I haven't updated the blog since we left the hospital and several of you have asked what is going on with Brandon. I haven't updated because it is hard for me to tell how he is doing. To me he is weak, not 100%, still has congestion, but watching TV, playing the Beatles rock band, not sitting up much, fairly happy and much better than in the hospital. The question is when can he go back to school and when should we start pushing him to get up and out. It is hard for me to tell because Brandon has been sick many times in his life and the rebound is always different. The doctors working with Brandon said that this was an extreme attack on Brandon's body and it will take time to recover. But just like you and I after surgery or an illness when do we go back to work. Plus the added guilt because I am a daughter and niece of lifetime teachers and it is implanted somewhere in my brain that kids have to go to school. I never missed school very often when I was growing up due to the nagging of my school teacher mom and that was passed on to me.
I had planned for next Monday. But yesterday I took Brandon back to the infectious disease doctor and she said Brandon sounded worse. She read the report of the latest chest x-ray and asked for us to have more tests done and immediately started him back on levaquin. This is an extremely strong antibiotic with many side effects but I know Brandon's pneumonia will be difficult to clear. I gave him a second dose today. After realizing that his pneumonia may not be better than when we left the hospital I decided to give him another week to decide what to do and get past my guilt. In the meantime I will go back next week to Scottish Rite to deal with his foot surgery issues.
We left Dell Children's with Brandon in a "boot" for Brandon's foot. It is too big and awkward for Brandon to walk on, so the foot issue will become bigger as Brandon wants to get up and walk. Also, I mentioned the g-tube in a previous post. Brandon has a long, old fashioned G-tube hanging about 5 inches down from his stomach. That was fine while he was so ill, but if he is up and moving the risk of his catching it on something and coming out are high. Plus, Brandon hates it. I was getting a replacement mic-key (the g-tube flat on the stomach) but his size is on national back order and there is not an end date on when it will come. So in the meantime we are talking with Brandon's GI doc to see if the size below or above will be okay. Brandon is complaining about the g-tube so I really want to get this done before he returns to school.
We are also dealing with the swallowing issues. I think Brandon is a little stronger and his swallowing is a little better but if his lungs are worse I have to be very careful on what he eats so there is no aspiration. Therefore, we are thickening his liquids and limiting his diet for now. Once Brandon is off the levaquin we can continue on the clinical trial medicine of Proposid which helps move fluids through his body and helps with the swallowing issues. Brandon has lost 10 pounds which he didnt need to lose and Brandon's doctor estimates he needs 2600 calories a day to gain weight. We are not there yet.
Again it is just a waiting game to get better but so much better being home to recover.
Leah
Thursday, September 24, 2009
Wednesday, September 16, 2009
Home at Last
We were finally discharged today from Dell Children's hospital after 12 very long days. I cant tell how great it feels to be home and trying to get back to our routine. Brandon is so happy. We did not get discharged until 4:00 PM today due to some medication issues, but finally the signed papers and we were out of there.
Brandon will need to recover at home for two more weeks. His lungs are still congested, especially on the right side. He is also very weak and lost 10 pounds. But we are both glad to get home.
Now we need to figure out how to play Beatles Rock Band. Any volunteers on coming over a giving a few pointers let me know.
Finally today the doctors told me that Brandon had the H1N1 flu and that he was very lucky it did not get worse. Everyone said he waas very very ill. He is now clear of that flu and has taken Tamiflu to help with any others. He also was on 4 different antibiotics and hope that will help him through the school year.
I want to thank everyone for your prayers, words of encourgement, for listening, for all the help (food, going to my house, taking the chickens, helping with the other animals and for our care packages and more). I dont think I could have made it for 12 days taking care of Brandon without you guys.
Love you and more later.
Leah
Brandon will need to recover at home for two more weeks. His lungs are still congested, especially on the right side. He is also very weak and lost 10 pounds. But we are both glad to get home.
Now we need to figure out how to play Beatles Rock Band. Any volunteers on coming over a giving a few pointers let me know.
Finally today the doctors told me that Brandon had the H1N1 flu and that he was very lucky it did not get worse. Everyone said he waas very very ill. He is now clear of that flu and has taken Tamiflu to help with any others. He also was on 4 different antibiotics and hope that will help him through the school year.
I want to thank everyone for your prayers, words of encourgement, for listening, for all the help (food, going to my house, taking the chickens, helping with the other animals and for our care packages and more). I dont think I could have made it for 12 days taking care of Brandon without you guys.
Love you and more later.
Leah
Monday, September 14, 2009
Finally out of ICU
Today was a fast moving day. After a complete night without the Bipap machine and only on oxygen, Brandon transitioned to just oxygen through the cannula. That is significant because oxygen through the cannula is much less oxygen than oxygen through a mask. So Brandon is on a small amount of oxygen. On top of making great progress on the oxygen, the lungs sound much better. The lungs still have a way to go before they are clear, but there is significant air movement. In addition, Brandon has been fever free for two days and he was removed from isolation.
This morning the intensive care physician visited with us and said they wanted to remove Brandon from all the IVs, put him on cannula oxygen and move him to a regular room. However, as the day progressed we found out that all the rooms were full due to the large number of kids going to the ER. Last night the ER was standing room only. Finally this afternoon a room opened and he was moved to room 434, a regular room not in ICU or intermediate care. He is still receiving respiratory therapy.
