Tuesday, September 14, 2010
Heather called in to Carson’s primary care doctor and got an appointment for the afternoon. (It would have been sooner if they would have called back sooner!) When they got to the doctor’s office, Carson was put on their monitor and his heart rate was around 170 bpm resting (it’s usually at 130). Tony, Carson’s doctor, gave him a breathing treatment to see if it would help his labored breathing. It didn’t help much so he told us that we would have to admit Carson to the hospital. We decided to take him down to Primary’s since that’s where all of his care has been in the past.
When we got there we were put right into a room because his doctor called ahead and got a room set up for us (his doctor is so nice!). Once he was in the room, it quickly filled up with doctors and nurses and respiratory therapists. They tried to give him so more breathing treatments, but those didn’t help. They did a blood gas analysis and found that he had a high level of CO2 in his blood. He was moved to the pediatric ICU after that and was greeted there by a whole mess of doctors and nurses. He was put on a CPAP (Continuous Positive Airway Pressure) to help open up his lungs and get him to breathe off the CO2. When Heather and I left Friday night his heart rate was still very high and he was still very labored in his breathing.
We visited Carson again on Saturday night and he look a little better. He was awake and was sucking on his fingers like he does at home. They were still giving him breathing treatments and monitoring an on-again / off-again fever. We left that night hoping that he might be improving and home around midweek.
At 2:30 am Sunday, we got a phone call from the hospital. The nurse told Heather that everything was ok and that Carson was fine, but there was some trouble. Carson had gotten a plug in his trach and his O2 level dropped low and caused his heart to slow down to 30 bpm. They had to give him CPR and use a resuscitation bag on him to get oxygen into him and to get his heart beating faster. He made it through it but it sure gave us a scare. When we went to the hospital to see him on Sunday he looked worn out. He slept for our whole visit.
On Monday Heather went up to the hospital and was told that they had put Carson on a ventilator. They had switched him from the CPAP to the vent on Sunday, but what they told Heather was that Carson was very weak and was having trouble breathing on his own. So they turned on more of the controls on the machine to help him breathe. He was still sleepy on Monday.
Heather called the hospital today and Carson’s condition hasn’t improved or worsened. So, hopefully he’s working through the thick of it right now and will start improving soon. They are going to be putting a feeding tube down Carson’s throat and into his intestines. The ventilator has been pushing some air into Carson’s stomach and they need to vent that out. So as long as he’s on the vent he’ll have the feeding tube. His CO2 levels are still high but they aren’t too concerned about it right now because his PH level is ok.
So things are a little wild right now with Carson in the hospital, our plans for moving, and life in general. But we’re doing ok with all of the support that we have here.
Sunday, August 29, 2010
Surgery: Carson had his two inguinal hernias fixed two weeks ago. While they had him under they also circumcised him and had to descend his testicles (a common problem with the omphalocele). Everything is in the right place now and he’s healing very well since the surgery. At that same time he had an MRI of his head taken to look at the size of his ventricles in his brain and to check for a Chari malformation. Dr. Fearon spoke with me this week and said he was very surprised by the MRI. Everything looked great! His ventricles were average size and there was no Chari. We’re really happy about that; we treasure all the good news we can get.
Carson is off oxygen! He’s also been using his synthetic nose that goes on the end of his trach during the day, and then goes back onto humidified air at night. That means that we get to turn off the compressor during the daytime! Peace and quiet never sounded so good. Carson has been spitting up his feedings quite frequently also. We tried a number of things from changing his feedings to upping his medicine, to giving him less formula powder mixed with the breast milk. Nothing was working and we were fearing that Carson would need to have a nissen (a permanent surgery done to the valve at the top of his stomach; just google it, I’m not an expert). Heather, the good mommy that she is, has found out what is really bothering him. Frozen breast milk. Good thing that we don’t have a 5 cuft freezer downstairs that is full to the brim with it. So she has been giving him fresh milk and the spitting up is gone. I’m kind of surprised that our doctors missed that option.
Last month Dr. Fearon told us to expect for Carson to have his cranial vault surgery first, to fix the fused and separated plates in his head. He has since changed this because of the good results from the MRI and now wants to proceed as normal; fingers and toes first, head last. He said that that schedule will still depend on how Carson’s 6 months prictures look. Dr. Fearon said that he wants to wait as long as possible (not past 15 months) to do the vault. He said that because of Carson’s tall, skinny head, that he may not be able to wait that long because once the head gets too tall, it’s hard to get it back down into a normal shape. We’ll see what happens with that.
