It all started on September 8, 2010. I was induced at 10 a.m. and at 6:29 p.m. my baby boy, to be named Carson Matthew, was born at Methodist Women’s Hospital in Omaha, NE. He was born at 9 pounds 15 ounces, which I thought was totally and completely crazy, because I am pretty small myself, so having an almost 10 pound baby was shocking.
The next day, our family doctor, Dr. William Weeks, came up to the hospital to check on both Carson and myself to see how we were doing. He did his well exam on Carson and noticed that he did not have a soft spot on the top of his head and ordered a CAT scan right away. The results revealed that Carson has Sutural Metopic Craniosynostosis. When I heard that, I immediately wanted to know more, and why this happened to ‘my’ son.
He immediately gave me a surgeon’s name and phone number, in which I called that same day, even though I was still in the hospital, to set up an appointment with a Pediatric Neurosurgeon, Dr. Mark Puccioni. The beginning of October 2010, the first two weeks was meeting with both surgeons and seeing what they had to say about Carson and the exam they both performed.
Dr. Puccioni told me that Carson needed surgery to correct his head. Craniosynostosis was to blame for my Carson’s forehead coming to a point. He told me in detail what the surgery would entail and then gave me a phone number a Plastic Surgeon, Dr. Jason Miller, in which he has worked with many times on cases like these. The next week, I got an appointment with Dr. Miller and he looked Carson’s head and felt it and took his pictures, and told us that if Carson did not receive this surgery, he would be an increased risk of developing developmental problems. I was speechless scared of my son’s future. Would he live a normal life? or would he end up with developmental problems for the rest of his life? He then sent us off, waiting for a phone call of a surgery date.
The waiting for a phone call seemed like forever. Waiting and waiting, and some more waiting. All these days going by and no phone call. So one day I called the Dr. Miller’s office and wanted to know what was going on. The lady I talked to on the phone, name Colleen, was so incredibly nice to me and truly sounded sincere with my concerns. She told me that they had sent out the information and the pictures to the insurance company on November 1, 2010. Why they waited to send out Carson’s information to insurance company until November is still a mystery to me, because we went to Dr. Miller’s office the second week in October.
Every week to two weeks, I kept calling Dr. Miller’s office for updates on what was going on. Colleen told me that all we were waiting for was for the insurance company to approve the surgery. With a surgery like this, I wouldn’t think it would take that long to get a surgery approved, but boy was I wrong. After another week or two, I called again for an update from the surgeon’s office and Colleen said she had no good news for me and told me that I could try to call the insurance company as well, and that we would both bug them until it was approved.
I started calling the insurance company every couple of days hoping for new information. They finally told me that they would send Carson’s case through to escalation, or for Carson’s case to be rushed for approval. In the meantime I still kept calling the insurance company for updates. Still nothing. When I called again, I talked to somebody that actually didn’t mind talking to me. They told me that the case really had to be reviewed because they wanted to make sure that the surgery was not just for cosmetic purposes. All that was going through my heard at that moment was ‘Are you serious?’. The plastic surgeons office sent a copy of the pictures of Carson’s head, showing them exactly what needed to be done. It took a little over two months for the insurance company to approve his surgery.
So a day or two later, I FINALLY got the call of a surgery date. They told me February 16, 2011 at 1 p.m. and to get a H&P (Health and Physical), to get cleared for surgery. So I called and set up the appointment with our family doctor, Dr. Weeks. I then called the CARES Unit and Children’s Hospital to see what I needed to do regarding Carson getting blood work for surgery. They told me to bring Carson in 7-10 days before the scheduled surgery date if we thought he was sick, or if he was not sick, to bring him in the day before the scheduled surgery for his blood work. They said that if he was brought in the day before the surgery for blood work, then they wouldn’t have to do more blood work the day of the surgery.
Well, Carson showed no signs whatsoever of being sick and didn’t act sick so we took him in the day before his scheduled surgery for his blood work. I was SO proud of him because he didn’t even cry getting poked in the arm. He was a trooper. After they drew is blood, we headed for home.
A couple hours later, I received a phone call from the plastic surgeon’s office with some bad news. They immediately told me that they cancelled Carson’s surgery. I couldn’t believe what I was hearing and started crying because I was so worried of it getting delayed and delayed again, and Carson’s chance at a normal life, up in smoke. I probed further as to why it was cancelled, and the lady on the phone told me that it was because his white blood cell count was too low for comfort to proceed with the surgery.
