Carson is home!! Well, the truth is that he’s been home for two weeks. If you couldn’t tell already, this has drastically altered our free time, which in turn has impacted the frequency of blog updates. But have no fear! I’m going to at least try to put out an update once or twice a month. I mean really, do you guys want to read about the daily routine of cleaning up spit up, suctioning the trach, checking the consistency of Carson’s poop? I didn’t think so.
So what’s new? Well Carson is doing great at home. He’s gained 5oz since he’s been home. He’s been able to be weaned down to 1/8th of a liter of oxygen. We’re hoping he’s off that soon. That way he may not need to be hooked to his monitor in the daytime and it’s one less thing that we need to pack around. We’re looking toward a surgery in the near future to repair his inguinal hernias. That’s right, it’s plural; he’s got two. We’ll find out the date for that this month.
It’s been three months since Carson was born and that means we get to take pictures to send to Dr. Fearon in Texas. We’re going to get the date of our first surgery scheduled so our families and friends can plan for it. One huge blessing is that my parents (Steve’s parents) have offered to drive all of us down to Texas for all of Carson’s surgeries next year. What a relief to know that Avery will be able to come with us and will be well spoiled, um, I mean well taken care of.
We do have a night nurse in our home at night for 12 hours each night. It was a little touch in go at first with our nursing company. They sent us nurses that had no experience with trachs. We were able to get everything worked out now and we have more experienced nurses in our home.
We’re doing as best as can be expected as a family. We’re pretty home bound since one of us always has to be with Carson and if we do go out, it takes a lot of prep work. We have some problems with Carson’s heart and oxygen monitor not holding a charge long enough. So we’re getting a new one and that will allow us to go out together. So far, we’re all still sane and alive, which is good.
Saturday, July 10, 2010
Monday, June 21, 2010
A New Way of Life
We spent last Saturday at the hospital and did our “room in” with Carson to show everyone that we are capable of taking care of him. We got to the hospital at 10:30 am and stayed until 7:00 pm. We were put in a private family room and given some times for when we needed to do our “cares” for Carson. We found that he needs to be suctioned often when he is awake, but not much when he is sleeping. He also let us know that he doesn’t like to have his diaper changed. Everything went really well and Heather and I feel capable of taking care of Carson by ourselves. We’ll just see how things go when we get him home. It will be a big adjustment for us, but it will be very good for Carson to be at home.
We’re gearing up for bring Carson home sometime this week. We’ve run into a few snags with paperwork getting from the hospital to our insurance so it’s delayed his departure. We were thinking Wednesday or Thursday, but our insurance told us that even though they can approve the night nursing by Wednesday, that it will take some time for the nursing company to get that info and get nurses lined up for Carson. So we’re not totally sure what day that will be now; hopefully still this week or this weekend.
Carson’s room is starting more and more to look like a hospital. On Saturday the home care company brought us his oxygen saturation and heart monitor, his feeding pump, and his suction machine. We’ve also got an IV stand and will be getting a humidifier machine and oxygen tanks. UPS delivered three large boxes of medical supplies full of stuff to take care of Carson’s trach. We’ll also be getting supplies for his g-tube and other odds and ends that we requested from the home care company. It’s all a little overwhelming, but we’re hanging in there.
We’re gearing up for bring Carson home sometime this week. We’ve run into a few snags with paperwork getting from the hospital to our insurance so it’s delayed his departure. We were thinking Wednesday or Thursday, but our insurance told us that even though they can approve the night nursing by Wednesday, that it will take some time for the nursing company to get that info and get nurses lined up for Carson. So we’re not totally sure what day that will be now; hopefully still this week or this weekend.
Carson’s room is starting more and more to look like a hospital. On Saturday the home care company brought us his oxygen saturation and heart monitor, his feeding pump, and his suction machine. We’ve also got an IV stand and will be getting a humidifier machine and oxygen tanks. UPS delivered three large boxes of medical supplies full of stuff to take care of Carson’s trach. We’ll also be getting supplies for his g-tube and other odds and ends that we requested from the home care company. It’s all a little overwhelming, but we’re hanging in there.
Sunday, June 13, 2010
We're Still Here
I do apologize for not posting any blogs in the last two weeks. It has been a little crazy around here with me getting sick and Jorrey taking a trip home last weekend. On the bright side, everything that I have to report is good news; so here it is!
