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.

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.

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.

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.

Take a Deep Breath

Carson had a rough weekend. We were told on Sunday that he was having his bouts with his oxygen level in his blood dropping again. The doctors fear that he has an infection; again. They ran more tests and saw that his red blood cell count was low so they think that may have had something to do with his oxygen level. They put him on another round of antibiotics and will treat him for 7 days this time to make sure that if there is an infection that they get it taken care of. He's still on the ventilator and it's been helping him take deeper breaths. They've not been cycling him with the trach mask since he's been having so much trouble with oxygenation. We’ve read a lot about Apert Syndrome and know that a lot of these children have problems with Apnea so we think that it may not be an infection (granted we aren’t doctors).

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.

The Doctor is In

Here’s the latest scoop on Carson’s surgeries for the future. These are obviously all rough dates and some of them may not have an explanation as why they have to happen then. (I really didn’t think to ask). This was all from my phone call with Dr. Fearon in Dallas.

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

We're Still Here

I’ve been trying to hold off on writing an update until we were able to speak with the doctor in Dallas, but I think that I might forget everything that is going on right now if I don’t write one. We’re expecting to hear from Dr. Fearon tonight and get the surgery plan laid out for Carson for the upcoming year. I’m very optimistic about our phone call and can’t wait to be talking to someone who doesn’t need to be educated by me about Apert Syndrome. Heather was talking to me last night about how we are always having to educate the doctors and nurses who work with Carson about his syndrome. I guess it comes with the territory and we’re going to need to get used to that as time goes on.

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.

In the Middle of the Night

We started our mother's day with a phone call from the NICU at 5:40 am saying that Carson was throwing up and possibly sick. This was the first time that the hospital has ever called us in the middle of the night so you can imagine that we were quite alarmed. It turns out that Carson had a rough night last night. He only slept for two hours and threw up all night. The doctors had been doing blood tests often and said that everything had come back normal. They asked us for approval to do a septic workup (that included pulling some spinal fluid) to see if there was any sign of infection, but there was none, thankfully! So no one is really sure what was going on. Heather thinks that it is just because they have been feeding him more and that with his liver and intestines back inside, that everything inside of him is very tight. So he is being kept on antibiotics and they doctors will try to feed him again tomorrow. All is good though. We were able to hold him today and grab some shots for mother's day. Enjoy.

One Month Old

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.

Love,
Steve and Heather

Only One Tube Left!

Believe it or not, we’re down to one tube. That’s right; Carson has had all but one tube taken out of him. They took out his picc line today so that leaves him with his feeding tube. He’s been eating very well and he eats about one ounce per feeding. He has been having some trouble with reflux and Heather asked them to put him on Prevacid or Zantac. We’re hoping this helps because when he has reflux his oxygen sats drop very low. With no tubes, this means that he can wear clothes!

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.

Finally in Our Arms

It was a really good weekend here in Utah. Some exciting things happened with Carson and we are happy to be able to share them with you all. On Saturday, the NICU lifted it’s 1.5 year ban on siblings being able to come into the NICU to visit. Heather heard about this the day before and planned accordingly. We brought Avery down with us on Saturday to see Carson for the first time. She was so excited about this. When we lifted her up over the side of his bed you could just see how much she loved him on her face. She kept saying “Baby Carson” and “Owie belly,” because of his incision on his belly. When Heather was holding Carson, Avery was blowing him kisses. I think she is really excited to be a big sister. And Carson looked pretty excited too. He spent a lot of time just looking at her face with his eyes wide open.

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.

Love,
Steve and Heather