My dad (Stephen’s dad) has been working very diligently at finding donated transportation for us to get to Texas. Originally we had planned on driving down there all together, but a cheaper option would be to send Heather, Carson, and I down to Texas while my parents watch Avery here in Utah. (That way she gets super spoiled by Grandma Kitty and Grandpa Moose.) So far we have many very good options for free flights ranging from commercial flights from AA, to using private planes and corporate jets. I never realized how generous people are when it comes to children.
Carson is moving into his own bedroom tonight. We decided to move him out of the living room since he doesn’t need to be on the monitors during the day. That way, we can treat him more like a normal kiddo with regular nap times and so on. We have noticed that he sleeps a lot. We’re going to be talking with our pediatrician more about that this week.
Well I’m sure Heather will read this and tell me that I left out a ton of information. So plan on another post soon with all of the odds and ends. Until then…
Saturday, July 10, 2010
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.
Monday, June 21, 2010
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
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
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
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
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
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.
Monday, May 17, 2010
So thankfully Heather was at the hospital today when they were doing rounds and she was able to speak with the neonatalogist. He was very interested that we were working with Dr. Fearon and asked for his contact info so he could call him to discuss Carson’s situation. We are so relieved, and I mean SO relieved that they offered to do this. The neonatalogist sounds very willing to get input from Dr. Fearon and learn more about Apert Syndrome. This has always been our concern since he was born; that though our hospital is excellent, that they haven’t had an Apert baby in a long time. So I think we’ll sleep a little better from here on out.
During rounds they also talked about doing a scope of Carson’s esophagus and stomach to get an idea of what will be required for the G-tube. They will do the scope sometime this week and then schedule the surgery for the G-tube.
Please being praying for Heather and me as the weight of this situation is bearing heavy on us. We fully trust what God is doing. We are just exhausted from going non-stop all of the time. We are also having a hard time watching everything in our lives change; there’s a lot of adjusting that’s happening all at once. Please also pray for Carson that we can bring him home soon and begin to establish our new normal.
Sunday, May 16, 2010
Carson’s will have three surgeries in Dallas, one when he is 9 months, one at 12 months, and then one more at 15 months. The first two surgeries (9 mo. and 12 mo.) will be to separate his fingers and toes. The reason that it takes two surgeries is because to separate the fingers and toes, they cannot cut all the way through the tissue connecting them; otherwise it would destroy the blood supply that has grown between them. After each surgery, he will have arm and leg casts that will need to be on for 2-3 weeks.
The last one (15 mo.) will be to separate the sutures on his skull (cranial vault surgery). Dr. Fearon said that he will wait as long as safely possible to do the skull surgery. This is because it will reduce the number of skull procedures required and reduces the need for a blood transfusion. He said that over Carson’s lifetime, he will need 3-4 skull surgeries to help with the intracranial pressure. He will have to stay in Dallas for a few days following this surgery.
During one of these three surgeries (I forgot which one) he will also have his cleft palette repaired and get tubes put into his ears (both of these are very common issues for Apert). Dr. Fearon said he does this to reduce the number of surgeries that children with Apert require. Fewer surgeries are good.
Sometime in the range of 5-7 years of age, Carson will need another cranial vault surgery. Then at 8-9, they will do the mid-face advancement to pull his cheekbones forward. He will also likely need an eye surgery to add an eye muscle that is missing (this is also common with Apert). Dr. Fearon said that he would not perform surgery on Carson’s narrowed nasal passage, but let it open up on its own as he grows. I do wish that these were the only surgeries that he will need. There could be a few more that come up as time goes on.
I was very pleased with my phone call with Dr. Fearon. He was patient to answer my questions and really showed me that he knows how to help Apert kids. Over his career, he’s handled 120 cases of Apert children. Considering that most clinics see far less in a lifetime, we’re very happy to be working with him.
Well I’m sure this generates a lot of questions (it does for me). If you want to talk, you can email us or call us. If you want, you can read the postings on the Dallas Craniofacial Center’s website that specifically deal with Apert. This has a lot more info on what I was talking about above. Click Here or copy and paste this in to you address bar. http://www.thecraniofacialcenter.org/apert.html
Friday, May 14, 2010
We did send Dr. Fearon the pictures of Carson’s head, hands, and feet. Here’s what he had to say, “Although looking at pictures is not the same as performing a physical examination, it is my impression that Carson appears to have a more favorable skull configuration, and also has a Type I hand. Both are good.” So we are very happy about that. It’s nice to have some good news in the midst of all of this craziness.
The occupational therapist came by yesterday and spoke with Heather about Carson’s progress on bottle feeding. It’s not going as well as we hoped. She said that with the combination of the anomalies in his mouth (i.e. cleft palette, tongue set back farther in the mouth) that he is not being able to coordinate enough to bottle feed. She said that the pediatric surgeons are going to come by on the 18th to review Carson’s healing progress and determine when they can put in the G-tube. We’re expecting it would be around three weeks from today. Everyone that we’ve spoken too said that the tube isn’t as bad as what we think. It’s one more tube, but if it means we can take him home sooner, then that’s not a bad thing.
