorrow we will try and get him up in hopes he will try to clear his lungs independently. They will probably also try brief periods of lowering the oxygen on the BiPap and see how he tolerates the change. Tomorrow will be 5 days in ICU.
I wanted to share a story from Brandon's aide at school that made my day and a little crying, but it is so Brandon. She said "We were working on a poem together in English. He (Brandon) was asked to describe himself in two words. He chose LOVING and KIND. He is such a wise 16 year old soul!" Pat I told Brandon about your e-mail and it made him smile. But it is so true.
Thank you all for your kind words and reminding me why Brandon is so special to me and to everyone who knows him.
I am going to bed and will have an update tomorrow.
Leah
Wednesday, September 9, 2009
A Little Better
Today has been a really busy day here at Dell Children's Hospital ICU room 45. We started out really well. Brandon was awake, watching Disney and laughing for at least 50% of the day. His color looks much better. His lungs are still full in the lower lobes, but better in the upper. One side is better than the other. The goal is to take him off the breathing machine and transition him to oxygen. We tried to lower his oxygen rate on the BiPap, but slowly Brandon's saturation rates went down during the day. Therefore, we had to up the level of oxygen he is getting on the BiPap machine. We will try again tomorrow to lower the oxygen rate on the BiPap and transition to oxygen through a mask. We are sill in ICU and will be here as long as he is on the Bipap. Brandon's temperature was good today, but again tonight it is up. Right now at 102.
The Infectious Disease doctor came by today and said that she is estimating based on today that Brandon will be here between 10 to 14 more days and that once released he will be extremely weak and unable to go to school for at least two weeks after release. The goal she discussed was getting the fever under control and trying to clear the lungs. Right now there is very thick mucous and fluid on the lungs that need to be cleared. She said recovery wil be slow.
Brandon also had two IV's go out today. One of them leaked 90 cc's of fluid into his hand. The hand was very swollen and is now draining. It will take days to clear, but it is much better than this morning.
The good news for the day is that everyone is now talking recovery. That is much better than the alternative, even if it is a long slow process. The best news is that Brandon was really happy today 9/9/09 and ready for all the new Beatles CDs and Beatles rock band. He laughed throughout the day and interacted with everyone. Little baby steps getting better is great with me. More tomorrow.
Leah
The Infectious Disease doctor came by today and said that she is estimating based on today that Brandon will be here between 10 to 14 more days and that once released he will be extremely weak and unable to go to school for at least two weeks after release. The goal she discussed was getting the fever under control and trying to clear the lungs. Right now there is very thick mucous and fluid on the lungs that need to be cleared. She said recovery wil be slow.
Brandon also had two IV's go out today. One of them leaked 90 cc's of fluid into his hand. The hand was very swollen and is now draining. It will take days to clear, but it is much better than this morning.
The good news for the day is that everyone is now talking recovery. That is much better than the alternative, even if it is a long slow process. The best news is that Brandon was really happy today 9/9/09 and ready for all the new Beatles CDs and Beatles rock band. He laughed throughout the day and interacted with everyone. Little baby steps getting better is great with me. More tomorrow.
Leah
Tuesday, September 8, 2009
One more day
Well today has been more in a holding pattern for Brandon. The doctors came in last night and said that we are going to take it one day at a time from here. It is all about waiting for the next tests, the next doctor, the next therapist, the next nurse. Now thinking back on it, it has been 16 years of waiting on walking, talking, schooling, surgeries, feeding, many more little things that we all take for granted everyday. Brandon always reminds me of what is important and to not take those things we do so easily for granted. So here we are one more time, but this time I am more worried than I have been in a long time that this is very serious and for 16 years I have been blessed. I also have to remember that the most important thing I want for Brandon is that he is happy.
So tonight the day before 9/9/09 and the release of all the Bealtes materials Brandon did awaken a few minutes to hear that tomorrow is the big day and when we return home the Beatles rock band will be awaiting.
Brandon's brother Patrick came down today to be with him and that made him happy. Today Brandon did not get worse. His lungs are the same as yesterday, but not worse. His temperature was down today, but back up this evening. His blood count has risen slightly which is good. Brandon has sleep 95% of today except for the brief moments with Patrick, the Beatles and when the respiratory therapist arrived. Otherwise he is fairly comfortable.
More tomorrow. Thanks for all your calls, e-mails, meals, errands and prayers. More tomorrow.
Leah
So tonight the day before 9/9/09 and the release of all the Bealtes materials Brandon did awaken a few minutes to hear that tomorrow is the big day and when we return home the Beatles rock band will be awaiting.
