He's doing much better now and looking more like himself!! 
Tuesday, January 20, 2015
Appointment Week capped off with a PICU stay
So last week was Thomas's appointment week. He started the week off with his Hypertension clinic to follow up on his chronic high blood pressure from all the hospital stays. This appointment was a good one, they took his blood pressure a few times and listened to his heart and all looked good. He had a normal blood pressure and they aren't worried about it. They think the way they take his blood pressure when we are in the ICU isn't accurate since his size is between the cuffs. I am both glad and frustrated to hear this. I am glad that he doesn't have chronic high blood pressure and we don't have to go on a wild goose chase to figure out what would be causing it, but I am frustrated because sometimes that keeps us in the hospital longer and puts him on meds that are unnecessary. At the end of the day, though, it is good news and we were discharged from nephrology. Then on Tuesday, he was scheduled for a Neurosurgery follow up to see how we are doing since the decompression and to explain the results of the MRI that he had done mid-December, unfortunately our surgeon got called away last minute on emergency surgery so that one had to get rescheduled. Next up, on Wednesday, we had a nurse from the Bureau of Children with Medical Handicaps come to the house to explain the BCMH program to us and help us apply. This is a very helpful program that the state of Ohio offers to help families that have kids with special needs pay bills that their insurance won't cover based on the diagnosis and needs of the kid. When talking to insurance or nursing staff that can potentially give us more help with all that Thomas needs, it is emotionally draining. Most of the time, when we discuss Thomas to people or explain his needs, we are very positive and pro-active and always make sure to hit the high points, but when assistance is going to be based on his diagnoses and his overall health, you have to list out EVERYthing. Don't sugar coat and don't play down, they need to know everything and all the nitty gritty that you need. This takes it's toll. I can feel myself grieving all over again as I list out all of his challenges....it seems never ending when you list them out back to back to back and you can see the person struggling to keep up in writing it all down, or even better they ask you to slow down or make a comment about how they are running out of room on their paper. To be honest, this breaks me and I definitely need a moment to myself after one of these visits. I used to feel bad about how listing out HIS challenges in every detail would break ME....sounds pretty selfish, but I realized that as a parent, his challenges are mine too; just as his successes will be also. Yes, they won't affect me like they will affect him, but they do still affect me, so it's ok that I hurt to list them all out, it's ok for me to take a moment to grieve after being hit in the face with all that we are up against, because it is going to be hard, but we can do hard things. And although the hard moments are really low, probably lower than other parenting moments that we have gone through, I think the great moments will be fantastically great because of the back story that will be behind them. So since I plan on celebrating those fantastically great moments, it's ok for me to grieve in the hard ones too. But, I digress. The BCMH nurse was very helpful and we have applied for the program and hopefully will qualify for some assistance. Then on Thursday we met with the feeding team to see if he was ready for solid foods. This was a long clinic visit, but he did well. They watched him breastfeed and bottle feed and assessed him. They are confident that we can start solid food, but will probably need help along the way with textures and things of that nature, so we will do weekly occupational therapy appointments to help him along this process. This is good news because we need him to gain weight. He has plateaued in his growth and the concern is that he is working too hard to breath and using up all his calories (I think I mentioned this in the last post), so hopefully starting solid foods and staying out of the hospital will help him do that....this leads us to now...in the hospital. When we were at our feeding team visit I dropped off a urine sample to see if it had any growth since he had had a fever a few days before. It came back positive for bacteria growth of a bacteria called klebsiella. So we had to go on antibiotics to fight this UTI. We started the meds on Friday night, then on Saturday he was uncomfortable, he didn't seem himself and his stridor was starting to pick up again. We thought this was due to the UTI and the antibiotics just hadn't kicked in yet, but on Sunday it got worse and he couldn't settle down, so Sunday night I brought him in. The drive to the hospital, on a good day, takes about 45 minutes. He seemed ok when we left the house, just upset and uncomfortable, but not in distress. As we drove he seemed to be getting more upset. By the time we pulled into the Emergency Room he was not in good shape. I am not sure if it was just the timing of working hard all day had come to a head right then, or he wasn't able to breath as well in his car seat, or he was just mad at being put in the car seat after being held all day, but whatever it was, he had lost his color. He wasn't blue, but he was definitely dusky looking. There was a line at the ER, but they heard us coming a mile away and just took us around everyone and straight back to trauma bay. They put some oxygen on him right away and went through the normal routine of getting the IV and breathing treatments and the whole shebang that goes with the trauma bay. His chest X-ray looked good and he responded well to the oxygen. They got us up to the PICU and on the heliox machine. It was about midnight at this point. He