The plastic surgeon did tell me that if I had any concerns or felt that I needed to see him again before surgery, even if was a couple days before surgery, just to call and they would get us in. So I called and set up an appointment on a Friday morning, and we got in on the next Monday. I told the plastic surgeon that because Carson’s surgery was cancelled, I was more worried than ever that Carson would end up with developmental problems.
After I got off the phone with plastic surgeon’s office, I immediately called our family doctor’s office to see what I needed to do next. They told me to come in the next day (surgery day), and they wanted to see Carson and see if they could figure out as why his white blood cell count would be low. They told me to bring in a copy of his blood results. So I called the plastic surgeon’s office and said that I needed a copy of his blood results for our family doctor to review also. So the lady I spoke to, scanned and e-mailed me a copy of the results to print out and take with me.
The next day (February 16), we arrived at our family doctor’s office, to see PAC, Christine Hunter, since Dr. Weeks was out of the office that day. She told me some news that was a tad different then what the plastic surgeon’s office told me. She told me that it was not Carson’s white blood cell count that she was concerned about, but his neutrophil levels. Neutrophils are the most common type of white blood cell, and makes up about 60-70% of white blood cells in our bodies. So she told me that if they did the surgery, Carson would be a higher risk of infection and not being able to fight it off. When she told me that, I was instantly relieved that they cancelled his surgery, because I didn’t want any complications whatsoever.
Again, we were back to waiting. And some more waiting for the plastic surgeon’s office to call with another surgery date. I couldn’t help but think that the longer we wait, the more likely Carson has of developing problems. Finally I got the call and it was scheduled for March 24, 2011. It was a relief to have another surgery date, but then again, the nerves set in.
Once again, we had to go to Dr. Weeks, our family doctor, so he could another H&P on Carson. While we are it, we had his six month check-up at the same time, where Carson received his six month shots. Again, we got cleared for surgery and was sent back to Children’s Hospital for more blood work.
A couple hours later, I received a phone call from the plastic surgeon, telling me that Carson’s neutrophil levels have come up, but they were still low. So he gave the Hematologist, Elizabeth Thomson, my information and she contacted me to set up a time to go see her to figure out why Carson’s neutrophil levels were still low. So on March 22, 2011 we got in to see the Dr. Thomson, and she had some more blood work done, and just had a student do a physical exam to make sure his spleen was not enlarged. Then the Dr. Thomson came in and said that Carson more than likely has something called Benin Neutropenia of Childhood, which means Carson’s body is making the neutrophils and his body is storing them, but when they do the blood work, they do not show up. But if Carson were to get an infection, those neutrophils are there to run to the site of infection.
In the meantime, trying to keep my mind off the surgery was the most difficult for me. I just kept thinking that he is so little, even though he is my big boy, and he doesn’t deserve to have to go through all of this. So I just started packing up our apartment little by little, box by box, giving myself something to do, trying to keep my mind busy. I started packing a month early. So I have gotten quite a bit accomplished.
Even though I have been keeping my mind busy, It doesn’t make me tired enough to sleep. I have not slept much in about 8 days, and I have not eaten much in about 8 days. It is really hard to stay strong. I can’t help but cry every time I look at my son.
March 24, 2011
March 24, 2011 is here, and I spent a lot my night sending messages back and forth with another Cranio mother. It was really nice having some really nice mothers to talk to and to receive some positive feedback. We arrived here at Children’s Hospital at 11 a.m. and sat in a little room for a couple hours. right about 1 p.m. the Neurosurgeon, Dr. Puccioni came in and talked to us for a couple minutes and told us that the Plastic Surgeon, Dr. Miller was going to be late because he was at another hospital performing a procedure on someone else.
In the meantime, The operating room transport nurse came to get us, and I carried Carson as far as I could, and I said some words of encouragement to him and gave him lots of kisses and told him that I was not going anywhere.
The waiting room is not the best place where I like to sit. But I will do what I have to do for my son’s best interest. The surgery was supposed to start at 1 p.m., but the plastic surgeon did not arrive to the hospital until 2 p.m.. The liaison finally came out to give us an update at 2:30 p.m. telling us that Carson is stable and all his iv’s are in place and that the surgeons were about to start. So much working on schedule. So it is going to be even longer before I get to see my little trooper, and then again, I don’t even get to hold him.
Patience is a virtue, but waiting patiently for updates regarding my son, is not easy. I want updates when I want updates. It sucks that I can’t get the updates more often then what I am getting, which is every hour.
The doctors finally came out and talked to us. They said everything went great and Carson is looking good. A lot of swelling is to be expected, which I know already and I am prepared for it. I am just so thankful that my son came through is surgery with flying colors. He definitely is my little trooper, and I so can’t wait for him to come home. I am going to be by his side every minute of his stay here.