Carson’s been alternating from the ventilator to the trach mask. They have tried him off the vent completely, but his lungs still aren’t inflating deep enough. So they have been alternating him with his mask just to help him develop the strength to breathe deeper. We think that he’ll grow strong enough to do this soon.
We’ve been exploring options for getting ourselves to Texas since it looks like we’ll be going there within the next six months. We were told by our insurance that they don’t cover the cost for transportation for medical care (it was worth a try). They also told us that if Carson requires oxygen, that he probably won’t be able to fly commercially. We weren’t expecting that. So we’re hoping that he’ll be off oxygen before we fly or that we can find a way to drive down to Texas. I suppose that tonight’s phone call from Dr. Fearon will answer part of that question.
Carson’s been able to wear some clothes now. It’s kind of nice to see him dressed and not naked. Heather has some good pictures of him that I was going to include with the post, but everyone will have to wait to see those (I’m at work writing this). That’s all I have for now. I’m sure I’ve forgotten a bunch of things that have happened, but I’ll include those with the next post. I should have spoken with Dr. Fearon by that time so there will be lots to share.
Sunday, May 9, 2010
Saturday, May 8, 2010
Carson is one month old today! We can’t believe that a month has gone by already. Looking back, Carson’s been through a lot in a short time span. And we’ve seen so many people gather around us to support us and take care of us. We are overwhelmed each day by the generosity and love that has been poured out on our family. We are nervous and excited as we look forward to the months ahead, but we are confident that God has a plan for everything, especially Carson. So we’re willing to wait and see what happens!
On Friday we found out that Carson was put back on his ventilator. He has been having spells where his oxygen saturations have dropped low which caused his heart rate to drop. They determined that he’s not breathing deep enough. So they are using the ventilator to inflate his lungs more to help him breathe deeper. They think that one of two things is causing this. First, he is eating more and also has all of his hernia put back inside of him, so there may be less room for his lungs to expand. Or there is the possibility of him having an infection. They did blood work yesterday and found that his premature white blood cell count is up, which could indicate an infection, but the blood work today looks good so they’re not going to do anything extra. They took a chest x-ray this morning and decided that he’s doing better and lowered the ventilator to not inflate his lungs as much. We were a little bummed at first, but he is breathing better now and we’re hoping that they try and take him off of the vent in a day or so.
Other than that, Carson is doing really well. Avery got a chance to go in and see him again today. He always perks up when he hears Avery’s voice (if you heard Avery’s voice, you’d perk up too!). She always tells us that he has an owie on his belly, that there’s a doctor, and that he’s “all better.” She looks forward to seeing him all week and every time she gets into her play car, she says she’s going to go see baby Carson at the hospital. We are so glad that they lifted the ban on siblings being in the NICU. We are happy that she can share in Carson’s life.
We’ve taken a bunch of pictures of Carson that we are going to be emailing to the doctor that we’ve met in Texas. We are excited that we are going to be able to have a plan and some milestones get set in place for Carson. We’ll be having a phone consultation with him next week about what surgery needs to happen first.
I am so tired and I can’t think how to wrap this up. So I’m going to bed and hopefully this all makes sense.
Steve and Heather
Wednesday, May 5, 2010
We’ve been talking to the doctors again about timeframes for going home. They said that they would really like to see him feed from a bottle before going home. If he can’t figure out how to suck, then they said the alternative is a g-tube, a feeding tube through his belly and into his stomach. If this is the route that he goes, he will have to stay in the hospital for at least 4 more weeks. The doctors said that they would not want to reopen his abdomen so soon after just closing it from the omphalocele hernia. So we are praying that he’ll be able to feed from a bottle and hopefully move up his homecoming!
A week ago we mentioned that Carson might have an inguinal hernia. Well it’s been confirmed that it is an inguinal hernia. No one is very concerned about it right now since it’s large and is not constricting any of his intestine. They said that if they have to do a surgery for the g-tube that they will likely repair the hernia at the same time. Our poor little guy is going to have a lot of scars.
Heather and I have been looking toward the future and trying to make the necessary steps related to Carson’s care and treatment. We decided that we don’t want just anyone to be operating on Carson’s head, face, and hands. There are some very skilled doctors out of state that have experience with helping kids with Apert. One doctor that we are looking into is Dr. Fearon in Dallas, TX. He has pioneered some of the treatments and methods for surgeries of kids with Apert. I emailed him last night and he personally responded to me this morning. I was very impressed by his prompt response and his immediate concern for Carson. We are going to be emailing him pictures of Carson and then talking over the phone about the next steps we’ll need to make for Carson’s treatment. If you want to read more about the Dallas Craniofacial Center, click here.