Brandon's brother Patrick came down today to be with him and that made him happy. Today Brandon did not get worse. His lungs are the same as yesterday, but not worse. His temperature was down today, but back up this evening. His blood count has risen slightly which is good. Brandon has sleep 95% of today except for the brief moments with Patrick, the Beatles and when the respiratory therapist arrived. Otherwise he is fairly comfortable.
More tomorrow. Thanks for all your calls, e-mails, meals, errands and prayers. More tomorrow.
Leah
Monday, September 7, 2009
Brandon Update
I have not had time to do an update for everyone concerning Brandon. Thursday I came home from a trip out of town to find Brandon not feeing well. He had runny eyes, a cough and some chest congestion. After dinner he went straight to bed. I decided I needed to take his temperature around 7 PM and it was 101. I didnt think too much about it and gave him tylenol, extra fluids and put him to bed. That night there was a news report that a large number of kids with CP and seizure disorder were more affected by the H1N1 flu than others and that was in the back of my mind. At 10 PM I took his temperature again and it was 104.8. I called the afterhours clinic at ARC and they advised me to go ahead and take him to the ER to get checked out.
We went to the ER and they ran several tests including the flu, but all were negative. They told me he had a virus and to take him home home and treat him for the virus. I took Bandon home started him on tylenol and motrin and as many liquids as possible. Friday the fever stayed at 104 and he slowly got worse. Saturday I felt a little out of my league as Branon started to have problems breathing. I again called ARC as it got later in the evening. Brandon has a g-tube placed that he uses when he is sick. I noticed that a black substance was coming out the edges and told the nurse. We both did not think took much about it. However, at midnight the nurse fom ARC calld and said that the doctor was afraid that the black substance was blood and we needed to head to the ER. Brandon and I headed back to the ER at Dell Children's Hospital.
When we got here I found out that Brandon had pneumonia in both lungs and that he did have the flu. They sent the sample to the CDC to cofirm H1N1. However confirmation can take quite a while. Brandon's oxygen rates were very poor so they admitted him to the hospital. We were in a regular room Sunday morning, but Brandon started to struggle to breath and they found blood in his urine and blood coming out of the G-tube. They moved him to the intermediate care in the afternoon for closer monitoring. We stayed last night in intermediate care. It looked like Brandon was getting better but in the afternoon his breathing became more labored and his lungs collapsed. They quickly moved him to ICU where we are now.
They have Brandon connected to a CPAP machine to open the lungs and allow the lungs to heal. They also have him on several different antibotics trying to kill the infection. They have consulted wih an infectious disease physician here and are monitoring him closely. Right now we will just need to wait and hope Brandon can keep fighting this infection.
I want to thank all of you for your support, your prayers and encourgement during this time. I really appreciate your help. I have very limited access to e-mamil and phone, but I am getting all your messages.
I will try to keep this blog updated as we continue with this battle and hope you all keep your prayers up for Brandon at this time.
Thanks so much
Leah
We went to the ER and they ran several tests including the flu, but all were negative. They told me he had a virus and to take him home home and treat him for the virus. I took Bandon home started him on tylenol and motrin and as many liquids as possible. Friday the fever stayed at 104 and he slowly got worse. Saturday I felt a little out of my league as Branon started to have problems breathing. I again called ARC as it got later in the evening. Brandon has a g-tube placed that he uses when he is sick. I noticed that a black substance was coming out the edges and told the nurse. We both did not think took much about it. However, at midnight the nurse fom ARC calld and said that the doctor was afraid that the black substance was blood and we needed to head to the ER. Brandon and I headed back to the ER at Dell Children's Hospital.
When we got here I found out that Brandon had pneumonia in both lungs and that he did have the flu. They sent the sample to the CDC to cofirm H1N1. However confirmation can take quite a while. Brandon's oxygen rates were very poor so they admitted him to the hospital. We were in a regular room Sunday morning, but Brandon started to struggle to breath and they found blood in his urine and blood coming out of the G-tube. They moved him to the intermediate care in the afternoon for closer monitoring. We stayed last night in intermediate care. It looked like Brandon was getting better but in the afternoon his breathing became more labored and his lungs collapsed. They quickly moved him to ICU where we are now.
They have Brandon connected to a CPAP machine to open the lungs and allow the lungs to heal. They also have him on several different antibotics trying to kill the infection. They have consulted wih an infectious disease physician here and are monitoring him closely. Right now we will just need to wait and hope Brandon can keep fighting this infection.
I want to thank all of you for your support, your prayers and encourgement during this time. I really appreciate your help. I have very limited access to e-mamil and phone, but I am getting all your messages.
I will try to keep this blog updated as we continue with this battle and hope you all keep your prayers up for Brandon at this time.
Thanks so much
Leah
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