The surgery took about three hours. We FINALLY got to see him around 6 p.m. and now we are in his PICU (pediatric intensive care unit)room. They say it is going to be a rough night tonight, but I can believe it. THANK YOU LORD!! I am so grateful that there were no complications.
I am so ready to start our NEW life as a family without having to worry about medical concerns.
Our family Doctor, Dr. Weeks, will be in the morning to check on him, and hopefully get a room upstairs sometime in the morning. In the meantime, the nurses come in and check on Carson every two hours, so it is going to be a very long night. Carson does wake up and fuss quite often, seems to be about every two to five minutes. So no sleeping for us tonight, but I am so happy that he calms down to my voice and me holding his hand. I truly couldn’t be more proud of him. He is so strong and a fighter.
So it has been 5 ‘ hours since Carson got out of surgery and he has just downed a two ounce bottle of Pedialyte in nothing flat and was mad that it was gone. My poor baby don’t feel good and he still downs a bottle. I am so grateful that I have such a strong little boy.
March 25, 2011
So it is now 3:15 a.m. on March 25, 2011 and Carson is finally resting pretty well after drinking 6 ounces of pedialyte, and 6 ounces of formula. There is some more bruising developing around his eyes, but I knew that was coming.
Dr. Miller, the plastic surgeon came in this morning and removed his pressure bandage from his head. Dr. Weeks, our family doctor, has also made it in to see how Carson is doing. Carson is such a trooper. We are still waiting for Dr. Puccioni, the pediatric neurosurgeon to come in, but according to the nurses, they said that can take awhile.
Carson now has a lot of swelling and his eyes look purple. His left eye at this point is so swollen that it is the same height as the tip of his nose, and you can barely see his eyelashes. One of the nurses removed an iv from his arm, and I FINALLY got to hold my strong baby boy. I think he liked the cuddle time, as much as I did.
We are getting a normal room and getting out of the PICU sometime today. The floor we will be on is full and some patients need to get discharged before they can send us up. I can’t wait because it is going to be even more quiet, which is good for Carson because at this point, he is still jumping at every little sound and of course that disturbs him.
Early this afternoon, after Carson woke up from a nap, he decided that he did not want the drain tube in his head any longer, so he pulled it out. I kept dabbing the drain hole with gauze, and still am when I see some, but the surgeon came to take a look and said that he was going to take it out sooner or later anyway, and that it didn’t look bad. So that saves Carson from having to go down to surgery again to replace the tube.
We are finally in our room upstairs out of the PICU, and it is kind of nice. It is a lot quieter and we have our own bathroom. I did have to use a blanket to block the draft from hitting him that is coming from the vents by the window. That makes it a little chillier in here.
Both eyes are now swollen shut, but he still wants to stand. That is my little trooper. The surgeon was surprised that he was eating only 5 hours after surgery. Dr. Puccioni also said that Carson’s eyes will more than likely be swollen shut for a couple of days. I hope he can see us again sooner, but he does know voices, and that is awesome. He has been snuggling with mommy more now that the surgeon said it is good for him to be upright to help with the swelling.
Carson is doing a little better sleeping. He took an hour and a half nap, which of course I took advantage of. Now I only wish that my body felt like it has slept. My eyes are so heavy and burn and my vision keeps going fuzzy, but I will do ANYTHING for my sweet baby boy. It seems that it has been about ten days now, since I have had a good night’s sleep. Carson loves sitting up in our lap to take naps. I love that bond just as much as he does. I hope he don’t outgrow that. Ha-Ha.
March 26, 2011
It is 8 a.m. Saturday morning and Carson did pretty well sleeping last night. We both held up upright for a while for him to sleep on his stomach on our chests. He seemed to like that a little a better than his back. Both eyes are still swollen shut, and its hard seeing him prop himself up and try to look around, only his eyes won’t open. That is really hard to see sometimes, because he really tries.
Carson is doing a little better pain management wise. He has not had morphine since 2:30 p.m. yesterday, and the Lortab (tylenol with codeine) seems to be doing its job. Carson definitely lets us know when it wears off, but I am just glad that he is doing so well. The drainage tube whole seems to be closed unless Carson screams, then it leaks a little bit, but he is doing GREAT. Dr. Puccioni’s partner has already been in to check Carson out, and he didn’t say much, so I assume everything looks good. The vampires from the lab have been here as well to check some blood work.
Carson will be having some company today, but I am going to make sure that it is not too crowded in here at all times so he doesn’t get confused, since he can’t open his eyes. So we will see how the day goes from here.