My brother Michael gave us a great idea of a way to donate money for Carson’s care and travel expenses. He said that you can use Paypal to give money as a gift. If you have a paypal account, you can login and go to send money. For the email address to send it to, use stevesanders8 AT hotmail DOT com. (I wrote it this way so I don’t get spammed, but you know what I really mean). After you put in the dollar amount you’d like to give, you can select the personal tab below and mark that you are sending the money as a gift. When you choose this option, paypal will not charge a fee for sending the money. This is a great option for people that are out of state that want to give.
Monday, May 3, 2010
If you didn’t catch it in the last paragraph, I did actually say “When Heather was HOLDING Carson!” That’s right; we finally got to hold Carson on Saturday. It was so nice to have him out of his bed and into our arms. He seemed to enjoy it. He slept through the holding on Saturday, but on Sunday he was completely awake and alert. For me, this was the first time that I’ve seen him with his eyes totally open and looking around. It’s a little bit of a chore to get him out of bed and into our arms with all of the equipment still hooked up to him. But we don’t mind! It’s really helped us bond with him more since we had a lot less physical touch over the last 3 weeks.
While I was holding Carson Heather noticed that he was rooting at his oxygen mask that covers his trachea tube. She gave me the pacifier and he was able to take it and actually sucked on it a little. We’re pretty excited for that because the sooner he can take a bottle, the sooner we can take him home. No estimates of time in that area, but we hope it’s soon. He’s been eating really well, and is almost up to one ounce. Carson also is getting a room change. We’re not sure why. The nurse told us, but both Heather and I didn’t understand. They said it was only temporary and that they would try to get him good spot when they move him back. As for now, he’s in an isolation room by himself. I would guess that he wouldn’t mind much since in his other room all of the baby girls were noisy. I’d want a break too!
I don’t know if I’ve mentioned it in our previous posts but we are so blessed to have our live in nanny, Jorrey Stewart here to help us while Carson is in the hospital. She’s been a major help in this whole adventure. Heather is able to freely go to the hospital whenever she needs to because Jorrey is there to watch Avery at our house. And on top of that, she has been making us some dinners, doing our laundry, washing dishes and more! We are so happy to have her here and we don’t know how we are going to do it once she leaves!
Lastly, we finally got an account set up at America First Credit Union for Carson. We’ve been so busy it’s been really hard to get that done. If you’d like to donate money towards his care, you can do it one of two ways. If you’re here in Utah, you can just go to America First and make a deposit into his account. The number is 25737164 or you can have them look up the account for Carson Sanders. If you’re out of state, you could mail any donation to us, or if you wanted to remain anonymous, you could mail a check directly to one of the branches (I think). Unless someone knows of something better that we could set up to make it easier, this was our best shot.
As hard as it is to ask this, we would appreciate any giving that you’re able to do. We are going to have a significant financial need in the next year for doctor visits and possible travel to a craniofacial surgical center out of state. Our insurance will cover a lot, but we have some co-pays that don’t count towards our out of pocket maximums. And we are not exactly in the best place financially right now. If you would like to know any of the costs that we anticipate, please feel free to call me or email me about it. I want to be open and honest will you all about any giving that you make and let you know what it is going towards. It’s humbling to have to ask, but we really do need some help.
Here are some pictures of this weekend.
Steve and Heather
Friday, April 30, 2010
The doctors told Heather yesterday that Carson likely has an inguinal hernia. I would suggest not Googling that unless you’re prepared to see some boy parts. It’s an opening in the abdominal cavity into the scrotum. Inguinal hernias are very common in my family. I had one and had it repaired when I was a senior in high school. The doctors said that they will fix it at a later date since it’s not life threatening. It will be one more surgery where they will have to make an incision similar to how a c-section is, but usually only on one side of the abdomen. Really, take my word, don’t Google it.
Carson is having a lot of his medications reduced. He’s now only on cortisone and fentanyl for pain, and is still getting his “mountain dew” mix of nutrients. On Wednesday, one of his pic lines to his heart came out on accident. It’s nothing serious; they just needed to rerun the pic line through his leg instead of his arm. They also have removed his arterial splice that was in his foot. He didn’t seem to enjoy having that pulled out. But for some reason, he slept right through having his pic line put back in.
The occupational therapist is coming by today to see if Carson has the ability to bottle feed. It is really important that he be able to do this because the alternative is the stomach tube (G-tube) that we talked about in earlier posts. So we’re praying that he can figure out how to latch on and how to swallow properly with his new trachea tube. From what we’ve been reading, most kids with Apert’s are able to latch on and eat just as long as they learn to coordinate their breathing and swallowing. Carson shouldn’t have a problem with this since he has the trachea tube.
