Monday, November 26, 2007
We are GOING HOME!!!!! Current mood: chipper
Yep, that's right! After 6 months of hospitals, Macy Jane is FINALLY being discharged later this afternoon. The wi-fi is down again at the hospital, and I have had no way to update people for the past week. Thankfully the library is allowing me to use the computer in here. I just booked one-way flights for us for TOMORROW! By 2pm tomorrow I should be in Memphis. I am so thrilled and excited and nervous and anxious....all rolled in to one! Of course, for those that know me, I will of course be stopping at El Porton before heading home I cannot wait to get home and let my beautiful daughter enjoy life outside of a hospital.
Please pray for travel safety tomorrow. I specifically booked a flight that has a layover in Phoenix, where I know that there isn't any snow or ice because I do not want anything hindering us getting home! Also, I am nervous about taking MJ that high in the air, but she has had the complete repair so we shouldn't have any trouble with her oxygen levels. Just pray for us that we make it without any problems!!
I will update again, hopefully from my house!!!! It feels wierd saying that considering I have been there probably less than 10 times in the past 6 months. I hope we will get home and not have to go to the hospital for a LONG time.
Thanks for the prayers!!
Much Love,
Bethany
Monday, November 26, 2007
Friday, November 16, 2007
Friday, November 16, 2007
Lord Help Me Current mood: pissed off
Lord Help Me because I am about to scream and shout at the nurse practicioner's, residents, physician assistants, fellows, and doctors. Maybe if I do that and wear bright red and purple polka dots, someone will come in to this room and talk to me face to face and let me know what the heck is going to be done with my daughter's health.
Shot to hell are the plans I had for going home on Friday. Perhaps the Lord is trying to teach me that when I make plans He doesn't like them and that I should give up all hope of going home. Macy Jane is back on a 7 day course of Vancomycin. Why you ask? Because this morning when I changed her dressing on her chest it was blazing blazing red AGAIN and had some pretty nasty drainage on the gauze. I immediately called the nurse who called surgery and asked someone to come and look at it. The fellow came and squeezed it and pushed on it and rubbed it and said that although there isn't any obvious drainage, it definately looks a bit more angry/aggravated than it should. They drew a CBC and CRP.....white count is actually down a smidgen to 17 but the crp went back up to almost 4 (an indicator in babies of inflammation/infection).....so here we go again on antibiotics. Seven days of therapy is next Thursday being the last dose.
The next issue is that Macy Jane is continously throwing up. Most of the time it is projectile and gets all over her and me and anything near her. Other times it is so sudden without warning and it just runs out her mouth on to her clothing. The pediatric surgeons said that her barium swallow and her upper gi show that she is refluxing but she is refluxing above her stomach and they think that ENT doc should be consulted. So the ENT doc came (although they never came in to speak to me which pisses me off.....they are getting paid to do the consult so by golly at least come and show your freaking face to me instead of going through someone else) and said that the problem was not a throat/vocal cord issue but definately a GI issue related to reflux. ENT talked to GI and both of them are supposed to be going to the peds surgeons and basically saying that the Nissen needs to be repaired.
This is where I am frustrated. MJ had the Nissen before and it lasted a little over a month. They are supposed to last for years! If it is going to last for a month again then why put her through the surgery again. On the other hand, she gains weight and now she is losing weight again. She cannot keep going on like this because she is already behind in her growth and needs nutrition to heal properly, which she obviously is NOT doing right now.
I am thoroughly disgusted right now with the whole entire situation. I am tired of the doctors talking outside of our room just enough to where I know they are talking about MJ just from the bits I can hear and then they never come in and talk to me. I just don't get it. Anything you have to say about my child and your opinion....please come in and tell me. I sit in this room day after day and have nothing but time to think about stuff and I would like someone to come in and actually talk to me besides a nurse practicioner. Thank God for the NPs because without them, I feel like nothing would ever get done. Most of the nurses are wonderful but they just simply don't have the time to do what the NPs do.
I am starting to fail to see the purpose in all of this right now. It isn't like I am living a horrible lifestyle where I go out and get drunk, smoke, do drugs etc and God is trying to tell me to change that. I rely on God every single day and pray for His blessings, strength, guidance, and protection but right now I feel as if all of my prayers are not being heard. Is it too much to ask that I be able to take my baby home and give her a somewhat normal life? Heck I will compromise.....I will settle to have her back at Lebonheur just so that I am back in Memphis where at least we have family and friends. I am starting to realize why God let us not have very many visitors in the 3 and 1/2 months we were at LeBonheur......perhaps to prepare us for being out here for so long without anyone except me, steve, and my mom.
