DJ's Detectors
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This month started out with Mason as normal as any child can be. After everything he has been through up to this point with the growth in his throat, and not being able to breathe, we felt like we had it whipped. He was learning to use his hands, trying to talk to us when we talked to him, and just being a great little kid. He was eating good and gaining weight. What a wonderful time it was.
Wednesday May 12th, his breathing became very labored again. We took him the the emergency room in Ottumwa, and he was given a steroid injection to reduce any swelling in his throat. This helped and he was breathing better by Thursday morning. We had an appointment in Iowa City for Thursday the 13th so we kept that. Thursday the 13th.. His ENT doctor in Iowa City decided to book an operating room to scope his throat and see how much the growth had changed since he left the UNI hospital in April 2004. Friday the 14th.. His ENT doctor in Iowa City decided to book an operating room to scope his throat and see how much the growth had changed since he left the UNI hospital in April 2004. So they prepped him for the operating room. This procedure is done under sedation in an operating room to reduce complications. They brought photos of the growth, which we had seen before, and we couldn't believe how much it had grown. It has his airway nearly 90% blocked. What amazed us even more was the fact that he was breathing good and his oxygen levels were normal. So it was decision time. We went with his doctors advice and had a tracheotomy done. He is accepting it very well so far. As far as a time frame this will remain in his throat, we don't know. Probably a year or so. It really depends on how the hemangeoma ( the growth) grows. They can stop growing anytime from 6 months to a year+ of age. They also did laser surgery at the same time to trim the growth from his airway. Removing it completely was not an option as it can cause damage to the airway and become a major problem. This will be done every 6 weeks or so until the growth stops growing. By doing the laser surgery every 6 weeks we can track the growth rate of it also.
Saturday the 15th.. Mason was removed once again from the ventilator hooked to his trach tube. He is breathing great on his own, with just a bit of oxygen assistance. He has once again started feeding from a bottle. Most of the day he spends sleeping. And just trying to feel better.
Sunday the 16th.. Mason slept very well through the night. Jarita and I are learning to do the care of the trach. There is much to learn. It seems as all 3 of us are coming to terms with this well. We can't believe how well Mason is taking to his new way of breathing. He smiles and wiggles around just like he did a few days ago. It just doesn't seem to bother him at all. The one thing we are having a bit of trouble with is that he doesn't make much for noise anymore. Occasionally some air will slip past his trach tube and run across his vocal cords. This makes a bit of sound. The staff here at UHIC are awesome. They are so patient with us and really good with Mason.
Monday the 17th.. Today Mason was moved from the PICU to a regular Peds room. He is doing very good, except for a bit of congestion in his trachea. We continue to suction the trach on a regular basis to keep him breathing right. He got real mad once this evening and after a deep breath I put my finger over the trach so he could hear his voice. It was great to hear him scream again. I didn't think I would miss the sound of him screaming as much as I do. The little round cylinder under his chin is a humidifier to keep the junk in his throat loosened up. I really think he is adapting to this better than Jarita and I are.
Tuesday the 18th.. Mason he is taking to this very well. He had a great day. No problems at all. He is still smiling, eating, and well you know, just like a baby should. His apatite is as good as it has ever been. Jarita and I are learning to do all the things we need to do to take care of a trach baby. Man there is a lot to learn to keep him safe. Bunches of equipment to get for the home and travel also. We are trying to line up the mandatory in home nurse so we can go home when we are trained. They won't let us go home with him until a nurse is in place. Jarita and I are doing all the things we need to so far with no troubles. We need to learn how to change the trach tube yet and the CPR in case we need to perform that on him in an emergency. It is a bit overwhelming but we are very thankful he is doing as well as he is. This could have been much worse.
Wednesday the 19th.. Mason had a very good night last night. He woke this morning to a good feeding, some play time, then a nap. He gets plenty of naps. About 8:30 the doctor came in and did the first change of his trach tube. It went very well and seemed fairly easy. The stitches holding the first tube in were removed and all went well. The rest of the day was spent keeping the tube clear for him, feedings, diaper changes, and the usual baby things. Tomorrow Jarita and I will change the tube ourselves, and learn to use the equipment we will have at home to take care of him, and start our CPR classes. It was a good day for us all.
Thursday the 20th.. Today was an awesome day. Mason was happy all day. Jarita and I started the day with learning to change Mason's trach tube. Jarita removed the old one and I put the new one. This was much easier then I thought it would be. Tomorrow we reverse roles in the change. After that we will only need to change it every Wednesday and Sunday. Then we took our CPR class and learned how to deal with it if Mason stops breathing. Our take home equipment arrived today, so we loaded it and Mason up in the stroller 2 times today and went for about an hour walk around the hospital each time. Mason really enjoyed it. He was giving big smiles to anyone that said hi to him. A really great day.
Friday the 21st.. Mason is going home today. Jarita and I have learned all the things we need to handle the emergencies that may arise with him. He has taken to this so well. My Grandma Carol and Aunt Jo stopped by to see me today before we left. We tried out his front carrier to see if it would work with his trach. It works fine. We had a nice walk. We would like to give a big Thank You to all the nurses, doctors, and staff at UHIC. You were all awesome and we really appreciate the way you take care of our son while he is in your care. We arrived at home, and got his nursery all set for the changes we needed. Grandma Amy came over to help us get some of the changes made.
Saturday the 22nd.. well our first day back at home went pretty smooth. Our in home nurse showed up at 8:00 am right on time. This is good as it gives Jarita and I time to sleep each day. We need to have someone watching Mason 24/7 for now. In the event the trach tube plugs, we need to get air to him immediately. Care in the home is working well. Now for Mason. He is really figuring out that his hands were made for something. He is starting to play with things. He started playing peek a boo with his blanket today. He is such a happy baby. It is great to be home.
Sunday the 23rd.. Today went very smooth. Jarita has been staying up with Mason at night, and I have been taking the days. The mornings we spend together. Jarita and I did our first in home trach change today. It went very smooth and Mason did great. He is having a good time with Mom and Dad at his call 24/7. He is so gonna be spoiled with love. He is eating real good, and sleeping good also. He also held his own bottle for the first time today !!!
Wednesday the 26th.. Mason had his 4 month checkup today with his regular doctor. He is doing well except for his weight is off just a bit. I am guessing everything he has gone through the last couple weeks took it's toll on him. We will up the calories in his food and see if we can catch him up. He has spent the last couple days working very hard at rolling over. More on that soon when he gets it accomplished. We changed the trach today. we do that every Wednesday and Sunday. We still can't believe how happy this little boy is all the time.
Sunday the 30th.. Well the last few days with Mason have been a lot of fun. He is doing very well. His concentration level is amazing. He will sit and watch as you read a whole children's book to him. He notices everything around him. He is like a little sponge just soaking up the world. He has very few bad moments where he is unhappy. He is getting along with his trach very well so far. I think his favorite game is to play peek a boo with his blankets.
Mason has been working very hard to learn to roll over. He has accomplished this feat a few times, but I have never caught it on camera yet. Here is a series of photos showing him trying. He finally got mad and let me know it.
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