Well, I sure have a lot of catching up to do! I have a ton of pictures to post and I will get to it. Each day I will post more, so as not to overwhelm you all at once. Plus, I really need to get to bed tonight! I am beat and I have a TON to get done tomorrow.
Dawson is doing really good. We are so happy to have him home. After we first got him out of the hospital he was having a really hard time sleeping and he was really fussy. We didn't know if that was because his shunt wasn't working or if it was because he was still recovering. We watched him and decided on Sunday that we would not drive home quite yet. We wanted to stop at PCMC to have a CT scan done so we knew for sure how the shunt was doing.
When we got there and got all of that done we could see that his left ventricle was quite large. Dawson has always had a programmable shunt. This means that if there is too much pressure or too little pressure they can adjust the flow or pressure. After the 21st revision we found the magic number. Dawson has only been stable with his shunt set at 200, which means the shunt is draining the smallest amount possible. If the shunt is set lower he usually has over drainage headaches, and well, we don't want him to have to endure that again!
With his venticle being larger than normal, the Neuro Surgeon thought that the pressure wasn't high enough. So he changed the programming, by placing a special magnet on Dawsons head for 2 seconds, to 140. YIKES! Ryan and I were really nervous about that. We were told that we could go ahead and go home and that Dawson SHOULD be OK. Well they didn't have to do much talking. I hadn't been home for 3 weeks and I wanted to go home. I think the kids and especially Dawson did too. We headed home, with thoughts that we would most likely have to come back down within a week.
Well, it was rough a bit at first, but I am happy to say that Dawson is adjusting quite well. We are still watching him very closely and prepared to make a run to Utah, if we have too. Dawson, in the last couple of days, has been happier and has even allowed us to put him in down, IF we put him in his swing. He has lost so much weight. That is a bit alarming to me. We are trying to find ANYTHING that he can and will eat, that he is not allergic too, and that has enough fat, protein and calories to put some weight on his little body. He absolutely loves sweet potatoes, pureed with butter and brown sugar. What a treat! We are taking him to Boise to an allergy doctor. They will test him for all of the allergies and they will test him to see what high calorie foods he can handle. Then if we can just get him to eat them, we should be in business.
Thanks so much for all of your thoughts and prayers! We love you all so much! You all mean so much to us! THANK YOU for everything! I will continue to post over the next few days. We have SO many pictures, and they are quite fun! Jake has had his Utah Bday party and will have his Idaho one this weekend. I am sure we will have plenty of pictures of that too!
Until then.........
Dawson is doing really good. We are so happy to have him home. After we first got him out of the hospital he was having a really hard time sleeping and he was really fussy. We didn't know if that was because his shunt wasn't working or if it was because he was still recovering. We watched him and decided on Sunday that we would not drive home quite yet. We wanted to stop at PCMC to have a CT scan done so we knew for sure how the shunt was doing.
When we got there and got all of that done we could see that his left ventricle was quite large. Dawson has always had a programmable shunt. This means that if there is too much pressure or too little pressure they can adjust the flow or pressure. After the 21st revision we found the magic number. Dawson has only been stable with his shunt set at 200, which means the shunt is draining the smallest amount possible. If the shunt is set lower he usually has over drainage headaches, and well, we don't want him to have to endure that again!
With his venticle being larger than normal, the Neuro Surgeon thought that the pressure wasn't high enough. So he changed the programming, by placing a special magnet on Dawsons head for 2 seconds, to 140. YIKES! Ryan and I were really nervous about that. We were told that we could go ahead and go home and that Dawson SHOULD be OK. Well they didn't have to do much talking. I hadn't been home for 3 weeks and I wanted to go home. I think the kids and especially Dawson did too. We headed home, with thoughts that we would most likely have to come back down within a week.
Well, it was rough a bit at first, but I am happy to say that Dawson is adjusting quite well. We are still watching him very closely and prepared to make a run to Utah, if we have too. Dawson, in the last couple of days, has been happier and has even allowed us to put him in down, IF we put him in his swing. He has lost so much weight. That is a bit alarming to me. We are trying to find ANYTHING that he can and will eat, that he is not allergic too, and that has enough fat, protein and calories to put some weight on his little body. He absolutely loves sweet potatoes, pureed with butter and brown sugar. What a treat! We are taking him to Boise to an allergy doctor. They will test him for all of the allergies and they will test him to see what high calorie foods he can handle. Then if we can just get him to eat them, we should be in business.
Thanks so much for all of your thoughts and prayers! We love you all so much! You all mean so much to us! THANK YOU for everything! I will continue to post over the next few days. We have SO many pictures, and they are quite fun! Jake has had his Utah Bday party and will have his Idaho one this weekend. I am sure we will have plenty of pictures of that too!
Until then.........
2 comments:
See if he's allergic to coconut milk. If he likes the flavor and will eat it, it's very high in fat.
PERFECT!!! Thanks for the suggestion! I also thought about adding Tofu to some of his food to give him protein. If the coconut works, he is on his way to being a chunky monkey!!
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