Thank the Lord that my dad, sister, brother, and sister-in-law are all flying in on Monday and Steve is flying back tomorrow. I am so ready to see some different faces it isn't even funny. Just to be able to talk to different people about things other than health. I talked to one of my friends on IM last night and it just took my mind away from here for an hour and was wonderful.
Anyways, I don't mean to sound like such a downer, but I have to vent occasionally. God has brought us this far and I know that He isn't going to leave us high and dry. It just gets harder and harder every day when we see or hear of people that were way sicker than MJ getting to go home. In due time I guess. I just don't want her to be a year old and finally getting to go home. That would break my heart.
Please keep us in your prayers. The specific things to pray about:
1. That MJ will stop throwing up as much
2. The doctors will make a final decision about what they are going to do about her unwrapped Nissen.
3. That MJs wound will start to heal again without infection
4. That she will start to gain weight again consistently
5. Save travels for my family
6. Sanity for me.
Thanks ya'll!
Much love,
Bethany
Lord Help Me Current mood: pissed off
Lord Help Me because I am about to scream and shout at the nurse practicioner's, residents, physician assistants, fellows, and doctors. Maybe if I do that and wear bright red and purple polka dots, someone will come in to this room and talk to me face to face and let me know what the heck is going to be done with my daughter's health.
Shot to hell are the plans I had for going home on Friday. Perhaps the Lord is trying to teach me that when I make plans He doesn't like them and that I should give up all hope of going home. Macy Jane is back on a 7 day course of Vancomycin. Why you ask? Because this morning when I changed her dressing on her chest it was blazing blazing red AGAIN and had some pretty nasty drainage on the gauze. I immediately called the nurse who called surgery and asked someone to come and look at it. The fellow came and squeezed it and pushed on it and rubbed it and said that although there isn't any obvious drainage, it definately looks a bit more angry/aggravated than it should. They drew a CBC and CRP.....white count is actually down a smidgen to 17 but the crp went back up to almost 4 (an indicator in babies of inflammation/infection).....so here we go again on antibiotics. Seven days of therapy is next Thursday being the last dose.
The next issue is that Macy Jane is continously throwing up. Most of the time it is projectile and gets all over her and me and anything near her. Other times it is so sudden without warning and it just runs out her mouth on to her clothing. The pediatric surgeons said that her barium swallow and her upper gi show that she is refluxing but she is refluxing above her stomach and they think that ENT doc should be consulted. So the ENT doc came (although they never came in to speak to me which pisses me off.....they are getting paid to do the consult so by golly at least come and show your freaking face to me instead of going through someone else) and said that the problem was not a throat/vocal cord issue but definately a GI issue related to reflux. ENT talked to GI and both of them are supposed to be going to the peds surgeons and basically saying that the Nissen needs to be repaired.
This is where I am frustrated. MJ had the Nissen before and it lasted a little over a month. They are supposed to last for years! If it is going to last for a month again then why put her through the surgery again. On the other hand, she gains weight and now she is losing weight again. She cannot keep going on like this because she is already behind in her growth and needs nutrition to heal properly, which she obviously is NOT doing right now.
I am thoroughly disgusted right now with the whole entire situation. I am tired of the doctors talking outside of our room just enough to where I know they are talking about MJ just from the bits I can hear and then they never come in and talk to me. I just don't get it. Anything you have to say about my child and your opinion....please come in and tell me. I sit in this room day after day and have nothing but time to think about stuff and I would like someone to come in and actually talk to me besides a nurse practicioner. Thank God for the NPs because without them, I feel like nothing would ever get done. Most of the nurses are wonderful but they just simply don't have the time to do what the NPs do.
I am starting to fail to see the purpose in all of this right now. It isn't like I am living a horrible lifestyle where I go out and get drunk, smoke, do drugs etc and God is trying to tell me to change that. I rely on God every single day and pray for His blessings, strength, guidance, and protection but right now I feel as if all of my prayers are not being heard. Is it too much to ask that I be able to take my baby home and give her a somewhat normal life? Heck I will compromise.....I will settle to have her back at Lebonheur just so that I am back in Memphis where at least we have family and friends. I am starting to realize why God let us not have very many visitors in the 3 and 1/2 months we were at LeBonheur......perhaps to prepare us for being out here for so long without anyone except me, steve, and my mom.