Carson is doing very well and has been healed of the pneumonia. He is getting his last dose of antibiotics tomorrow. He is also back on breast milk and continues to have his feeding times decrease. Having a G-tube, he gets fed over a time period. It started at 3 hours and has been decreased down to 2 hours. They are trying to have him be fed just as quickly as gravity allows, meaning that he would get his food into his stomach within 10 minutes. Once he gets to this point, he will be ready to go home. They have said this could be within a week.
As for his Brady spells; the doctors haven’t expressed a lot of concern about those lately. They think that they are caused by stimulation of the vagal nerve. This is common with babies that are premature and that have a lot going on medically. Coughing, getting suctioned, or needing to be suctioned are things that seem to bother Carson the most. But, his spells haven’t lasted very long if Carson gets suctioned quickly. So it looks like we don’t have to wait one week after every time that happens for Carson to be able to go home.
We’re trying to not get too excited since things are ever changing here, but we’re excited! The last two things that need to be done for Carson to come home are taking the G-tube class, which we are doing Tuesday and doing a room-in, staying 24 hours at the hospital with Carson to prove that we can take care of him. Well, we’re ready so bring it on. Even though this will be difficult, God will carry us though.
Carson is doing very well and has been healed of the pneumonia. He is getting his last dose of antibiotics tomorrow. He is also back on breast milk and continues to have his feeding times decrease. Having a G-tube, he gets fed over a time period. It started at 3 hours and has been decreased down to 2 hours. They are trying to have him be fed just as quickly as gravity allows, meaning that he would get his food into his stomach within 10 minutes. Once he gets to this point, he will be ready to go home. They have said this could be within a week.
As for his Brady spells; the doctors haven’t expressed a lot of concern about those lately. They think that they are caused by stimulation of the vagal nerve. This is common with babies that are premature and that have a lot going on medically. Coughing, getting suctioned, or needing to be suctioned are things that seem to bother Carson the most. But, his spells haven’t lasted very long if Carson gets suctioned quickly. So it looks like we don’t have to wait one week after every time that happens for Carson to be able to go home.
We’re trying to not get too excited since things are ever changing here, but we’re excited! The last two things that need to be done for Carson to come home are taking the G-tube class, which we are doing Tuesday and doing a room-in, staying 24 hours at the hospital with Carson to prove that we can take care of him. Well, we’re ready so bring it on. Even though this will be difficult, God will carry us though.
Monday, May 31, 2010
Diagnosis: Pneumonia
It all started last week, when Heather and I were visiting Carson. Heather noticed it before I did that Carson was requiring to be suctioned more often. He’d been having more and more of the bradycardia spells; many of them being so severe that his oxygen saturations were dropping below 60 percent. This past Sunday it culminated when Heather was holding Carson and he had another spell. He got a mucus plug, likely at the end of his trach tube, down inside his throat. His heart rate dropped and his oxygen sats dropped to 20 percent. The nurses had to take Carson from Heather’s arms and put him back in his bed to suction him. They tried and tried and they couldn’t get the plug to come out. Heather said she was ready to pull out the trach and put a new one in (Good thing she’s trained!). The nurses finally got the mucus plug out and everything returned to normal; his normal.
This all prompted Heather to again be the advocate for Carson, a new role that she’s been filling quite well. She asked the nurses if they had run any tests to see if Carson had an infection, since last time this happened he did have something infection related going on. They ran the blood tests and it came back that he had a high white blood cell count. This caused them to test the secretions from his lungs and that’s where they found the bacteria; it tested positive for pneumonia. Good thing Heather asked, considering that it’s been a week so far that all of this has been brewing.
So, they have reinserted his picc line, put him back on the ventilator, and are going to do another lumbar puncture to check for infection in his spine. They have him back on the antibiotics also. Heather said that they are going to talk with ENT to see if they can increase the size of Carson’s trach. Right now, his trach is size 3, but they want to get something bigger because the secretions from his lungs are very thick and they have a hard time getting those sucked out through the small tube. He also has a possible infection around the site of his G-tube; the one that goes to his stomach, the skin is very red.