seemed comfortable and ready to settle in for the night, but around 1 am his heart rate sky rocketed and hung out in the 210's (normal for him is 140's) and we couldn't get it down. They tried to give him more steroids, but it didn't help. They put him on some acetaminophen to see if it was pain, but that didn't help. This went on all night and you could see how tired he was, finally they gave him some medicine that basically sedated him so he could settle down, this got his heart rate to the 190's, but not as low as they needed it. They were preparing me for a breathing tube to be put into him, which is dangerous for Thomas since his vocal cords are paralyzed, it would be hard to get the breathing tube out without causing damage. They upped the meds and put him on a BiPAP machine to help him breath as a last resort before breathing tube. He looked like a little scuba diver. It took him about 30 minutes to respond to the machine (they expected him to respond in about 5 minutes, but he always paves his own path). He finally settled down and his work of breathing relaxed and he was able to sleep with a normal heart rate. He stayed on the machine for about 6 hours, then he was stepped down to the high flow oxygen and now he is on normal oxygen, with his next step down in about two hours to room air. The really cool thing is that they were hesitant to take off the BiPAP, but he seemed hungry (whenever we are admitted I can't feed him for a day or two because they are worried about his breathing), so they let us take off the mask to feed him, thinking we would put it back on, but we gave him a bottle and he responded amazingly. His sats actually went up and he seemed very content, so they didn't put us back on the machine, they just let him step down to the high flow....he just needed to eat. Food solves everything, I am hoping this will also be the case when we start to do the solid foods - food will solve it and avoid a trach!
Friday, January 9, 2015
Our little snowflake
Some updates on Thomas...
After a pretty healthy and festive December at home with everyone, Thomas caught a corona virus and bronchiolitis the first weekend of 2015. This landed him in the hospital, again, since it made it very hard for him to breath on his own. His oxygen saturation was as low as 72% at one time and his breathing rate was as high as 70-75 breaths/minute (normal saturation is 98-100 and a good respiratory rate for him should be in the 30's). In the hospital, they gave him some of the heliox (helium/oxygen mixture) and had him on high-flow oxygen until he was stable. He was in the hospital for 3 days. He was discharged Sunday night and we had to be back in Cincinnati on Monday morning for our second Myelomeningocele clinic. Last clinic, which was our first, I wrote about how it was comforting to meet all these doctors who would be a major part of Thomas's care as he grows, like meeting family (ok, like meeting in-laws.......in a good way!). Thomas has been through so much since that first clinic appointment. We have been in the hospital 7 times and had 3 surgeries. I remember at that first appointment thinking how easy this was, all the doctors had a very positive outlook on his future and what he would be able to do. The lovely thing, looking back on the hospital visits, is that I was right, the various doctors from our clinic were like family. They always came to check on us when he was admitted and were there to answer questions or to help advocate for Thomas as we navigated a path through it all. First up this clinic visit, was his urologist. This visit we had a formal urodynamics done and a renal ultrasound to look at his kidneys. For the formal urodynamics, they filled up his bladder and put some electrodes on him to measure the pressures in and around his bladder as it filled and emptied. His bladder only was able to fill with 15mL and it seemed like it could only actively hold 7 mL before the pressure rose. This is very small and leads his urologist to believe that his bladder is very rigid and not expanding and growing like it should. So as it fills, instead of expanding to hold more urine, it just spasms and since his muscles don't work together due to the nerve damage from his spina bifida, the muscle to release the urine down his urethra (sphincter) doesn't get the message that the bladder is full and it should open and this just causes the pressure to increase. When the pressure is increased it has to release somehow and so the easiest way (if he isn't cathed) is for the urine to go back up the tubes leading to the kidneys (ureters) in order to relieve the pressure. This is bad for the kidneys and can lead to kidney damage and even kidney failure. On his ultrasound it appeared that the left kidney is slightly swollen so it has sustained some damage since his original ultrasound done at birth. In order to protect his kidneys from any further damage, he put Thomas on a drug that is a muscle relaxer and will relax his bladder so it can expand to hold more urine, hopefully decreasing the pressure and keeping the urine from going back up the ureters into the kidneys. We have also been asked to up our frequency of cathing to ensure his bladder doesn't get too full. While we don't like to hear that his kidney has changed since his last ultrasound, it is good that we caught this early and can adjust our tactics to help protect from further damage. We will do another follow up in 3 months to see how he is doing on the ditropan (the muscle relaxer for his bladder). This drug, while completely necessary and kidney saving, is not awesome in it's side effects. Many patients experience constant over heating, other have had constipation, dry mouth, blurred vision, fatigue, nausea, and weakness. Looking over those side effects and comparing them to what Thomas already has going on, it doesn't seem like something that will be very helpful; weakness - he already has significant weakness that we are working