Lastly, today should be his first trachea tube change. Everything should be healed up by now. This is good news because we were told that once they change that out that we will likely get to hold him. So maybe today; we’re hoping!
Thank you for your prayers,
Steve and Heather
Tuesday, April 27, 2010
The neonatologist told Heather that a lot of things will be happening this week. First, they are planning to take out the clear tube that runs to his stomach in a few days. They said that they don’t have a need to be suctioning the secretions anymore. Along with that, they are planning to start tube feeding Carson as early as tomorrow! This will be a good indicator of how long it will be before we get to take Carson home. We are so excited for this! Please pray that he tolerates the milk and eats like a big boy. The doctor also let us know that as soon as Carson’s tracheotomy is healed, that Heather and I will be able to hold him. They expect that we will be able to do this within a week and we can’t wait!
And now for some odds and ends. We all prayed for poop, and well, he going to have one, but not by choice. The nurses are going to give him a suppository to get things moving since he hasn’t had a poop in a few days. So please keep praying that everything would function in his bowel. Heather said she also noticed that Carson has stopped drooling. If anyone has noticed, it was giving him a bad rash on his chin, but it looks like the drooling is gone and the nurses are going to treat that with a cream. And to mark off one more tube from our tube list, he’s likely going to get the arterial splice IV line taken out of his foot. That has been in there for doing blood gasses and just in case the doctors needed to pump some meds in without having to stick him. They said they don’t have a need for that anymore so bye bye!
We are so glad to have a bunch of good news in one day. Carson is such a fighter and is doing so well! Thank you for everyone’s prayers and support. We couldn’t go through this without you all!
Steve and Heather
Monday, April 26, 2010
Carson is having his 4th surgery today, to have his tracheotomy done. The doctors said the surgery will last about one or two hours. After the surgery, Carson will still be on the ventilator for a few days as they transition him to breathing through the trachea tube. We are excited and sad for this transition; excited because that means less tubes in his face, and sad because the trachea tube sounds like it will be a lot of work to take care of.
We talked with our first respiratory therapist on Sunday and just got a brief overview of some of the event that will be coming up in relation to the trachea tube. First is a set of 5 two hour classes that Heather and I will take to learn everything about caring for Carson and his tube. We will also get to spend a 12 hour period and a 24 hour period at the hospital to show the doctors that we can care for Carson, and to give us the confidence that we need to take him home. It all sounds a little overwhelming right now, but I’m sure we’ll feel better after the training.
One thing that we are praying for right now is for our cats. We may have to find new homes for them because of the trachea tube. Infection and blockage are big risks with the tube and cat hair poses a plugging hazard. We haven’t asked the therapist about it yet, but we are thinking it won’t be in the kitties favor.
We are also praying for poop. Carson needs to begin to have some poop before they can give him a feeding tube. He has a tube to his stomach already that drains the secretions for it. They will also have to wait until that tube begins to run clear before they try to feed him. So please pray that he poops and starts making some clear secretions!
My mom is going home tomorrow. She’s been here for a week and has been a huge help for us. She was able to drive Heather to the hospital every day. She cleaned parts of our house that we didn’t even know that we had. She also got to spend some good time with Avery (Avery calls her Ma-Kitty for Grandma Kitty. Cute.). We’ll miss her, but she’ll be back out this fall for vacation!
That’s all for now. We want to say thanks again for everyone that has been helping us with dinners and yard work. It is so nice to come home and have things taken care of! Less stress is good.
Steve and Heather
Tuesday, April 20, 2010
Carson is doing good. Here's the most recent update that I just wrote. You can post it if you have time.
Carson had his final hernia surgery on Monday to close the hole in his abdomen. Everything went really well and the doctors were able to complete the closure. We’re so glad that the hernia is taken care of and is behind us now. It’s nice to have something complete. The doctors will be monitoring his bowel function and will likely try to give him some food in the next three weeks. That all depends on how soon everything returns to normal function.
Carson has been put back onto some sedation to help with his pain and irritation from surgery. We wish he could be past that since he’s often sleeping when we visit him. We’ve had a few days that we’ve been able to see him open his eyes. Heather is betting that they will be blue, but I’m thinking that they will be brown.
We were able to meet again with the ENT doctor on Monday. He explained to us the whole process of having a tracheotomy. It sometimes sounds a little overwhelming, but I think we’ll make it through it. He dispelled some of the myths that were hanging around about having a trachea tube. First, he does not need to have a tube into his stomach to feed him; the doctor said that he should be able to swallow, with some possible difficulty. We also learned that he will be able to talk. It depends on his mental ability and if he can figure out how to use a trachea tube with a talking button on it (he’d have to push the button when he wanted to talk). There are a lot of other things that we have to learn about taking care of a child with a trachea tube, so we are going to be meeting with a respiratory therapist soon to get educated. In light of everything that we’ve learned, we are moving ahead with the trachea tube and he has a tentative surgery date of Monday the 26th to have that put in.
