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!