We saw the cardiologist today for a follow up. He is very impressed with Gabe's progress. He will see him again in a month to run some tests to make sure things are progressing as they should and hopefully, at that time, take him off most of his meds. We will love that because the Sildenifil is given three times a day and one of those times is at midnight.
In true Gabe form, he put on quite a show today. He had Valentine candy to pass out to the office staff and he charmed everyone there. He even listened to one of the doctor's heartbeat with his stethoscope.
We will see the surgeon again in two weeks and after that, the appointments should taper off. We are just so excited that things are starting to fall together for our family. We only have a couple more weeks to be so home bound. I am going to start him in a Kindermusic class as soon as we can start getting out. We have many plans for spring and summer as well.
I will post periodically as we get more checkups and such. Thanks again for all of your support and prayers. It really helped get us through this. Even though we have had Gabe for 7 months now, we have always been so careful with him. It feels like now we will be able to do normal family things. We are over the moon! Thanks again!!
Ludlums
Thursday, February 4, 2010
Thursday, January 28, 2010
Home on the Range
Things are slowly getting better here at home. Gabe still isn't wanting to eat much, but hopefully that will change soon. He had one day this week when we saw his former appetite at all three meals. I thought we had turned the corner, but the next day, it was back to hardly eating. A boy can't live on American cheese alone, but if it were up to him....
We will be going to the cardiologist next week and they will likely conduct an echo cardiogram. We will know more about his heart function, etc. at that point. Assuming that we get a good report, I will likely start back to work a couple days a week. I am looking forward to that because I am not the best stay at home person. I don't think this weather helps much, we are going stir crazy. We try to get out for drives since we can't take him anywhere. Luckily there are still a couple people with Christmas lights up, which Gabe loves.
Sleeping has gotten a little better. Fingers crossed - we haven't had a nightmare for a couple days. Hopefully, that phase is over.
We are certainly seeing some of the results of his surgery. Gabe hasn't gotten winded once, even after taking on the stairs. It is awesome!
We haven't taken the opportunity to thank everyone who helped us out. First of all the doctors and nurses in the Pediatric Intensive Care Unit were outstanding. As usually, we got incredible care and attention.
Also, thanks for the meals that people brought. You have no idea how helpful it was to not have to worry about cooking. Plus the hospital cafeteria got really old really fast.
Someone sent us a Curious George DVD and there was no name on it. Whoever it was - thank you!
Thanks for all of the supportive visits, phone calls, texts and especially prayers. It is amazing to see how many lives Gabe has touched. It is especially moving to know since most of you haven't gotten to meet Gabe yet. That will hopefully change as soon as we get past our healing time. By spring, this kid will be all over the place!
Thanks again for everything and I will post the report from the doctor next week.
We will be going to the cardiologist next week and they will likely conduct an echo cardiogram. We will know more about his heart function, etc. at that point. Assuming that we get a good report, I will likely start back to work a couple days a week. I am looking forward to that because I am not the best stay at home person. I don't think this weather helps much, we are going stir crazy. We try to get out for drives since we can't take him anywhere. Luckily there are still a couple people with Christmas lights up, which Gabe loves.
Sleeping has gotten a little better. Fingers crossed - we haven't had a nightmare for a couple days. Hopefully, that phase is over.
We are certainly seeing some of the results of his surgery. Gabe hasn't gotten winded once, even after taking on the stairs. It is awesome!
We haven't taken the opportunity to thank everyone who helped us out. First of all the doctors and nurses in the Pediatric Intensive Care Unit were outstanding. As usually, we got incredible care and attention.
Also, thanks for the meals that people brought. You have no idea how helpful it was to not have to worry about cooking. Plus the hospital cafeteria got really old really fast.
Someone sent us a Curious George DVD and there was no name on it. Whoever it was - thank you!
Thanks for all of the supportive visits, phone calls, texts and especially prayers. It is amazing to see how many lives Gabe has touched. It is especially moving to know since most of you haven't gotten to meet Gabe yet. That will hopefully change as soon as we get past our healing time. By spring, this kid will be all over the place!
Thanks again for everything and I will post the report from the doctor next week.
Wednesday, January 20, 2010
Typed Too Soon
It appears that I typed too soon about the sleep. The nightmares started last night. He woke up twice very frightened. The second time, it took so long for us to comfort him and get him to calm down. It is so sad to see him so upset. I know that many people who have been on bypass report nightmares and very bizarre dreams. Hopefully, this will be short lived. Thanks for the prayers.
Tuesday, January 19, 2010
Updates
Well, this week is full of appointments for Gabe. We got blood drawn (total nightmare) and a chest xray yesterday. Then we saw the surgeon to check on his progress. He is very pleased with Gabe's progress. He isn't getting enough fluids, which we suspected, but it is hard to get a 2 year old to drink if they don't want to. We are having a terrible time with food, even his favorites. I know that people who have been on bypass complain that foods taste different, usually bad. I don't think that we had this much trouble after the last surgery. I practically put a smorgasbord in front of his at mealtime and he might have a couple bites of something. Then he will start spitting food out. The only thing that he really likes right now are barbecue or salt and vinegar potato chips. Nice. He normally eats really healthy, but I guess for now, we will make some concessions just so that he is eating something.
He has been sleeping really well. The last time, we had a heck of a time getting him back on a sleep schedule and he wasn't sleeping nearly as much as he should. Fortunately, the sleep wasn't an issue at all. I guess that is the trade off.
Gabe's chest xrays looked great and they managed to cut back one of his medicines after yesterday's appointment. We will see the pediatrician on Thursday for a follow up as well. So far, things are going well, we just have some adjusting to do. Gabe is still crabbier than usual, which I think is due to the discomfort/pain that he is still experiencing.