My mom (Steve’s mom) flew in last night from Michigan. She’s her to help take care of Heather and drive her around as she heals from her C-section. She told me that she was going to pamper Heather, which she obviously deserves. So, I’m waiting to see who is flying in to pamper me. Any volunteers?
We do appreciate all of the support that we’ve been receiving from everyone. We do feel very blessed to have such great friends and family. Thanks again to everyone who has been praying for us, helping with food, taking care of my jungle yard and so on. It’s a big relief to us.
Saturday, April 17, 2010
First up, Carson had his second surgery on Thursday to close his hernia. The doctors we able to close it most of the way, but not all the way. They are going to do one more surgery next week sometime to finish that up. What a relief to have one thing behind us and be moving forward.
While writing this update I got a phone call from the ENT specialist to talk about the tracheotomy that will need to be done on Carson because of his nasal airway being closed. I asked the doctor why they couldn’t do surgery and here’s what he said. He said that on a skull there are two openings in the bone shaped like triangles, and that about 1 cm behind that is where Carson’s airway is closed off. He said there are a lot of important structures there, like the brain and eyes that are very close to where they would need to operate. He said that he would not risk damaging those to free up his airway. In a few more years, there may be more room for them to operate on his nose and open it up. Also, in a few more years Carson will be less dependent on breathing through his nose.
We are very nervous about having the trache tube because it carries some big risks and limitations on the way he lives. With it, he couldn’t be left with anyone who didn’t know how to take care of it (clearing it, suctioning it, putting it back in if it comes out). He’s also more prone to infection because the air he breathes is not filtered by the nose hairs. There is also a 1% mortality rate associated with it because of how delicate it is. The doc told us that we’d likely need to have in home care for him from a respiratory therapist to watch him while he sleeps at night, or to have equipment that monitors him sleeping. We’re going to have some big changes ahead with this, but we’re trusting God that he knew what he was doing when he made Carson.
I was able to see the x-rays of Carson’s hands and feet. The nurse wasn’t able to tell me exactly what was going on because she didn’t know. She said that a plastic surgeon would come by sometime and let us know what they showed. From what I saw, all of his bones in his toes are completely separate! That means that we could have them separated someday for cosmetic purposes. As for his hands I could tell that some of his fingers are separate, but I couldn’t tell what is going on with his ring finger and middle finger. They are the ones that are most affected by the fusion. We’ll have to wait and see what the doc says.
Carson doesn’t have anything major happening this weekend, which is good because he needs a rest. They haven’t had to sedate him much lately so we’ve been able to see his beautiful eyes open and looking around. One thing to pray for is his muscle control on his eyes. Apert’s Syndrome causes weak eye muscles. I’ve seen one of his eyes react very slow and not in sync to his other eye. It’s scary because we just want him to have as normal of a life as possible, and this could be another big setback. We’re going to talk with the docs about it to see if there’s some therapy that can be done.
On the home side of things, Jorrey came on Wednesday to stay with us for a while and take care of Avery. What a huge blessing. When I lived at the camp in Montana she was only 8 years old, and now she’s almost 16! Where has the time gone? She is very mature for her age and helps out without even being asked. It is such a relief to have her here.
Heather’s mom left on Friday for Illinois. She was a big help in taking care of Avery while we were prisoners at the hospital. We are very thankful that she was here and took care of everything for us. It’s sad to have family leave, but we’ve got amazing support here from our church family. My mom (Steve’s mom) is coming on Monday to stay for a week. She’s going to be a big help for Heather because she still doesn’t feel good enough to drive to the hospital. We’re so happy to have all of the support that we’ve had.
One last thing in my giant book of updates. A nurse case manager from our insurance company called and said that Carson’s condition was flagged by the insurance company. They assigned her to us and she will be our advocate to the insurance company to get us coverage on things and answer all of our questions. She mentioned that because craniofacial reconstructive surgery is so specialized, that there are only a few places in the US that actually do those types of surgeries. Even though they are not in our insurance network, she said that insurance company understands that these surgeries need to be done and that they would be willing to cover the costs for them. We are very excited to know that our insurance company is even willing to work with us and help us.
A big thank you again for everyone who worked on and paid for our bedroom in the basement. It looks awesome and is more than I could have done on my own. Also thank you to those who have been doing my yard work and bringing us dinner. You have taken huge burdens off of us and allow us to focus on little Carson. We are so blessed to have such good friends! We love you guys.
