Wednesday, October 31, 2007
Friday, October 26, 2007
5 Months Old!
Our little guy turned 5 months old yesterday! I can't believe how fast time has flown by!
Mason is still doing great. He weighed in at 10 lbs, 9 oz on Wednesday. We are hoping that this means he will be over 11 pounds for his surgery. His tube feeds were increased again to help keep his momentum going.
Our visit to the Pulmonologist on Wednesday went great. They were really pleased with how clear his lungs were sounding and thought that his lungs would not give us any trouble during his surgery. He will probably be left on the ventilator after the surgery (most kids come right off) for about 24 hours just to be safe. Given his history, they don't want to take any chances. At this point Travis and I are still trying to mentally prepare ourselves to see him on the vent again.
Wednesday was exciting in other ways as well. Mason ended up getting an x-ray in the morning to check the placement of his feeding tube. He was getting a clog before we left for the hospital and I flushed his line out with warm Coke. Minutes later he threw up Coke which seemed strange since he is feed into his intestines. The tube placement ended up fine and the nurse said that maybe he just prefers Pepsi. When we got home, I was giving some meds and his tube clogged up for good. We had to pack right back up and head back to the hospital for a new tube (his 7th one). Long story short, the receptionist at radiology gave us a hard time mainly because she was confused since we had been there already and didn't believe that we needed more x-rays. She had me so frustrated that I ended up having to give her a piece of my mind. I refused to leave until Mason got the films we needed and I was confident his new tube was placed correctly.
I have taken some video on our digital camera that I would like to post, but have not figured out how yet. I will work on it this weekend.
Mason is still doing great. He weighed in at 10 lbs, 9 oz on Wednesday. We are hoping that this means he will be over 11 pounds for his surgery. His tube feeds were increased again to help keep his momentum going.
Our visit to the Pulmonologist on Wednesday went great. They were really pleased with how clear his lungs were sounding and thought that his lungs would not give us any trouble during his surgery. He will probably be left on the ventilator after the surgery (most kids come right off) for about 24 hours just to be safe. Given his history, they don't want to take any chances. At this point Travis and I are still trying to mentally prepare ourselves to see him on the vent again.
Wednesday was exciting in other ways as well. Mason ended up getting an x-ray in the morning to check the placement of his feeding tube. He was getting a clog before we left for the hospital and I flushed his line out with warm Coke. Minutes later he threw up Coke which seemed strange since he is feed into his intestines. The tube placement ended up fine and the nurse said that maybe he just prefers Pepsi. When we got home, I was giving some meds and his tube clogged up for good. We had to pack right back up and head back to the hospital for a new tube (his 7th one). Long story short, the receptionist at radiology gave us a hard time mainly because she was confused since we had been there already and didn't believe that we needed more x-rays. She had me so frustrated that I ended up having to give her a piece of my mind. I refused to leave until Mason got the films we needed and I was confident his new tube was placed correctly.
I have taken some video on our digital camera that I would like to post, but have not figured out how yet. I will work on it this weekend.
Tuesday, October 23, 2007
Saturday, October 20, 2007
Busy Week
We are having some technical difficulties getting the pictures from last weekend onto the photo gallery. Hoping to get them up early next week.
Well, this week started with a bang! Monday at about 4pm, Mason's feeding tube became clogged. This usually happens on a daily basis and we are able to free up the clog with some warm water and a little pressure from a syringe. Unfortunately this clog would not budge! We tried water and coke to no avail. We had to make a trip to the ER, which happened to be on one of the most busy evenings, to try and get the tube unclogged. The ER docs tried orange juice, cranberry juice, sodium bicarbonate, and some other special remedies. Nothing worked! It was then we got the disappointing news that they would need to start an IV (so that Mason would not dehydrate) and admit him overnight so that he could have a new tube placed on Tuesday. I stayed with Mason while Travis went home to sleep and work the next day. Mason was finally admitted to a room at 3am. The next day he received a new tube at 2pm. The tube went in fairly easily compared to some of the other placements he has experienced. I was impressed and the docs discharged us right away so that we could take him home and start his feeds and give him his meds.
We did discover something positive with this experience. Since Mason had not been fed for a few hours, we tried to feed him a bottle in the ER. He sucked down an ounce and wanted more. He is only allowed an ounce every 3 hours to prevent lung damage if he aspirates so we had to take the bottle away and replace it with his pacifier. This shows us that Mason is capable of feeding orally but is just not hungry or interested when he is continuously fed. We have some high hopes when he gets his g-tube and moves to bolus feeds. Once he can feel hunger, I think he will surprise us all!
The next morning, Mason started to gag on his new tube and vomited. When he did this the tube came out of his nose pretty far (enough for me to be concerned). We then made a trip to his pediatricians office for an x-ray to confirm tube placement. We were lucky and the tube stayed in his intestines (I have no idea how).
The rest of the week was pretty uneventful. Mason started Previcid to help with his reflux. He was previously on Prilosec that he had to take orally. I think he only kept it down a couple of times. The Previcid can go into his NJ tube and so far seems to really be helping!