hard to overcome so he can just function on a very basic level; blurred vision - he already has some poor vision and we are trying to track down how much vision loss he has sustained through all of this; constipation - he has bladder issues as it is and we are expecting him to have bowel issues as well once we start solid food. So to say the least, I was not excited to get this news. It seems like he can't catch a break. Next up was the physical medicine/rehab doctors. They observed Thomas and played with his legs and said that he seems to have decreased movement and strength since our last meeting. This is something that I have been thinking also so you would think that it wouldn't be much of a surprise to hear someone else say it out loud, but this one hurt. All along, through all the hospital stays and surgeries, for some reason, I kept thinking that once we get over these hurdles, he will be ok and function like a typical kid and maybe feel included, but to hear that this part has decreased and his prognosis of mobility might change, broke my heart. If he has significant vision loss AND has mobility challenges, possibly putting him in a wheelchair, that just seems like such a difficult route for anyone to take. Last up was the developmental pediatrician. He came in and we discussed the stridor and he had concerns about Thomas's weight. He hasn't put on much weight recently. This could be concerning because it could be stemming from the stridor, since he is working so hard to breath and just get enough air, he is burning through his calories and not able to gain weight, but his lack of weight gain could also be from the various hospital stays where they don't allow me to feed him for a few days, so hopefully it is the latter and he bounces back, otherwise we will have to address the stridor soon. I know this is looming, but was hoping to put it off as long as we could. To address the stridor, we will need to find the best route, which basically means pick your poison. There are a few options; a tracheostomy, which is a hole from the outside of your neck into your windpipe to create an airway; cordotomy, which means to cut the vocal cord to make more room for the air, but this will affect the voice; arytenoidectomy, which is cutting of the cartilage on the back half of the vocal cords and also affects the voice and could add a risk of aspirating; the other one that I have only heard of and still need to learn about is the posterior anterior cricoid split. After meeting with all of our doctors, our nurse comes in to see if we have any questions. I asked her about all the different routes for helping with the stridor and what others have done and also about how to best know if it's his vision that is holding him back from looking at us and recognizing faces or something else and what kind of experience others in clinic have had and she said that unfortunately spina bifida is a snowflake defect, no two are a like and Thomas is definitely forging his own path. While I am proud of him for being his own person and a beautiful unique little snowflake, this also just made me feel lonely. I have written before about how I crave familiarity with him and want him to be like other children with spina bifida so we can see what path they took and have confidence in our decisions knowing that others have had success. Had I spoken with someone who chose to do the prenatal surgery, we may have opted to do it. Had we met someone who had the stridor and done the decompression when it first presented, we may have saved some vision loss and vocal cord damage. I know hindsight is 20/20 and there is nothing we can do about it now, but I don't want to make those mistakes again, I want to be fully informed and understand EVERY detail of EVERY option. Next up we have hypertension clinic on Jan 12 and a neuro follow up on Jan 13 and a feeding team clinic on Jan 15. Hopefully those appointments bring good news! Will post again soon.
After a pretty healthy and festive December at home with everyone, Thomas caught a corona virus and bronchiolitis the first weekend of 2015. This landed him in the hospital, again, since it made it very hard for him to breath on his own. His oxygen saturation was as low as 72% at one time and his breathing rate was as high as 70-75 breaths/minute (normal saturation is 98-100 and a good respiratory rate for him should be in the 30's). In the hospital, they gave him some of the heliox (helium/oxygen mixture) and had him on high-flow oxygen until he was stable. He was in the hospital for 3 days. He was discharged Sunday night and we had to be back in Cincinnati on Monday morning for our second Myelomeningocele clinic. Last clinic, which was our first, I wrote about how it was comforting to meet all these doctors who would be a major part of Thomas's care as he grows, like meeting family (ok, like meeting in-laws.......in a good way!). Thomas has been through so much since that first clinic appointment. We have been in the hospital 7 times and had 3 surgeries. I remember at that first appointment thinking how easy this was, all the doctors had a very positive outlook on his future and what he would be able to do. The lovely thing, looking back on the hospital visits, is that I was right, the various doctors from our clinic were like family. They always came to check on us when he was admitted and were there to answer questions or to help advocate for Thomas as we navigated a path through it all. First up this clinic visit, was his urologist. This visit we had a formal urodynamics done and a renal ultrasound to look at his kidneys. For the formal urodynamics, they filled up his bladder and put some electrodes on him to measure the pressures in and around his bladder as it filled and emptied. His bladder only was able to fill with 15mL and it seemed like it could only actively hold 7 mL before the pressure rose. This is very small and leads his urologist to believe that his bladder