Thank the Lord that my dad, sister, brother, and sister-in-law are all flying in on Monday and Steve is flying back tomorrow. I am so ready to see some different faces it isn't even funny. Just to be able to talk to different people about things other than health. I talked to one of my friends on IM last night and it just took my mind away from here for an hour and was wonderful.
Anyways, I don't mean to sound like such a downer, but I have to vent occasionally. God has brought us this far and I know that He isn't going to leave us high and dry. It just gets harder and harder every day when we see or hear of people that were way sicker than MJ getting to go home. In due time I guess. I just don't want her to be a year old and finally getting to go home. That would break my heart.
Please keep us in your prayers. The specific things to pray about:
1. That MJ will stop throwing up as much
2. The doctors will make a final decision about what they are going to do about her unwrapped Nissen.
3. That MJs wound will start to heal again without infection
4. That she will start to gain weight again consistently
5. Save travels for my family
6. Sanity for me.
Thanks ya'll!
Much love,
Bethany
Thursday, November 15, 2007
Thursday, November 15, 2007
The Princess and The Queen Current mood: cranky
The Queen is tired and the Princess is great. That's my blog for today! Thanks for stopping by
Just kidding. 8 days ago we were told that Dr. Hanley wanted MJ to be put on IV antifungal medication because her culture from the 17th of October grew out a type of yeast that LOVES to invade the heart valves, and the infectious disease doctors and cardiologists did not think that it needed to be treated. Dr. Hanley ordered it, so she was put on meds. The infectious disease docs wanted to see what drugs killed the yeast so they ordered a sensitivity test to see. We were told that the sensitivity would take 24-48 hours and if the results came back that she could take fluconazole through her g-tube then they would switch her to that and we could go home.
Well, we JUST got the results yesterday from the lab. What was supposed to be back within 24-48 hours took 7 and 1/2 days! Not only that but infection disease docs changed their story and told us yesterday that they want her to have 7 more days of IV meds and that by mouth meds were not an option. To say that I was pissed would be putting it mildly. We were told one thing and got our hopes up that we would be able to go home this weekend and then a new doctor comes on Monday and completely changes the plan. Also, they want to check her heart, kidneys, liver, and spleen once she finishes up the antifungals to make sure that no fungal spores are there. (they never were there to begin with, thank God--but they want to be sure none migrated there) So, we are here at least until next Wednesday. She will receive her last dose of fluconazole IV on Wednesday night. The nurse practicioner said that we could do her ultrasounds on Wednesday since Thursday was Thanksgiving and that we should be able to hopefully be discharged Thursday, if nothing else goes wrong.
That would be a huge blessing because there are still seats available on the flight that my family members are going home on on Friday. That would mean that we could not only have Thanksgiving together at the Ronald McDonald House with MJ but also that I would not have to pay $300 for a plane ticket for her. We will have plenty of people to hold her on the plane ride! We will see how she does over the next week.
The throwing up seems to be better the past few days. She went through lots of tests on her GI system since I last updated and the conclusion is that her Nissen has come unwrapped. (the surgery that she had to keep her from throwing up) I could have told them that because she has been throwing up since the end of August. Obviously it wasn't functioning right or she wouldn't have thrown up. The decision that we are waiting for now is whether the pediatric general surgeons recommend redoing the Nissen or just seeing how MJ does and hopefully she will outgrow the reflux. We would all like to try managing it medically instead of surgically right now since she has been through so much.
She lost A LOT of weight over the last week. She was up to 11 pounds 9 ounces, which is the most that she has EVER weighed. Then the throwing up started and she dropped all the way down to 10 pounds 15 ounces. However, since Monday, she is back up to 11 pounds 7 ounces. If we can keep the formula in her, she gains 3-4 ounces a day. That is more than an average baby, but she has about 3 pounds to make up to be at the weight that she should be. We will get her there slowly but surely We just have to have faith and lots of patience.
