To all of the ladies out there-
I am a member of a local message board for other mommies and I posted a question about how to throw a fundraiser and to just get some ideas for one that we are planning on having in early 2009. Another mommy on the board sells Arbonne beauty products and offered to donate to Max what she would make from her sales in September and October. She wanted me to pass on the following link to her website that explains the whole process to you. Please pass this on to anyone that you think may be interested in the products.
http://www.palassis.com
I am thanking you all in advance for helping us out with Max's medical supplies and bills. If you have any questions please don't hesitate to ask.
Thanks again! Beth
September 28, 2008
We ran into another road block on Friday when Max's scrotum swelled up to the size of an adult fist. According to the radiologist and urologist it isn't a hernia or a hydrocele which would mean no surgery. Myself, Tim and the nephrologist and physicians are not convinced of this yet. Once the dialysis was stopped his scrotom went back down to regular size within about 24 hours, which would mean that there is some kind of connection between his scrotom and his pertineal cavity. What they are going to do is restart the dialysis today and watch to see if it swells back up. If it does they will get an ultrasound immediately to see if the radiologist can see a hernia or hydrocele while the fluid is actually flowing in that direction.
So, Max was suppose to come home tomorrow (Monday), but once again that isn't going to happen. If (God forbid) Max needs another surgery, he will obviously be in the hospital for probably another month.
Keep your fingers crossed that it was just a fluke and nothing else will come from it. Please say an extra prayer that all goes well with this round of dialysis!
So, Max was suppose to come home tomorrow (Monday), but once again that isn't going to happen. If (God forbid) Max needs another surgery, he will obviously be in the hospital for probably another month.
Keep your fingers crossed that it was just a fluke and nothing else will come from it. Please say an extra prayer that all goes well with this round of dialysis!
September 26, 2008
WOOHOO!
I am so excited to announce that Max is officially taking a full three ounces every three hours! Of course he is not wanting anything to do with the bottle, but that's okay! The best part about this is that he is tolerating it great! He used to be very fussy when it came to being fed, but it seems like he is doing a lot better with it!
He had he last dose of antibiotic yesterday. We still have no idea what caused all the mayhem of the 104 degree temp so the doctors are calling it a viral infection. We will never know.
From a dialysis standpoint, he is doing pretty good. The two days that he was off messed all of his levels up. The nephrology fellow and attending are trying to establish the right perscription that will work best for Max. The machine that Max is on isn't made for infants so they are having to figure out what mixture of fluids they need to put him on that will get his numbers down AND keep the machine happy all at the same time. Unfortunately, it's a very complicated process.
Have a great weekend everyone!!!
He had he last dose of antibiotic yesterday. We still have no idea what caused all the mayhem of the 104 degree temp so the doctors are calling it a viral infection. We will never know.
From a dialysis standpoint, he is doing pretty good. The two days that he was off messed all of his levels up. The nephrology fellow and attending are trying to establish the right perscription that will work best for Max. The machine that Max is on isn't made for infants so they are having to figure out what mixture of fluids they need to put him on that will get his numbers down AND keep the machine happy all at the same time. Unfortunately, it's a very complicated process.
Have a great weekend everyone!!!
September 22, 2008
WOW! That was one very crappy week! I don't even know where to start. As I said on the previous post, Max ended up with a fever as high as 103.8 on Thursday night. They took cultures from his blood, urine, stool, dialysis solution, and upper respiratory system and everything came back negative. The only one we are still waiting on is the stool sample. So needless to say, no one has any idea what caused this madness.
We also had another scare when Max had an increase work of breathing on Friday night into Saturday morning. He was pulling and tugging to get a breath in, so they did a chest x-ray (three of them actually) and it showed fluid around his lungs. It wasn't nearly as much as before but it was still there. So they stopped the dialysis just in case that was the cause. They repeated the x-ray on Sunday and the fluid had decreased and the one this morning showed almost nothing. They are pretty sure it wasn't related to the dialysis, but then again, no one knows why it happened. So, they are restarting the dialysis today at a lower fill volume of 120mL over a 24 hour period. One of his levels jumped pretty high while he was off so they need to get that number down before they start to decrease the time that he is on it.
The entire week has been a complete emotional roller coaster ride! Tim has been working 16+ hour days every day since last Sunday, so he hasn't seen his little man in over a week and it's killing him. I went from filling out discharge papers and getting all of that stuff together to dealing with what in the hell is causing a 104 degree temperature and fluid in his lungs. Unfortunately, we still don't know and probably never will. On a positive note, Max is back to being himself, playing and smiling at everyone that comes to see him. His nurse was out taking care of her other patient when she heard him crying this morning. She said that when she went in to his room his eyes were filled with big crocodile tears, but as soon as she talked to him he smiled. He is a little spoiled when it comes to getting all of the attention from everyone in the RCNIC!