Now we have a few remaining things that we haven't spend too much energy addressing while he was in ICU. The first is Brandon's g-tube. I think I mentioned that the g-tube was bleeding out the sides when we were admitted. It turns out there was a significant infection in the g-tube and it needed medication to clear. We needed to remove the old g-tube and replace with a new one. Dr Zweinner decided for now to place a long regular g-tube and not the kind Brandon had in previously. This allowed the site to clear and allow time before we place a new mic-key. I know alot of medical talk, but the new mic-key opens like a beach ball and is flat to the stomach. The old kind that he has in currently hangs about 5 inches out of the stomach. If you are an active kid the risk of pulling it out are very high. So we need to repair this before we go.
The second issue is that Brandon's condition possibly was worse because he may have been aspirating on Saturday before we were admitted. His swallowing became worse on Friday and Saturday before we were admitted and I was worried about aspiration. Because his lungs are so bad now I don't want to go home, have Brandon start to eat and drink and end out back here because he is aspirating food or drinks into his lungs. So tomorrow we are doing a swallow study to check for any aspiration. If he is aspirating we will have to change his diet until he is stronger.
The last more irritating issue is the one I want addressed before we go. Remember the reason I started this blog is because Brandon had surgery on his foot. That was over 7 weeks ago and this Thursday the cast was to come off and the brace we had molded would be placed. I don't know if you have ever had a cast on, and one on for over 2 months, but the only thing you want is to have it off. The site has healed and he is ready for the foot and leg to be out of a cast. So this is the irritating thing. We were afraid that the surgery site had become infected and had to remove the walking cast Brandon had on that Scottish Rite put on 3 weeks ago. He was up and walking on the cast and was only using the wheelchair for long distances. Kind of a big deal when you are in high school. The orthopedic surgeon on call was asked to contact Scottish Rite and see what they wanted to do when we found out the surgery site was fine. It was Labor Day weekend and an intern at Scottish Rite said to put the cast back on, so the orthopedic surgeon put the cast back on but not for walking. I complained that we were going backwards and not forwards. So again this weekend the ortho guys came back and placed a splint that can be removed, but you cant walk on it. I complained again and they said they could place the brace if Scottish Rite would ship it. So now we are in between the two hospitals and Brandon basically may leave here without being able to bear any weight AGAIN. Okay I know - blah blah blah. But it is irritating.
Bottom line we are looking at a possible mid week discharge after we try to get his lungs clearer, breathing better and these three issues above. When the intensive care physician told Brandon we would be discharged this week he started squealing and clapping for joy. It was great to see. More tomorrow.
Leah
This morning the intensive care physician visited with us and said they wanted to remove Brandon from all the IVs, put him on cannula oxygen and move him to a regular room. However, as the day progressed we found out that all the rooms were full due to the large number of kids going to the ER. Last night the ER was standing room only. Finally this afternoon a room opened and he was moved to room 434, a regular room not in ICU or intermediate care. He is still receiving respiratory therapy.
Now we have a few remaining things that we haven't spend too much energy addressing while he was in ICU. The first is Brandon's g-tube. I think I mentioned that the g-tube was bleeding out the sides when we were admitted. It turns out there was a significant infection in the g-tube and it needed medication to clear. We needed to remove the old g-tube and replace with a new one. Dr Zweinner decided for now to place a long regular g-tube and not the kind Brandon had in previously. This allowed the site to clear and allow time before we place a new mic-key. I know alot of medical talk, but the new mic-key opens like a beach ball and is flat to the stomach. The old kind that he has in currently hangs about 5 inches out of the stomach. If you are an active kid the risk of pulling it out are very high. So we need to repair this before we go.
The second issue is that Brandon's condition possibly was worse because he may have been aspirating on Saturday before we were admitted. His swallowing became worse on Friday and Saturday before we were admitted and I was worried about aspiration. Because his lungs are so bad now I don't want to go home, have Brandon start to eat and drink and end out back here because he is aspirating food or drinks into his lungs. So tomorrow we are doing a swallow study to check for any aspiration. If he is aspirating we will have to change his diet until he is stronger.
The last more irritating issue is the one I want addressed before we go. Remember the reason I started this blog is because Brandon had surgery on his foot. That was over 7 weeks ago and this Thursday the cast was to come off and the brace we had molded would be placed. I don't know if you have ever had a cast on, and one on for over 2 months, but the only thing you want is to have it off. The site has healed and he is ready for the foot and leg to be out of a cast. So this is the irritating thing. We were afraid that the surgery site had become infected and had to remove the walking cast Brandon had on that Scottish Rite put on 3 weeks ago. He was up and walking on the cast and was only using the wheelchair for long distances. Kind of a big deal when you are in high school. The orthopedic surgeon on call was asked to contact Scottish Rite and see what they wanted to do when we found out the surgery site was fine. It was Labor Day weekend and an intern at Scottish Rite said to put the cast back on, so the orthopedic surgeon put the cast back on but not for walking. I complained that we were going backwards and not forwards. So again this weekend the ortho guys came back and placed a splint that can be removed, but you cant walk on it. I complained again and they said they could place the brace if Scottish Rite would ship it. So now we are in between the two hospitals and Brandon basically may leave here without being able to bear any weight AGAIN. Okay I know - blah blah blah. But it is irritating.
Bottom line we are looking at a possible mid week discharge after we try to get his lungs clearer, breathing better and these three issues above. When the intensive care physician told Brandon we would be discharged this week he started squealing and clapping for joy. It was great to see. More tomorrow.
Leah
Sunday, September 13, 2009
The UnKnown Diagnosis
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
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
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
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