Dr. Miller just made it in a little bit ago and said everything looks good. He was kind of shocked that Carson pulled out his own drain tube, but said the same thing Dr. Puccioni said, that it looked ok. He said that the catheter should have already been removed, so that is going to get done today sometime. Dr. Miller said that today is going to be one of the worst days in regards to Carson’s swelling and that they will talk about sending him home when he opens those beautiful blue eyes.
This morning the nurse took out Carson’s catheter and took off the o2 monitor off the fingers/toes. There has been several visitors already, all of which want updates. Carson snoozed much of the time, but listened at first. Carson and I have walked about eight laps around the floor so far and boy does his ears work. He can’t see anything, but he sure does know where particular sounds are coming from.
Carson is still making progress. YAY! He took a 2 hour nap this afternoon and after getting up from that nap, we tried giving him some solid food and he ate the whole 3.5 oz container and drank a 4 oz bottle. That is definitely some progress in the eating department from he has been doing. 🙂
March 27, 2011
To start off the day today, Carson got more pain medicine at 2 a.m. and decided that it was not quite time to go back to bed; that he wanted to eat first. He drank his 6 oz bottle, and shortly after, about 2 oz of that 6 oz, came back up after coughing/gagging, and all down daddy’s back. Boy did daddy like that one. HA-HA.
Dr. Puccioni’s partner came in about 7:30 a.m. and said everything is looking good, and that Carson could even come home today, or tomorrow, whatever we feel comfortable with. We have decided to stay the extra day because Carson is still running a 100-101 fever. So we will be coming home tomorrow. YAY!
Ok, so we thought about it, and we have decided to just go home today, because the only difference would be his eyes may be more open tomorrow. The fevers are common, and I am just hoping that Dr. Miller, the plastic surgeon comes in yet this morning so I can talk to him before we leave.
Dr. Miller just came by, and he still wants to see how Carson is doing throughout the day today and if his fever comes down some more and we feel comfortable, then we will be home tonight. If not we will be coming home tomorrow. 😀
At about 3 p.m. we got final notice that Carson could come home from the hospital. YAY! So we finished packing up all our belongings and the nurse got the discharge papers and we were out of the hospital by 5:15 p.m..
Now being at home, Carson seems to be doing a lot better. We don’t have to hold him all the time, he is satisfied sitting in his bouncy seat and playing with his toys. He knows that he is home and he sure does know his surroundings and did not waste any time finding the cats.
At about 7 p.m. we tried feeding Carson because he hadn’t eaten since around noon, and Chris just made a 5 ounce bottle because Carson hasn’t been eating much to begin with just yet, and as he was sucking down the formula, everything he had already swallowed, just came pouring out of his mouth, all over my lap. So I called the neurosurgeon’s office and left my number for the on-call doctor. He called me back about fifteen minutes later and I described to him what had happened earlier in the day and what had just happened, and he said that Carson should just stop taking the pain medication that was prescribed, which was Hydrocodone, and for us to just give him Tylenol.
So it may be a long painful night, and then some. We will have to play it by ear and see how it goes. Hopefully the Tylenol will do the trick, but if not, I will be calling the doctor’s office in the morning.
About 8:30 p.m. Carson had his first poopy diaper since his surgery and boy did it reek. Not only did it reek, but he completely blew out of his diaper and through his pajamas. I sure hope that made him feel better. Ha-Ha.
March 28, 2011
The first night home was pretty bad. Carson would not sleep in his crib even though we propped up his mattress. He would not sleep propped up on the floor with me. The only way he would sleep, was to be held. Carson’s temperature seems to be staying down for the most part, but we are making sure that we keep the Tylenol in his system for his pain, since Tylenol is a lot weaker than his Hydrocodone, and to keep managing his temperature, since Dr. Puccioni, the Pediatric Neurosurgeon, wants to make sure that Carson’s fever does not go above 100.4.
So I talked with a nurse from Dr. Puccioni’s office and they told me to try the pain medicine again and to stop giving him formula for a couple of days because formula is a little harder on the stomach, but to keep him hydrated. He is however, keeping down Pedialyte and solid foods.
Now that Carson has some pain medication back in his system, he does seem a little happier and is sitting in his bouncy seat playing, but we will see how long that will last. Today has definitely been a daddy day.
Now that we know Carson’s Pedialyte can sit on the counter instead of being in the refrigerator, he does take it a little better. He absolutely hated it being cold.
