If you know me, you also know it's no big surprise that you didn't get a Christmas letter this year (sorry!). So, in lieu of Christmas cards, I thought my blog would be a great way to give all our friends and loved ones a quick break down of 2011.
This year KC has been our rock! Normally I just call him a tree trunk, but this year he has been promoted to "rock" ;) In February, he broke his leg, tore all his tendons, and the mesh of tendons that keep the tibia and fibia together. It was a LONG recovery process, but he's finally back to work and has been working long long long hours to make up for lost time. He's now the Mormon Doctrine Teacher, which keeps him on his toes, but I think he's up for the challenge :) What little spare time he has is spent hanging out with the kiddos and supporting us in all of our massive number of activities going on around here.
As mother, I seem to be the glue that holds the family together. I'm busy running the kids to and from school, numerous therapies and doctors appointments, transporting Elisha to all of her athletic stuff, doing all the domestic stuff, helping my sister to run her business, helping my parents with their business, and a bazillion other projects that seem to pop-up when you have 6 active people at home. My goal for 2012 is to go to bed before 2 a.m. each night. I had a moment of insanity towards the end of the year and told our bishop that I thought Jacob was healthy enough for me to take on a job at church. Luckily they saw through my insanity and now I'm teaching Sunbeams (3-year-olds) with Jacob in tow terrorizing those poor little kids every step of the way. Church has never been so exciting. Luckily I bring snacks :)
Elisha is in "Beast" mode. This year she became a Sophomore, turned 16, started driving, started her 2nd year in Varsity Volleyball and broke her foot in the 3rd game. But of course, being Elisha, she didn't let that stop her. As her team was practicing each day for 2 hours, she was either in the weight room lifting or in a corner perfecting some of her skills preparing for the day she could play again. She missed the season but gained massive amounts of strength and skill as well. She's now playing club volleyball and the track coaches are salivating over her. Last summer she qualified for Nationals in the Junior Olympics in discus, but we weren't able to go due to time (we had a week's notice) and finances (babies with holes in their heart are expensive!). This year she plans on going and competing. And, based on the numbers put up from last year, she will be an earnest contender to win Nationals this year. Needless to say, some of the local colleges (WSU, ISU, and EWU) have already begun to show interest. So these next couple of years should be interesting with her.
Nathan turned 12 this year and immediately became a pre-teen. He now passes the sacrament at church and looks very dapper in his first real suit. He also looks like the spitting image of his FATHER!! He took a year off of sports to nurse his foot after surgery to lengthen his Achilles tendon and re-construct the arch in his foot. So, to fill the time he took up reading which he has devoured!! He goes through about 3-4 books (big ones - 500 - 700 pages each!) per week, and we just can't keep him stocked with books! He's already as tall as his mother and stands almost a full head above everyone in his grade. He's hoping to be able to play on the Church Basketball team this winter, and test his skills at basketball and football next year. I have a feeling the coaches will be very happy when they see HIM show up to practice!
Courtney is our little gladiator/roller-derby/princess. You will either see her twirling around in a pretty dress, buck naked, or in various stages of undress - and often all three of those several times over the course of an hour. Like her older brother, she stands several inches taller than her 2-year-old counterparts. She loves singing along to the radio, watching Beauty and the Beast, Megamind, or any number of movies, climbing things like chairs, tables, counters, shelving, etc. and listening to her family gasp and scream as she teeters precariously over the edge. She's definitely a daredevil and I have a feeling that 2012 will be no different. She certainly keeps a day from being boring! But with a smile like hers how can you not love her?
As a whole, it looks like our family has successfully learned to navigate all of the crazy obstacles and potholes life could throw at us. We're looking forward to 2012 and all of the adventures it will bring with it.
We love you all and have appreciated all of the support you have given us in thought, prayer, service, notes, and so much more! We have truly been blessed with an amazing group of friends, family, co-workers, and support system. We would never have been able to do it without all of you.
We hope that last year was a good one for each of you and that this year brings you much peace and joy.
Very sincerely,
The Allreds
My personal blog of life with a child who has Down Syndrome (Trisomy 21) and how he affects our lives. It's an adventure every step of the way!
Showing posts with label DRL. Show all posts
Showing posts with label DRL. Show all posts
Saturday, January 7, 2012
Saturday, December 18, 2010
At least he won't get pregnant. Problems with Feedings, and Medication Mix-ups.
I apologize for not posting sooner. Life around here has been crazy busy...as usual. So, here's the update to let you know what's gone on the last several days.