I will say the other advantage we had with the last surgery is that during our "quarantined time" at home was relieved with frequent walks in the stroller. I didn't realize what a great break that was! We are going a little stir crazy and we are only a few days in!
I will post an update in a couple days. Thanks again for thinking of us!
He has been sleeping really well. The last time, we had a heck of a time getting him back on a sleep schedule and he wasn't sleeping nearly as much as he should. Fortunately, the sleep wasn't an issue at all. I guess that is the trade off.
Gabe's chest xrays looked great and they managed to cut back one of his medicines after yesterday's appointment. We will see the pediatrician on Thursday for a follow up as well. So far, things are going well, we just have some adjusting to do. Gabe is still crabbier than usual, which I think is due to the discomfort/pain that he is still experiencing.
I will say the other advantage we had with the last surgery is that during our "quarantined time" at home was relieved with frequent walks in the stroller. I didn't realize what a great break that was! We are going a little stir crazy and we are only a few days in!
I will post an update in a couple days. Thanks again for thinking of us!
Thursday, January 14, 2010
YAY!!!!!
GABE IS HOME!!!!!!!!
He is happy to be home, but very sluggish. He is eating a little better and finally interested in drinking milk again. I am sure that we are in for a treat getting back on a sleep schedule. Thanks for all of the prayers. I will continue to post, but probably not as regularly. Thanks again!!!
He is happy to be home, but very sluggish. He is eating a little better and finally interested in drinking milk again. I am sure that we are in for a treat getting back on a sleep schedule. Thanks for all of the prayers. I will continue to post, but probably not as regularly. Thanks again!!!
Wednesday, January 13, 2010
Good Day
Gabe has had a great day today. The oxygen is off as well as most everything else. Assuming that everything else continues to progress today, he will be going home tomorrow. He is eating, but could stand to drink a little more.
He has spent a good part of his day cruising the ICUs and waving at all of the people. He has been blowing kisses to everyone.
Brian is working tonight and I will go home to get things ready for his return. We are so excited to get back into our routine. I am sure that sleep will be all mixed up, as it was the last time. Fortunately, we will have lots of time at home to get that straightened out. Thanks again for all of the positive thoughts and prayers.
He has spent a good part of his day cruising the ICUs and waving at all of the people. He has been blowing kisses to everyone.
Brian is working tonight and I will go home to get things ready for his return. We are so excited to get back into our routine. I am sure that sleep will be all mixed up, as it was the last time. Fortunately, we will have lots of time at home to get that straightened out. Thanks again for all of the positive thoughts and prayers.
Tuesday, January 12, 2010
Never a Dull Moment
Brian stayed last night and reported this morning was great. He said that Gabe was laughing and giving kisses. Many nurses came in to see him and he would blow kisses to everyone. I didn't get there until about 11:00 and he was getting tired and was crying. Brian said that he had only slept about 4 hours and had been up since 4:00 a.m. He was continuing to fuss, so the nurses figured it was a good time to pull his chest tube. He was a little shaky at the time, which they attributed to stopped the precedex (sedative) this morning. They gave him Versed (our favorite) and he did ok to get that out. They pulled many things at that time. We enjoyed the rest of the Versed time with a wagon ride. He was waving to all of the people in ICU, he was the social attraction of the day. Brian finally went home around 3 to sleep. Gabe started to fuss and I decided to try to put him down. That is when the fun stopped.
It turns out that his shakes were a withdrawal from the medicine. He was so agitated and he was thrashing in his crib. He was crying for about 3 hours. There was nothing I could do to sooth him, it was horrible. Even when I would hold him (which I FINALLY got to do today) he was push me away. They gave him Adavan a couple times during the day to help with this withdrawal, but he reacted to that and the medicine made it worse.
I was so upset because Gabe needed sleep so bad, but he was really fighting it. We decided that the Adavan was making it worse, the Nurse Practitioner agreed and gave him Chloral Hydrate to sleep. They said it could take 45 minutes to kick in and he was still phrasing and really fighting me. I had to halfway lay on him to keep him from trying to stand up for the hour it took for the medicine to work. He was so over tired and angry, it was one of the hardest things that I have ever had to do. A couple of times, I had to walk away and the nurse would come in and take over.
He has now been asleep for a little over 3 hours and it has been great. This is really what he needs. Brian came back after only a couple hours of sleep. I really don' t know how he is managing with such little sleep. But he is so darn stubborn, I can't get him to stay at home more. Hopefully, we will be home by the weekend and Brian can relax a little more there. Thanks for the continued prayers. Hopefully, tomorrow will be better.
It turns out that his shakes were a withdrawal from the medicine. He was so agitated and he was thrashing in his crib. He was crying for about 3 hours. There was nothing I could do to sooth him, it was horrible. Even when I would hold him (which I FINALLY got to do today) he was push me away. They gave him Adavan a couple times during the day to help with this withdrawal, but he reacted to that and the medicine made it worse.
I was so upset because Gabe needed sleep so bad, but he was really fighting it. We decided that the Adavan was making it worse, the Nurse Practitioner agreed and gave him Chloral Hydrate to sleep. They said it could take 45 minutes to kick in and he was still phrasing and really fighting me. I had to halfway lay on him to keep him from trying to stand up for the hour it took for the medicine to work. He was so over tired and angry, it was one of the hardest things that I have ever had to do. A couple of times, I had to walk away and the nurse would come in and take over.
He has now been asleep for a little over 3 hours and it has been great. This is really what he needs. Brian came back after only a couple hours of sleep. I really don' t know how he is managing with such little sleep. But he is so darn stubborn, I can't get him to stay at home more. Hopefully, we will be home by the weekend and Brian can relax a little more there. Thanks for the continued prayers. Hopefully, tomorrow will be better.
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