Steve flew home on Tuesday but will be returning on Saturday so that he can spend Thanksgiving with us. I miss him when he isn't here but he desperately needed a break. Thank God my mom is still here!
So, in a nutshell here is the plan. MJ finishes up IV meds on Wednesday. She will have her ultrasounds on Wednesday afternoon. If everything looks good, she will be discharged on Thursday (Turkey Day) with hopes of flying home on Friday, the 23rd. Please pray that she will not have any more setbacks between now and then.
Thanks for all the prayers and by the way the internet is working here again, thank goodness!!
Much Love
Bethany Jane
The Princess and The Queen Current mood: cranky
The Queen is tired and the Princess is great. That's my blog for today! Thanks for stopping by
Just kidding. 8 days ago we were told that Dr. Hanley wanted MJ to be put on IV antifungal medication because her culture from the 17th of October grew out a type of yeast that LOVES to invade the heart valves, and the infectious disease doctors and cardiologists did not think that it needed to be treated. Dr. Hanley ordered it, so she was put on meds. The infectious disease docs wanted to see what drugs killed the yeast so they ordered a sensitivity test to see. We were told that the sensitivity would take 24-48 hours and if the results came back that she could take fluconazole through her g-tube then they would switch her to that and we could go home.
Well, we JUST got the results yesterday from the lab. What was supposed to be back within 24-48 hours took 7 and 1/2 days! Not only that but infection disease docs changed their story and told us yesterday that they want her to have 7 more days of IV meds and that by mouth meds were not an option. To say that I was pissed would be putting it mildly. We were told one thing and got our hopes up that we would be able to go home this weekend and then a new doctor comes on Monday and completely changes the plan. Also, they want to check her heart, kidneys, liver, and spleen once she finishes up the antifungals to make sure that no fungal spores are there. (they never were there to begin with, thank God--but they want to be sure none migrated there) So, we are here at least until next Wednesday. She will receive her last dose of fluconazole IV on Wednesday night. The nurse practicioner said that we could do her ultrasounds on Wednesday since Thursday was Thanksgiving and that we should be able to hopefully be discharged Thursday, if nothing else goes wrong.
That would be a huge blessing because there are still seats available on the flight that my family members are going home on on Friday. That would mean that we could not only have Thanksgiving together at the Ronald McDonald House with MJ but also that I would not have to pay $300 for a plane ticket for her. We will have plenty of people to hold her on the plane ride! We will see how she does over the next week.
The throwing up seems to be better the past few days. She went through lots of tests on her GI system since I last updated and the conclusion is that her Nissen has come unwrapped. (the surgery that she had to keep her from throwing up) I could have told them that because she has been throwing up since the end of August. Obviously it wasn't functioning right or she wouldn't have thrown up. The decision that we are waiting for now is whether the pediatric general surgeons recommend redoing the Nissen or just seeing how MJ does and hopefully she will outgrow the reflux. We would all like to try managing it medically instead of surgically right now since she has been through so much.
She lost A LOT of weight over the last week. She was up to 11 pounds 9 ounces, which is the most that she has EVER weighed. Then the throwing up started and she dropped all the way down to 10 pounds 15 ounces. However, since Monday, she is back up to 11 pounds 7 ounces. If we can keep the formula in her, she gains 3-4 ounces a day. That is more than an average baby, but she has about 3 pounds to make up to be at the weight that she should be. We will get her there slowly but surely We just have to have faith and lots of patience.
Steve flew home on Tuesday but will be returning on Saturday so that he can spend Thanksgiving with us. I miss him when he isn't here but he desperately needed a break. Thank God my mom is still here!
So, in a nutshell here is the plan. MJ finishes up IV meds on Wednesday. She will have her ultrasounds on Wednesday afternoon. If everything looks good, she will be discharged on Thursday (Turkey Day) with hopes of flying home on Friday, the 23rd. Please pray that she will not have any more setbacks between now and then.
Thanks for all the prayers and by the way the internet is working here again, thank goodness!!
Much Love
Bethany Jane
Wednesday, November 7, 2007
Wednesday, November 07, 2007
Overdue Update Current mood: tired
Hey ya'll sorry it has taken so long to update. The wi-fi at the hospital has been down since last week and the stupid Ronald McDonald House has the myspace site blocked.......grrrrrrrrr.