Well, this week started with a bang! Monday at about 4pm, Mason's feeding tube became clogged. This usually happens on a daily basis and we are able to free up the clog with some warm water and a little pressure from a syringe. Unfortunately this clog would not budge! We tried water and coke to no avail. We had to make a trip to the ER, which happened to be on one of the most busy evenings, to try and get the tube unclogged. The ER docs tried orange juice, cranberry juice, sodium bicarbonate, and some other special remedies. Nothing worked! It was then we got the disappointing news that they would need to start an IV (so that Mason would not dehydrate) and admit him overnight so that he could have a new tube placed on Tuesday. I stayed with Mason while Travis went home to sleep and work the next day. Mason was finally admitted to a room at 3am. The next day he received a new tube at 2pm. The tube went in fairly easily compared to some of the other placements he has experienced. I was impressed and the docs discharged us right away so that we could take him home and start his feeds and give him his meds.
We did discover something positive with this experience. Since Mason had not been fed for a few hours, we tried to feed him a bottle in the ER. He sucked down an ounce and wanted more. He is only allowed an ounce every 3 hours to prevent lung damage if he aspirates so we had to take the bottle away and replace it with his pacifier. This shows us that Mason is capable of feeding orally but is just not hungry or interested when he is continuously fed. We have some high hopes when he gets his g-tube and moves to bolus feeds. Once he can feel hunger, I think he will surprise us all!
The next morning, Mason started to gag on his new tube and vomited. When he did this the tube came out of his nose pretty far (enough for me to be concerned). We then made a trip to his pediatricians office for an x-ray to confirm tube placement. We were lucky and the tube stayed in his intestines (I have no idea how).
The rest of the week was pretty uneventful. Mason started Previcid to help with his reflux. He was previously on Prilosec that he had to take orally. I think he only kept it down a couple of times. The Previcid can go into his NJ tube and so far seems to really be helping!
Sunday, October 14, 2007
Exciting Weekend
I can't believe it has already been a week since I last posted! My how time flies!
Mason had a good week. His week started with a physical therapy evaluation on Monday. His eval went great and the doctor was really impressed with how well he moves considering his history. There are only two concerns that she will keep an eye on. The first is that he favors his left hand when grabbing toys. Babies his age should show no preference from side to side. This could easily be because his right hand almost always has a glove or sock on it to prevent him from pulling out his feeding tube. It could also be the result of his brain bleed or other ECMO complication. Only time will tell. The other concern is that she will need to keep an eye on his leg flexibility. His knees seems sort of stiff to her. This is also common in most babies, so after he is a year old she will re-evaluate his leg flexibility. The good news is that she feels he does not need any outpatient physical therapy! This will save us a few trips to the hospital :) Mason will have Early On come to the house (through Plymouth-Canton schools) to work with him on a regular basis.
The week ended with a big trip up north to see his Grandma and Grandpa Ellinger. It was his Grandpa's retirement party and we wanted to be there for the big event (although Mason could not attend the party since it is RSV/cold/flu season). We went left Saturday morning and returned this evening. The drive up was a little rocky. Mason napped a little and things seemed to be going smoothly, then Mason had a pretty major diaper malfunction! It was the kind that needed a complete change of clothes (in the car at a rest stop). It wouldn't have been too bad if it wasn't for Buster barking at all the other dogs taking a "break". Lets just say our car was complete and utter chaos for about 10 minutes and we even managed to lose one of his socks. We still can't find it! After that Mason was so worn out that he slept almost the rest of the way. Saturday night was the party, so Travis and I went while my parents (Grandma and Grandpa Sennett) babysat at the Ellinger house. It was our first time away from Mason. We were nervous parents but we knew he was in great hands! I left after the dinner, toasts and speeches to watch Mason so that my parents could catch the second half of the party. Mason was such a good boy over the weekend and had lots of fun with his Grandmas and Grandpas. He was tuckered out and slept the whole way home (about 3 and a half hours).
Everyone from Alcona County has been so supportive! We had many people congratulate us and ask about Mason's progress. We appreciate the warm wishes and all of the prayers!
Look for some updated pictures on his Photo Gallery later this week!
Mason had a good week. His week started with a physical therapy evaluation on Monday. His eval went great and the doctor was really impressed with how well he moves considering his history. There are only two concerns that she will keep an eye on. The first is that he favors his left hand when grabbing toys. Babies his age should show no preference from side to side. This could easily be because his right hand almost always has a glove or sock on it to prevent him from pulling out his feeding tube. It could also be the result of his brain bleed or other ECMO complication. Only time will tell. The other concern is that she will need to keep an eye on his leg flexibility. His knees seems sort of stiff to her. This is also common in most babies, so after he is a year old she will re-evaluate his leg flexibility. The good news is that she feels he does not need any outpatient physical therapy! This will save us a few trips to the hospital :) Mason will have Early On come to the house (through Plymouth-Canton schools) to work with him on a regular basis.