Steve, Heather, Avery, and Carson
Wednesday, April 14, 2010
I received this e-mail from Steve this morning!! I just copied and paste :)
Yesterday was another busy day at the hospital. When we got there we found out that Carson got a new room! This is great because in his old room he was right by a door and was in the middle of a main traffic way for people going from room to room. He’s now in a smaller room with 5 beds and his is right next to the window. And all the other beds have little baby girls in them (I told Carson hands off). They are a little nosier than he is; granted he can’t make noise with his intubation.
We were able to meet with the geneticist today and discuss Carson’s Apert’s Syndrome. She answered a lot of our questions that we had. She said that given Carson’s condition, he should be expected to live a normal length life. She told us that there was a probability that as he grows up that more bones in his body will fuse, mainly those in his hands, feet, skull, and neck. It will be something that we will have to wait and see. She said that he will be short compared to other kids his age. She said that answers to other developmental issues like cognitive ability and ability to use fingers would come with time.
We are still waiting to meet with the ENT specialist to discuss why they cannot do surgery on Carson’s Nasal airway. We are hesitant to just go with a tracheotomy since it would likely further delay his development. They have been a little resistant in wanting to meet with us in person. Please pray that they will just meet with us so we can make a decision and move on.
Carson had his hands and feet X-rayed to see if the bones are fused together. We will be meeting with the plastic surgeons once they get the results back to determine how to proceed. We also heard that we will be meeting with the cranial facial team to access Carson’s skull. There are many surgeries that he will likely need to correct his skull shape and correctly set the bones in his face. Our poor little guy is going to have a lot of surgeries to go through in the future.
Jorrey is coming down from Montana today and should be here at 3:00. We are so excited to have her come. She will be a big help for Heather so she can go and visit Carson in the hospital. Heather’s mom leaves this Friday, but my mom (Steve’s mom) is coming next week Monday to help out with driving Heather to the hospital while she is healing from her C-section. We feel very blessed to see how God is organizing all of this help for us.
Tuesday, April 13, 2010
Monday, April 12, 2010
Carson had his surgery today and things went well. The doctors worked on his hernia and scoped his nose and throat during this surgery. The hernia surgery went really well. They were able to place most of the liver and part of the intestines back into the abdominal cavity. The parts that couldn’t fit were covered with a mesh patch that was attached to his abdominal muscle. So, the yellow mesh that surrounded his hernia is gone and it’s no longer suspended to his bed! The doctors said that they hope to close the abdomen with one or two more surgeries! This is amazing! We thought that this would be the thing that kept him in the hospital the longest so it could mean a shorter stay! The nurse even said that we might get to hold him in a week!
The ENT (Ear, Nose and Throat) specialist said that he thinks that Carson’s nose does have choanal atresia, a complete blockage of the nasal cavity to the throat. Earlier, we thought that this wasn’t the case when the CT scan came back as saying there was no blockage. But the ENT doctor says that he disagrees with that. He ran a 2mm scope into Carson’s nose and found no way to get through into the throat. The doctor offered only one real solution to this problem, which is a tracheotomy. It would have to stay in place for 2-3 years. Heather said that she can’t remember if the doctor talked about why they cannot do surgery, or why it would have to stay in for so long. We have to meet with a respiratory therapist and the ENT doctor tomorrow to discuss everything again. The possible problems with the tracheotomy would be the fact that Carson may not be able to talk while that is in place.
Carson is doing really well though even despite these issues. He went through the surgery great and continues to improve while in the NICU. We’ll get some update photos of him tomorrow so everyone can see him with his new, reduced hernia; and hopefully a picture of his cool glasses he wears for his jaundice treatments.
We also want to thank everyone who has been helping and praying for our family during this time. You guys are a huge blessing to us and have made this bearable. We love you guys!
Steve and Heather
Sunday, April 11, 2010
Don't forget that if you would like to help in any way, to check out the care calendar! The information is on the previous blog post :) Thank you!
I will post pictures of Baby Carson tomorrow!! My internet connection is being very slow today and I can't get them uploaded tonight!!! :(
Friday, April 9, 2010
First and foremost, Dr. Burne met with the leading geneticists at the hospital and they have diagnosed Carson with Apert’s Syndrome. It is a craniofacial and limb genetic disorder. Carson’s face, head, and hands are displaying the characteristics of the syndrome (protruding forehead, fused cranial sutures, fused fingers and toes). The geneticist is going to meet with Steve and Heather soon to talk about the long term implications of this diagnosis. They have also sent away genetic material to test to see if there are any other anomalies that are present.
They did an echocardiogram on Carson’s heart and only found one small anomaly that they are not worried about. They said it should resolve itself. They did an ultrasound of his head and his kidneys to check for other defects. They sent those scans to the radiologist and said they will get back to Steve and Heather.