The hospital wound up putting a feeding tube into Jacob and he finally got to go home on Saturday the 11th. It became very apparent very quickly that the feeding tube was not all the doctor had made it out to be. Jacob can, indeed, feel the tube and spends a lot of time gagging, sneezing, coughing, etc. In spite of what the doctor said, he still ends up gagging until he vomits at least once a day. This gagging and vomiting continued to get worse and (even without the presence of food in his stomach) caused us to return yet again to the emergency room earlier this week to see if his ND tube had become dislodged. Luckily the tube was still in place, but the emergency room doctor had a talk with the cardiologist and then sat us down to give us a little friendly advice.
The cardiologist explained that it appeared to him that we were assuming that everything would be 'all better' with Jacob once the heart surgery occurred (which we were - because that is what all the doctors were telling us). However, in his experience as a cardiologist with patients just like Jacob, we needed to be aware that his problems with things such as the reflux and issues with feeding were not going to go away once the surgery occurred. He explained that a normal child would probably grow out of the reflux but Jacob is not normal and will most likely need some sort of surgery to repair the issues with reflux. Normally, they would suggest that he get the reflux taken care of before the heart surgery, but because of how fragile Jacob is, the heart surgery must be done first. However, the heart surgery cannot be done until he gains weight which is where the reflux becomes a problem. Thus, creating a bit of a catch 22
for Jacob. The cardiologist also mentioned that the pediatrician has done nothing to help create some sort of plan for the care of Jacob - she seems to just be reacting to all the diagnosis but not doing anything to help get him better. He suggested that she needed to become the 'quarterback' so-to-speak and take charge of the situation. Since she is the only doctor who will be with Jacob long term it is logical to think that she should be the person who creates the plan of attack, coordinates with all of the doctors, and makes sure that Jacob gets the care he needs in order to take care of all of his problems. This would take care of the problem we have of all the doctors changing the diagnosis of the previous doctors by putting her in control and making the final decision on everything based on all of the information the specialists provide. KC and I both agreed and promised the emergency room doctor we would talk to the pediatrician.
The next day, I called her office to discuss the fact that Jacob had been completely removed from oral feedings because he couldn't keep the oral feedings down. The only problem is that it took 2 hours for a nurse to call me back and when she did call me back I was informed that my doctor was not in that day and that she would forward the information onto the doctor the next morning. What?! I was supposed to let my 8 lb baby STARVE because my doctor wasn't in???? Nope. I don't think so. So KC and I worked the numbers as best we could, upped Jacob's ND feedings per hour to reflect the lost calories from the oral feedings and crossed our fingers that we weren't hurting out baby by messing with his feedings.
I finally got to talk to my doctor around 2PM the next day. Yes. Almost 24 hours later - and 36 hours since his last oral feeding I talked to my doctor. I explained to her what we had done, and the fact that we were not happy that we had to wait so long on a matter that had sent us to the hospital twice in the last two weeks. She agreed and said that she'd talk to her nurses about the issue and have them call her at home, since this is what they did on other matters with other patients. We agreed to meet on the 21st after I meet with the cardiologist to discuss Jacob and his feedings in more depth.
So, just when I thought things were getting better and calming down, today my husband KC came home and wound up having a 104.8 degree temperature. Soooooo off to the emergency room we went again. I got to see KC hooked up to many of the same machines that Jacob had been hooked up to - IV, oxygen, heart rate monitor, respiratory monitor, breathing monitor, blood pressure cuff, oxygen level monitor, etc. He even got a lumbar poke to check for meningitis like Jacob did. It was a bit surreal. Somewhat eerie. And I'm VERY VERY happy that they ultimately couldn't find anything wrong with KC and we were home a mere 6 1/2 hours after we entered the emergency room.
While we were at the emergency room, I had Elisha home with Courtney and Jacob and realized that this was not an acceptable option for her (I can barely take care of the two children on my own during the day - how was my 15 year old supposed to do it?). Luckily, one of her friends' moms is a nurse and was willing to take all four of my kids while we were in the emergency room and take care of Jacob and give him his medications while I was with KC.
When I finally came to her home at 11 p.m. to pick up Jacob they packed everything up including his medications. As they were packing, I noticed that she had a purple box of pills in the diaper bag. I asked Melissa if these pills were what she had given Jacob (he was supposed to take 1/2 a Previcet pill twice a day) this evening. She said that Elisha had given him his pill, so I looked at Elisha and she looked at me and said, "Yeah". I looked at both of them and said, "Well, at least we know he won't be getting pregnant!" Elisha had taken my birth control pills rather than the Previcet and had fed them to Jacob!!! :)
What a perfect ending to another wonderful day! But at least THAT is one boo boo we can laugh about! :)
The hospital wound up putting a feeding tube into Jacob and he finally got to go home on Saturday the 11th. It became very apparent very quickly that the feeding tube was not all the doctor had made it out to be. Jacob can, indeed, feel the tube and spends a lot of time gagging, sneezing, coughing, etc. In spite of what the doctor said, he still ends up gagging until he vomits at least once a day. This gagging and vomiting continued to get worse and (even without the presence of food in his stomach) caused us to return yet again to the emergency room earlier this week to see if his ND tube had become dislodged. Luckily the tube was still in place, but the emergency room doctor had a talk with the cardiologist and then sat us down to give us a little friendly advice.