Well, obviously we are not at home. Macy Jane's white blood cell count was still 21,000 after a week's worth of antibiotics so they were trying to figure out where the infection was. Turns out, her incision in the center of her chest is infected pretty bad. It is doing better, but there is a long way to go. The area is about 3 and 1/2 centimeters long and a centimeter wide and it is as deep as the head of a q-tip.......you used to be able to see bone when you looked in to it. We are doing wet-to-dry dressing changes on it and it is slowly looking better. Tonight the PA for surgery is coming by to take a razor to the wound bed and remove all of the white fibrinous tissue that is blocking the healthy tissue growth.....I dread that. In good news though, she is on another 10 day course of antibiotics (they are done in a few days) and her numbers seem to be coming down slowly. We will be able to come home once her incision heals a little more and her numbers return to normal and STAY there without antibiotics. Maybe 2 2 weeks or less? Who knows.....I don't have a goal date anymore.
The other issue that we have been dealing with is her throwing up. She goes in a cycle where she throws up for 1-2 days off and on and then she will go a few days without throwing up. They consulted GI doctors and everything they suggested we unfortunately had to tell them that it had either been done already or it didn't work. They did a gastric emptying study yesterday and she passed that so she empties her stomach in a normal time. Noone knows why she throws up. The cardiologist that is on this week doesn't care that she throws up as long as she gains weight.....the problem was that she started to lose 1-2 ounces a day. However, she is back on track and gaining weight. They changed her formula to something called Elecare (super expensive) and it is supposed to be super easy to digest. We will see. She has an unbelievable amount of gas. One night I pulled 100ml out of her stomach after she was fed. No wonder she throws up and that is even with Mylicon on board. We have started to be more diligent about checking for air and left over food in her tummy. In other news....she took 3 or 4 tiny bites of applesauce yesterday and she also laughed yesterday!!!
Well, the nurse let me borrow her computer to use the internet since people have been texting me to see how she was. I don't know how long it will be before I can update again. They are supposed to be fixing the wi-fi this week. I hope everyone is doing well
Much Love
Bethany
Overdue Update Current mood: tired
Hey ya'll sorry it has taken so long to update. The wi-fi at the hospital has been down since last week and the stupid Ronald McDonald House has the myspace site blocked.......grrrrrrrrr.
Well, obviously we are not at home. Macy Jane's white blood cell count was still 21,000 after a week's worth of antibiotics so they were trying to figure out where the infection was. Turns out, her incision in the center of her chest is infected pretty bad. It is doing better, but there is a long way to go. The area is about 3 and 1/2 centimeters long and a centimeter wide and it is as deep as the head of a q-tip.......you used to be able to see bone when you looked in to it. We are doing wet-to-dry dressing changes on it and it is slowly looking better. Tonight the PA for surgery is coming by to take a razor to the wound bed and remove all of the white fibrinous tissue that is blocking the healthy tissue growth.....I dread that. In good news though, she is on another 10 day course of antibiotics (they are done in a few days) and her numbers seem to be coming down slowly. We will be able to come home once her incision heals a little more and her numbers return to normal and STAY there without antibiotics. Maybe 2 2 weeks or less? Who knows.....I don't have a goal date anymore.
The other issue that we have been dealing with is her throwing up. She goes in a cycle where she throws up for 1-2 days off and on and then she will go a few days without throwing up. They consulted GI doctors and everything they suggested we unfortunately had to tell them that it had either been done already or it didn't work. They did a gastric emptying study yesterday and she passed that so she empties her stomach in a normal time. Noone knows why she throws up. The cardiologist that is on this week doesn't care that she throws up as long as she gains weight.....the problem was that she started to lose 1-2 ounces a day. However, she is back on track and gaining weight. They changed her formula to something called Elecare (super expensive) and it is supposed to be super easy to digest. We will see. She has an unbelievable amount of gas. One night I pulled 100ml out of her stomach after she was fed. No wonder she throws up and that is even with Mylicon on board. We have started to be more diligent about checking for air and left over food in her tummy. In other news....she took 3 or 4 tiny bites of applesauce yesterday and she also laughed yesterday!!!
Well, the nurse let me borrow her computer to use the internet since people have been texting me to see how she was. I don't know how long it will be before I can update again. They are supposed to be fixing the wi-fi this week. I hope everyone is doing well
Much Love
Bethany
Subscribe to:
Posts (Atom)