is very rigid and not expanding and growing like it should. So as it fills, instead of expanding to hold more urine, it just spasms and since his muscles don't work together due to the nerve damage from his spina bifida, the muscle to release the urine down his urethra (sphincter) doesn't get the message that the bladder is full and it should open and this just causes the pressure to increase. When the pressure is increased it has to release somehow and so the easiest way (if he isn't cathed) is for the urine to go back up the tubes leading to the kidneys (ureters) in order to relieve the pressure. This is bad for the kidneys and can lead to kidney damage and even kidney failure. On his ultrasound it appeared that the left kidney is slightly swollen so it has sustained some damage since his original ultrasound done at birth. In order to protect his kidneys from any further damage, he put Thomas on a drug that is a muscle relaxer and will relax his bladder so it can expand to hold more urine, hopefully decreasing the pressure and keeping the urine from going back up the ureters into the kidneys. We have also been asked to up our frequency of cathing to ensure his bladder doesn't get too full. While we don't like to hear that his kidney has changed since his last ultrasound, it is good that we caught this early and can adjust our tactics to help protect from further damage. We will do another follow up in 3 months to see how he is doing on the ditropan (the muscle relaxer for his bladder). This drug, while completely necessary and kidney saving, is not awesome in it's side effects. Many patients experience constant over heating, other have had constipation, dry mouth, blurred vision, fatigue, nausea, and weakness. Looking over those side effects and comparing them to what Thomas already has going on, it doesn't seem like something that will be very helpful; weakness - he already has significant weakness that we are working hard to overcome so he can just function on a very basic level; blurred vision - he already has some poor vision and we are trying to track down how much vision loss he has sustained through all of this; constipation - he has bladder issues as it is and we are expecting him to have bowel issues as well once we start solid food. So to say the least, I was not excited to get this news. It seems like he can't catch a break. Next up was the physical medicine/rehab doctors. They observed Thomas and played with his legs and said that he seems to have decreased movement and strength since our last meeting. This is something that I have been thinking also so you would think that it wouldn't be much of a surprise to hear someone else say it out loud, but this one hurt. All along, through all the hospital stays and surgeries, for some reason, I kept thinking that once we get over these hurdles, he will be ok and function like a typical kid and maybe feel included, but to hear that this part has decreased and his prognosis of mobility might change, broke my heart. If he has significant vision loss AND has mobility challenges, possibly putting him in a wheelchair, that just seems like such a difficult route for anyone to take. Last up was the developmental pediatrician. He came in and we discussed the stridor and he had concerns about Thomas's weight. He hasn't put on much weight recently. This could be concerning because it could be stemming from the stridor, since he is working so hard to breath and just get enough air, he is burning through his calories and not able to gain weight, but his lack of weight gain could also be from the various hospital stays where they don't allow me to feed him for a few days, so hopefully it is the latter and he bounces back, otherwise we will have to address the stridor soon. I know this is looming, but was hoping to put it off as long as we could. To address the stridor, we will need to find the best route, which basically means pick your poison. There are a few options; a tracheostomy, which is a hole from the outside of your neck into your windpipe to create an airway; cordotomy, which means to cut the vocal cord to make more room for the air, but this will affect the voice; arytenoidectomy, which is cutting of the cartilage on the back half of the vocal cords and also affects the voice and could add a risk of aspirating; the other one that I have only heard of and still need to learn about is the posterior anterior cricoid split. After meeting with all of our doctors, our nurse comes in to see if we have any questions. I asked her about all the different routes for helping with the stridor and what others have done and also about how to best know if it's his vision that is holding him back from looking at us and recognizing faces or something else and what kind of experience others in clinic have had and she said that unfortunately spina bifida is a snowflake defect, no two are a like and Thomas is definitely forging his own path. While I am proud of him for being his own person and a beautiful unique little snowflake, this also just made me feel lonely. I have written before about how I crave familiarity with him and want him to be like other children with spina bifida so we can see what path they took and have confidence in our decisions knowing that others have had success. Had I spoken with someone who chose to do the prenatal surgery, we may have opted to do it. Had we met someone who had the stridor and done the decompression when it first presented, we may have saved some vision loss and vocal cord damage. I know hindsight is 20/20 and there is nothing we can do about it now, but I don't want to make those mistakes again, I want to be fully informed and understand EVERY detail of EVERY option. Next up we have hypertension clinic on Jan 12 and a neuro follow up on Jan 13 and a feeding team clinic on Jan 15. Hopefully those appointments bring good news! Will post again soon.
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