So we’re hanging in there. This is all very hard to go through and understand, but we know that God is faithful and already knows the outcome of all of this. We’ll just cling to that.
This all prompted Heather to again be the advocate for Carson, a new role that she’s been filling quite well. She asked the nurses if they had run any tests to see if Carson had an infection, since last time this happened he did have something infection related going on. They ran the blood tests and it came back that he had a high white blood cell count. This caused them to test the secretions from his lungs and that’s where they found the bacteria; it tested positive for pneumonia. Good thing Heather asked, considering that it’s been a week so far that all of this has been brewing.
So, they have reinserted his picc line, put him back on the ventilator, and are going to do another lumbar puncture to check for infection in his spine. They have him back on the antibiotics also. Heather said that they are going to talk with ENT to see if they can increase the size of Carson’s trach. Right now, his trach is size 3, but they want to get something bigger because the secretions from his lungs are very thick and they have a hard time getting those sucked out through the small tube. He also has a possible infection around the site of his G-tube; the one that goes to his stomach, the skin is very red.
So we’re hanging in there. This is all very hard to go through and understand, but we know that God is faithful and already knows the outcome of all of this. We’ll just cling to that.
Wednesday, May 26, 2010
Better Late Than Never...
I was recently told that I have pictures of Carson in clothing. And I was told that I mentioned in a previous blog that I would put them up here. As you can see, my brain is not working right now. Here are the pictures that I have.
Also, Carson's G-tube surgery was a success and he is recovering well. We also did trach training today and I was able to change out his trach tube for my first time. Heather is up tomorrow for her first change. It was scary, but I think that we’ll get used to doing that. Sorry this is short, but I’m tired and all I want to do is sleep.
Also, Carson's G-tube surgery was a success and he is recovering well. We also did trach training today and I was able to change out his trach tube for my first time. Heather is up tomorrow for her first change. It was scary, but I think that we’ll get used to doing that. Sorry this is short, but I’m tired and all I want to do is sleep.
Tuesday, May 25, 2010
Surprise
Surprise! We found out today that Carson is going to get his G-tube sometime tomorrow. They have him in the surgery schedule and we’ll know what time it is later tonight. We weren’t expecting this surgery until next week, but the pediatric surgeon decided that there was no reason to wait. They have also decided against doing the procedure to shrink the opening to his stomach. After he gets the G-tube, he’ll be on IV fluids for a while and then they will start feeding him again. Once he’s up to his regular feed amounts and if everything looks good, it sounds like they’ll let us have him. So being praying that everything goes well and that we’ll get to take him home soon!!
We started Carson’s trach care training on Monday. This has been something that I’m nervous about doing. There is a lot of information to take in and it seems like I’ll never remember everything. Our first class was about the types of trach tubes and the equipment used to care for it. We also learned about the signs that tell us whether he is breathing ok or if he needs attention. We got to use the stethoscope to listen to his lungs and learned how to take his heart rate. We learned about the things we need to be aware of like aerosol sprays and bath time, and also found out that we CAN keep the cats; just as long as they stay out of his room. We feel more informed and I’m sure that our class today will overload us some more.
We did have one scary moment in the NICU after our training yesterday. Right at the end of our training, Carson’s respiratory therapist was suctioning out his trach tube (putting a small tube inside Carson’s trach tube to suck out all of the mucus buildup). Carson’s heart rate dropped below 90 during this and caused a lot of alarms to go off, but our RT assured us that everything was fine; especially since Carson was still alert and moving. But after the RT left and I was holding Carson, he had another episode where his heart rate dropped below 80 and he went limp in my arms and turned dusky. The nurse had me rub his back, but his heart rate was not coming back up. I had two nurses rush over and one of them suctioned Carson very quickly. His heart rate came back up and then everything was fine. We’re not really sure what happened, and the nurses all acted as if that was normal. So we’re going to be asking some questions today to see what was going on. They did mention that when he gets suctioned that it can drop his heart rate, but this happened well after he was last suctioned. It was a very tense moment and I was sweating bullets. Please pray that everything is ok. We’re not trying to worry everyone, so don’t be worried.
We can see that our lives are going to be full of surprises going forward. We’re trying to stay strong and positive, and look forward to how God is going to use Carson. One day at a time; yesterday was a little rough, but today is a new day.