Chris is the best boyfriend in the world. He stays up all night with Carson and lets me sleep. When I get up, I take over and then he gets some rest during the day. It’s still pretty tough, but it is getting better and it will continue to do so, over time.
March 29, 2011
This is only the second full day of being home and it is still pretty tough. Carson still does not want to sleep at night. Sometimes he does sit in the swing or in the bouncy seat, but other times, it is all about holding him close.
The swelling in Carson’s face has gone down even more. He can’t open his eyes all the way yet, but they are getting there. He still has a lot of swelling in his head but that will get better with time too.
March 30, 2011
Today Carson has only had one dose of pain medication so far. We will give him another dose before bed and see how he does through the night. We have also tried giving him some watered down formula today, which he has kept down, so hopefully, he will be back to his normal bottles soon.
April 8, 2011
So Carson is officially seven months old today. WOO-HOO! He is growing so fast. Carson had his two week post op appointment this afternoon with the Dr. Jason Miller, the plastic surgeon, and he said everything looks good. Thank you Lord! We now have to go back in three months.
He said the first mark they made on Carson’s head, which the surgeons referred to it as Plan A, was a little closer to the hair line than Dr. Miller wanted, so that is why they moved it back a bit and his actual incision became Plan B.
Dr. Miller also said that Carson still has bruising under the eyes because everything pressure wise and all the fluid still from the surgery is still settling. So he said it will take a little bit longer for all the bruising to go away. Dr. Miller also told us that we can stop putting the peroxide and water mixture on his incision, that we have been doing since he came home from the hospital.
Carson has been sleeping through the night for the most part now, but his eating is still a little up and down, but Dr. Miller was not surprised by that and was not worried, and said it was pretty normal.
I am so thankful that everything is on schedule, healing wise, and that Carson is doing so well.
April 19, 2011
Today was the day Carson had his 3 week post op appointment with Dr. Puccioni, the neurosurgeon. He said that Carson’s incision looks perfect.
Dr. Puccioni’s nurse told us that in about a year or so, possibly around March of 2012, as the dissolvable plates and screws start to dissolve, Carson’s head may swell up again; only this time, it will look more like pockets, and that it will take three to four weeks for that swelling to go back down.
Other than that, Dr. Puccioni said that Carson needs to come back in three months for a check-up and then we don’t have to come back and see him unless Dr. Miller, the plastic surgeon, sees something that needs fixing.
I am so grateful that the Lord has made everything okay with my little boy. Now he can live a happy, normal life with no restrictions.
July 1, 2011
Well, today was Carson’s 3 month post op appointment with Dr. Jason Miller, the plastic surgeon and he said everything looks great, and on Carson’s recovery/healing looks right on target to where it should be. AWESOME NEWS, thank goodness!
I asked Dr. Miller about Carson starting to walk soon and him taking some falls and hitting his head, since our floors are hard wood floors, and he said by now, all the plates in Carson’s head should be rock solid by now, and that it would take A LOT of trauma to his head to dislodge any of the dissolvable plates or screws.
I also asked about his incision and whether or not any hair will grow within the scar, and he said no. His hair will only grow on both sides of the incision.
I also asked about the stringed knot that is on the top of his head, whether or not it was part of the internal sutures that are still there and he said that it is, and it should just fall off soon.
Not to mention, Carson’s hair is slowly growing in, but it is growing, finally. Now to await and see what the neurosurgeon has to say at the end of the month.
August 9, 2011
Well, today was Carson’s LAST appointment with Dr. Mark Puccioni, the neurosurgeon and his office. Today Dr. Puccioni had to perform a surgery so Carson saw his assistant Kristen who is totally amazing. She sounded amazed when we told her that this was not the only case of cranio in the Barrows family; she said that is something that you don’t hear/see too often.
I asked Kristen my question that Dr. Jason Miller, couldn’t really answer too clearly about why Carson’s incision is wider down by his ears than it is on the top of his head, and she said it’s because of him/babies laying on the sides of their heads and the stitches rubbing up against their sheets in their beds.
She also wanted to hold Carson, as she was going to miss seeing him, but glad that he doesn’t have to visit again. Carson went to her proudly and liked playing with her hair. Carson didn’t however want to wave ‘goodbye’ for whatever reason, but probably being shy all of a sudden.
All in all, GREAT news, and I am so relieved that Carson is such a STRONG little boy. He has been through so much and yet, he keeps going and going, like the energizer bunny. Surgery, check. Released from neurosurgeon, check. Now just a couple more years, at least, for the plastic surgeon.
Jena can be reached on Facebook and she would love to be there for you to mentor in your cranio journey. www.facebook.com/jenafitch