Have a great week everyone!
We also had another scare when Max had an increase work of breathing on Friday night into Saturday morning. He was pulling and tugging to get a breath in, so they did a chest x-ray (three of them actually) and it showed fluid around his lungs. It wasn't nearly as much as before but it was still there. So they stopped the dialysis just in case that was the cause. They repeated the x-ray on Sunday and the fluid had decreased and the one this morning showed almost nothing. They are pretty sure it wasn't related to the dialysis, but then again, no one knows why it happened. So, they are restarting the dialysis today at a lower fill volume of 120mL over a 24 hour period. One of his levels jumped pretty high while he was off so they need to get that number down before they start to decrease the time that he is on it.
The entire week has been a complete emotional roller coaster ride! Tim has been working 16+ hour days every day since last Sunday, so he hasn't seen his little man in over a week and it's killing him. I went from filling out discharge papers and getting all of that stuff together to dealing with what in the hell is causing a 104 degree temperature and fluid in his lungs. Unfortunately, we still don't know and probably never will. On a positive note, Max is back to being himself, playing and smiling at everyone that comes to see him. His nurse was out taking care of her other patient when she heard him crying this morning. She said that when she went in to his room his eyes were filled with big crocodile tears, but as soon as she talked to him he smiled. He is a little spoiled when it comes to getting all of the attention from everyone in the RCNIC!
Have a great week everyone!
September 18, 2008
Max is doing better this morning. He reached a high temperature of 103.8 last night. His nurse undressed him and packed him in cold wash rags to try and get it down. It slowly decreased as the night went on. She said that his body broke out in white and red blotches, but she thinks this was just a reaction to how high his temp was. So this morning when I called his nurse said that his temp was 97.7 and he seemed to be doing better. She thinks that he is achey because when she lifted his arm to get his temp he cried. Although he doesn't like to have his temp taken anyway, but he usually doesn't fuss when you lift his arms either. She did say that he was very fussing during his assessment, but he managed to give out a few smiles afterwards. He was awake when I talked to her and he was stable, so hopefully we are overcoming it!
The doctors have no idea what caused this fever. As of this morning all of the cultures hadn't grown anything and his blood counts were normal. He did have his immunizations on Monday night, but they are not convinced that is what it's from because of how high the fever was. They are also talking about a viral infection, but no one really knows. They will take a renal panel tomorrow morning to see if they want to give another dose of the antiobiotics. The meds that they gave him can work against the kidneys, so they have to make sure that everything is still looking okay before they would repeat anything.
Like I said yesterday, I am not going to post when he is coming home. I will post once he is here, in our living room, so that I don't jinx ourselves for the fifth time. I will keep everyone updated on his progress!
The doctors have no idea what caused this fever. As of this morning all of the cultures hadn't grown anything and his blood counts were normal. He did have his immunizations on Monday night, but they are not convinced that is what it's from because of how high the fever was. They are also talking about a viral infection, but no one really knows. They will take a renal panel tomorrow morning to see if they want to give another dose of the antiobiotics. The meds that they gave him can work against the kidneys, so they have to make sure that everything is still looking okay before they would repeat anything.
Like I said yesterday, I am not going to post when he is coming home. I will post once he is here, in our living room, so that I don't jinx ourselves for the fifth time. I will keep everyone updated on his progress!
Max's Story is online!
Copy and paste the following URL in your search browser and click on Max's name!
http://www.fetalcarecenter.org/patients/stories/default.htm
http://www.fetalcarecenter.org/patients/stories/default.htm
Nevermind :o(
Max isn't come home tomorrow :o( He spiked a 102.9 fever last night and still has it. They are in the process of drawing blood, urine and dialysis cultures to check for infection. They said that they would want to keep him in there for at least 48 hours on an antibiotic and obviously to get his temp down. So maybe early next week if everything comes back negative.
Personally though, I am finished getting excited. I don't know why this crap keeps happening that prevents us from bringing our child home, but I am done getting my hopes up. When he is literally in our living room then I will get excited.
Sorry for the Debbie Downer moment :o(
I will keep you all posted.
Personally though, I am finished getting excited. I don't know why this crap keeps happening that prevents us from bringing our child home, but I am done getting my hopes up. When he is literally in our living room then I will get excited.
Sorry for the Debbie Downer moment :o(
I will keep you all posted.
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