We started Carson’s trach care training on Monday. This has been something that I’m nervous about doing. There is a lot of information to take in and it seems like I’ll never remember everything. Our first class was about the types of trach tubes and the equipment used to care for it. We also learned about the signs that tell us whether he is breathing ok or if he needs attention. We got to use the stethoscope to listen to his lungs and learned how to take his heart rate. We learned about the things we need to be aware of like aerosol sprays and bath time, and also found out that we CAN keep the cats; just as long as they stay out of his room. We feel more informed and I’m sure that our class today will overload us some more.
We did have one scary moment in the NICU after our training yesterday. Right at the end of our training, Carson’s respiratory therapist was suctioning out his trach tube (putting a small tube inside Carson’s trach tube to suck out all of the mucus buildup). Carson’s heart rate dropped below 90 during this and caused a lot of alarms to go off, but our RT assured us that everything was fine; especially since Carson was still alert and moving. But after the RT left and I was holding Carson, he had another episode where his heart rate dropped below 80 and he went limp in my arms and turned dusky. The nurse had me rub his back, but his heart rate was not coming back up. I had two nurses rush over and one of them suctioned Carson very quickly. His heart rate came back up and then everything was fine. We’re not really sure what happened, and the nurses all acted as if that was normal. So we’re going to be asking some questions today to see what was going on. They did mention that when he gets suctioned that it can drop his heart rate, but this happened well after he was last suctioned. It was a very tense moment and I was sweating bullets. Please pray that everything is ok. We’re not trying to worry everyone, so don’t be worried.
We can see that our lives are going to be full of surprises going forward. We’re trying to stay strong and positive, and look forward to how God is going to use Carson. One day at a time; yesterday was a little rough, but today is a new day.
Friday, May 21, 2010
No News is Good News?
This week has just flown by, but at the same time it seems like it just dragged on. There weren’t too many changes this week with Carson so I was trying to save up enough info to be able to do a post. Here’s what’s new.
Carson had his stomach scoped this week to evaluate if he could have a G-tube; a feeding tube straight through his abdomen into his stomach. The doctor said that everything looked good and that he will be able to have the tube. They also discussed doing something similar to a lap-band to Carson stomach to help control his acid reflux. There is a big risk of complications of having acid reflux and having a trach tube. It has to do with the acid reflux coming up and then going down into the lungs. So if the shrink the opening to Carson’s stomach then there will be less of a chance of that happening. So there is a good chance that the surgery will happen next week sometime. That’s good news even if it doesn’t sound like it because that is the last thing that we are waiting for to have Carson come home. So we could be close, really close.
Carson is growing. He’s up to 6.5 pounds. That’s a pound more than when he was born. So it looks like his stomach and intestines are working. And Heather tells me that they work really well because he seems to always poop when she is holding him. He is also still on the ventilator. They tried to put him back on his trach mask and that only lasted about 20 min. So keep praying that he get past the vent. Please also pray that we can get nurses to come into our home to take care of Carson at night. Utah has a short supply of in-home nurses; we’ve heard this from the hospital.
That’s it. Really.
Carson had his stomach scoped this week to evaluate if he could have a G-tube; a feeding tube straight through his abdomen into his stomach. The doctor said that everything looked good and that he will be able to have the tube. They also discussed doing something similar to a lap-band to Carson stomach to help control his acid reflux. There is a big risk of complications of having acid reflux and having a trach tube. It has to do with the acid reflux coming up and then going down into the lungs. So if the shrink the opening to Carson’s stomach then there will be less of a chance of that happening. So there is a good chance that the surgery will happen next week sometime. That’s good news even if it doesn’t sound like it because that is the last thing that we are waiting for to have Carson come home. So we could be close, really close.
Carson is growing. He’s up to 6.5 pounds. That’s a pound more than when he was born. So it looks like his stomach and intestines are working. And Heather tells me that they work really well because he seems to always poop when she is holding him. He is also still on the ventilator. They tried to put him back on his trach mask and that only lasted about 20 min. So keep praying that he get past the vent. Please also pray that we can get nurses to come into our home to take care of Carson at night. Utah has a short supply of in-home nurses; we’ve heard this from the hospital.
That’s it. Really.
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