The cardiologist explained that it appeared to him that we were assuming that everything would be 'all better' with Jacob once the heart surgery occurred (which we were - because that is what all the doctors were telling us). However, in his experience as a cardiologist with patients just like Jacob, we needed to be aware that his problems with things such as the reflux and issues with feeding were not going to go away once the surgery occurred. He explained that a normal child would probably grow out of the reflux but Jacob is not normal and will most likely need some sort of surgery to repair the issues with reflux. Normally, they would suggest that he get the reflux taken care of before the heart surgery, but because of how fragile Jacob is, the heart surgery must be done first. However, the heart surgery cannot be done until he gains weight which is where the reflux becomes a problem. Thus, creating a bit of a catch 22
for Jacob. The cardiologist also mentioned that the pediatrician has done nothing to help create some sort of plan for the care of Jacob - she seems to just be reacting to all the diagnosis but not doing anything to help get him better. He suggested that she needed to become the 'quarterback' so-to-speak and take charge of the situation. Since she is the only doctor who will be with Jacob long term it is logical to think that she should be the person who creates the plan of attack, coordinates with all of the doctors, and makes sure that Jacob gets the care he needs in order to take care of all of his problems. This would take care of the problem we have of all the doctors changing the diagnosis of the previous doctors by putting her in control and making the final decision on everything based on all of the information the specialists provide. KC and I both agreed and promised the emergency room doctor we would talk to the pediatrician.
The next day, I called her office to discuss the fact that Jacob had been completely removed from oral feedings because he couldn't keep the oral feedings down. The only problem is that it took 2 hours for a nurse to call me back and when she did call me back I was informed that my doctor was not in that day and that she would forward the information onto the doctor the next morning. What?! I was supposed to let my 8 lb baby STARVE because my doctor wasn't in???? Nope. I don't think so. So KC and I worked the numbers as best we could, upped Jacob's ND feedings per hour to reflect the lost calories from the oral feedings and crossed our fingers that we weren't hurting out baby by messing with his feedings.
I finally got to talk to my doctor around 2PM the next day. Yes. Almost 24 hours later - and 36 hours since his last oral feeding I talked to my doctor. I explained to her what we had done, and the fact that we were not happy that we had to wait so long on a matter that had sent us to the hospital twice in the last two weeks. She agreed and said that she'd talk to her nurses about the issue and have them call her at home, since this is what they did on other matters with other patients. We agreed to meet on the 21st after I meet with the cardiologist to discuss Jacob and his feedings in more depth.
So, just when I thought things were getting better and calming down, today my husband KC came home and wound up having a 104.8 degree temperature. Soooooo off to the emergency room we went again. I got to see KC hooked up to many of the same machines that Jacob had been hooked up to - IV, oxygen, heart rate monitor, respiratory monitor, breathing monitor, blood pressure cuff, oxygen level monitor, etc. He even got a lumbar poke to check for meningitis like Jacob did. It was a bit surreal. Somewhat eerie. And I'm VERY VERY happy that they ultimately couldn't find anything wrong with KC and we were home a mere 6 1/2 hours after we entered the emergency room.
While we were at the emergency room, I had Elisha home with Courtney and Jacob and realized that this was not an acceptable option for her (I can barely take care of the two children on my own during the day - how was my 15 year old supposed to do it?). Luckily, one of her friends' moms is a nurse and was willing to take all four of my kids while we were in the emergency room and take care of Jacob and give him his medications while I was with KC.
When I finally came to her home at 11 p.m. to pick up Jacob they packed everything up including his medications. As they were packing, I noticed that she had a purple box of pills in the diaper bag. I asked Melissa if these pills were what she had given Jacob (he was supposed to take 1/2 a Previcet pill twice a day) this evening. She said that Elisha had given him his pill, so I looked at Elisha and she looked at me and said, "Yeah". I looked at both of them and said, "Well, at least we know he won't be getting pregnant!" Elisha had taken my birth control pills rather than the Previcet and had fed them to Jacob!!! :)
What a perfect ending to another wonderful day! But at least THAT is one boo boo we can laugh about! :)
Labels:
Allred Hearts,
CHD,
congenital heart defect,
disability awareness,
down right living,
Down syndrome,
Downs syndrome,
DRL,
heart defect,
heart surgery,
LDS,
Mormon,
pediatrician,
reflux,
spokane,
T21,
Trisomy 21
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