The week ended with a big trip up north to see his Grandma and Grandpa Ellinger. It was his Grandpa's retirement party and we wanted to be there for the big event (although Mason could not attend the party since it is RSV/cold/flu season). We went left Saturday morning and returned this evening. The drive up was a little rocky. Mason napped a little and things seemed to be going smoothly, then Mason had a pretty major diaper malfunction! It was the kind that needed a complete change of clothes (in the car at a rest stop). It wouldn't have been too bad if it wasn't for Buster barking at all the other dogs taking a "break". Lets just say our car was complete and utter chaos for about 10 minutes and we even managed to lose one of his socks. We still can't find it! After that Mason was so worn out that he slept almost the rest of the way. Saturday night was the party, so Travis and I went while my parents (Grandma and Grandpa Sennett) babysat at the Ellinger house. It was our first time away from Mason. We were nervous parents but we knew he was in great hands! I left after the dinner, toasts and speeches to watch Mason so that my parents could catch the second half of the party. Mason was such a good boy over the weekend and had lots of fun with his Grandmas and Grandpas. He was tuckered out and slept the whole way home (about 3 and a half hours).
Everyone from Alcona County has been so supportive! We had many people congratulate us and ask about Mason's progress. We appreciate the warm wishes and all of the prayers!
Look for some updated pictures on his Photo Gallery later this week!
Sunday, October 7, 2007
Good News, Bad News
I will start with the good news. Mason has had a pretty good week. His battle with gas pain seems to be letting up a little. Our pediatrician said he would most likely outgrow some of it. Mason also gained 9oz over the last couple of weeks. He now weighs in at 9lbs 12oz! 8 more ounces and he will have doubled his birth weight. He is continuing to play, grab and talk to his toys. He even tried to make a laughing sound with his Dad tonight. It was the cutest thing!
On to the bad news. We had an appointment on Friday to discuss Mason's upper GI with his surgeon. His upper GI was not good and he is not even close to being ready to get fed into his stomach with an NG tube. His reflux is very bad and the docs are concerned that he will aspirate into his lungs which could be fatal in his case. Now that he is getting older he will be starting to pull out his NJ tube more often. It is just not feasible to have it in for much longer as he needs to have it placed by x-ray every time he pulls it out. It is not just one x-ray, but rather a "motion picture" made by taking numerous x-rays. I am sure he gets a pretty good dose of radiation every time it is placed and he has had 5 placements so far. The surgeon feels the best course of action would be placing a g-tube (directly through the belly into the stomach) and a Nissen wrap (to try and prevent reflux). This is necessary to protect Mason's airway.
Mason will be admitted to UofM for surgery on 11/14/07. He will stay for about 5 days, maybe longer. It will be a major surgery for him, with some risks. He will need to go back on the vent for the surgery and right now we are unsure how long it will take him to come back off. He will be given lots of fluid for the surgery and this will put a burden on his lungs, making it difficult for him to breathe on his own. He will also be fed into his stomach for the first time and will need to be watched closely for reflux, etc. Hopefully, with a successful surgery, Mason can begin to use his stomach and learn to eat more by mouth.
On to the next bit of bad news. Travis and I have made the tough decision to sell the house we just had built last fall. My new role as a stay at home Mom coupled with some unexpected career changes for Travis, has unfortunately put us in a financial bind. Our family is what is most important to us and we do not want to take on any additional jobs at this point just to support a mortgage and sacrifice important time together. We are planning to downsize so that we can live comfortably on our new family income, and still spend lots of family time together.
On to the bad news. We had an appointment on Friday to discuss Mason's upper GI with his surgeon. His upper GI was not good and he is not even close to being ready to get fed into his stomach with an NG tube. His reflux is very bad and the docs are concerned that he will aspirate into his lungs which could be fatal in his case. Now that he is getting older he will be starting to pull out his NJ tube more often. It is just not feasible to have it in for much longer as he needs to have it placed by x-ray every time he pulls it out. It is not just one x-ray, but rather a "motion picture" made by taking numerous x-rays. I am sure he gets a pretty good dose of radiation every time it is placed and he has had 5 placements so far. The surgeon feels the best course of action would be placing a g-tube (directly through the belly into the stomach) and a Nissen wrap (to try and prevent reflux). This is necessary to protect Mason's airway.
Mason will be admitted to UofM for surgery on 11/14/07. He will stay for about 5 days, maybe longer. It will be a major surgery for him, with some risks. He will need to go back on the vent for the surgery and right now we are unsure how long it will take him to come back off. He will be given lots of fluid for the surgery and this will put a burden on his lungs, making it difficult for him to breathe on his own. He will also be fed into his stomach for the first time and will need to be watched closely for reflux, etc. Hopefully, with a successful surgery, Mason can begin to use his stomach and learn to eat more by mouth.
On to the next bit of bad news. Travis and I have made the tough decision to sell the house we just had built last fall. My new role as a stay at home Mom coupled with some unexpected career changes for Travis, has unfortunately put us in a financial bind. Our family is what is most important to us and we do not want to take on any additional jobs at this point just to support a mortgage and sacrifice important time together. We are planning to downsize so that we can live comfortably on our new family income, and still spend lots of family time together.
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