Carson has some sort of defect in his airway that initially prevented the doctors from intubation; running a tube down into his lungs to help him breathe. They will perform a scope of his throat on Monday when they work on the omphalocele, to see what needs to be done to fix the blockage. Carson also has choanal atresia, a complete blockage of his nasal airway. They will be looking at that during the surgery to see how to fix it later on.
Carson’s omphalocele is actually doing quite well. The doctor doesn’t think that they can repair it with one surgery, but they have high hopes of it getting repaired in a few surgeries. It already looks smaller and around 10% of it has returned to his abdomen.
The good news is that he is doing really well despite all that is going on with him. His oxygen levels are good, his heart beat and blood pressure are good, and they are happy with his lung function. He is breathing on his own, but sometimes gets assistance from the ventilator tube.
Keep Praying :)
PS If you are interested in helping, please go to http://www.carecalendar.org/
CALENDAR ID : 37023
SECURITY CODE : 1183
Thursday, April 8, 2010
Each day she is getting her amniotic fluid checked. Yesterday it was at 24 and today it jumped to 31. The normal number is between 8-24. So it is starting to increase again. They told her if it continues to go up more, then they will either need to drain the fluid again, or they will do a c-section.
They are still planning on scheduling her C-Section once she is at 36 weeks. She will be 33 weeks tomorrow!! So let's all pray she can hold off for 3 more weeks and that fluid will stay where it's at!!
Thank you all!!
The doctor also told her that they would induce her at 36 weeks. This way she is not at the hospital until full term!! Things are looking on the upside now!! :) Thanks for your prayers!!
Heather's mom (Jill) and brother made it in yesterday afternoon!!! I will update more as soon as I hear something!!
Tuesday, April 6, 2010
Also, Heather's mom is flying into town tomorrow!!! Avery has been having a tough time being away from home, mommy and daddy!! So hopefully with grandma here, she will do much better!! She will be able to stay at home in her own bed and see daddy when he comes home in the evenings. Her grandma will also be able to take her to the hospital more often to see mommy!! So please keep Avery in your prayers, as well as safe travel for Heather's mom!!
Thank you all!!
Monday, April 5, 2010
This morning she had an ultra sound and there is still fluid in her lungs and her amniotic fluid has increased slightly. She is feeling much better however and is off the oxygen. She was also able to shower last night so she is enjoying being clean :)
She is switching rooms tonight from labor and delivery floor to a more general floor. In this room, she will not be hooked up to monitors 24/7, which means more comfortable and better sleep hopefully! They will still monitor her and the baby periodically, just not constant. Her contractions have slowed down and as long as they continue to go the way they are, they will not need to drain her amniotic fluid. If her contractions increase, there is a prescription that she can take, however, it has caused her blood pressure to do crazy things, so if that happens again, then they will need to drain the fluid. But they will first try her on half the dose. They want to try to prevent draining the fluid at all costs.
They are planning on doing an echo cardiogram, however, that must be scheduled through Children's Primary, so it may be a while before they hear anything about that.
Steve is back to working and tonight he is going home to sleep in his own bed and have some time to himself!!
Thank you all for your prayers and support! Again, if you have any questions or would like to help out, please e-mail email@example.com.
Sunday, April 4, 2010
Thursday morning, Heather and Steve dropped Avery off at Tory's house while they went to the U (University hospital), where they were to meet with the surgeons and learn more about what the plans were for Carson's arrival and his surgery following his birth. However, Heather was unexpectedly admitted because she was 2cm dilated and 80% effaced. They put her on magnesium to stop her contractions. After some complications with the magnesium, she has been taken off of it today. Tomorrow the doctors will discuss what needs to happen. They may need to drain some of the amniotic fluid. They are hoping to keep Carson in Heather for at least 2 more weeks. Heather will be in the hospital during this time on strict bed rest.
They have also been told that Carson may have Carpenter's Syndrome. Carpenter's Syndrome is an extremely rare genetic disorder caused by a mutation on the 6th chromosome. There is approximately only 300 known cases in the US. Only one in one million babies have this syndrome. Roughly half of the babies born with Carpenter Syndrome have some type of heart defect, and seventy five percent of individuals with this disease will experience some degree of development delay due to mild mental retardation. They will know more information as to if he does have this and how severe once he is born.
I will update you as I talk to Steve and Heather!! :) Thanks for all your prayers, encouragement, and concerns for the Sanders! They truly appreciate it!
So, please use this site to stay updated and if you have any questions or you would like to help out, please e-mail firstname.lastname@example.org. If you would like to be on an e-mail list, please e-mail me at this address and I will add you to the update list. This will help decrease the call volume for the Sanders!! Thank you for helping to make this situation as least stressful as possible for the Sanders!! You can leave comments on this blog that they can read!