Time after time
It has been a while since I have updated yall. This will be told from my perspective rather that Frida Sofia's. I don't want to jinks it but it has been amazing to finally be home for this long. We do have weekly cardiology and gastroenterologist to check her heart and weight gain, but we are home. Frida gave everyone in Children's Memorial Hermann a big scare with her heart function. They really do not want to take any chances.
Updates in July:
After Frida was released from Children's Memorial Hermann Eduardo and I were so excited. She went home with 8 medications which wasn't ideal , but she was home. I am so glad she has a g-tube because just imagine trying to give an infant so many medications. The night we got home I started to have really bad back pains. They progressed through out the week. I took pain meds, went to an emergency clinic, and finally the ER. We honestly cant catch a break. I was in the hospital for 4 days. The longest 4 days of my life because I couldn't see Frida. She couldn't be in the hospital to avoid her catching a virus or infection. She still had poor heart failure and adding a simple virus/ runny nose/ cough could be what would send her back to the medical center. Eduardo took care of Frida the whole weekend; fed her, gave all medications, changed her, and kept her entertained. It doesn't seem too too much but reality is that Frida already likes to keep her daddy on his toes. For some reason she doesn't just nap for him haha. She has to be held, swaddled, rocked, hold the paci in her mouth, and make they shhhh sound. He is really in for it when she's only this little. A few things I learned from this is that I am truly lucky to have Eduardo by my side. Day to day I really don't know what I would do without him. He goes above and beyond for us. Another thing DO NOT go to an ER on the weekends. Staff is limited (nurses, doctors, and other medical staff) especially when you are in the outskirts of the city (Cypress). You would think that people on Mondays are in a bad mood or no desire to work? You haven't met those who work on Sundays. Really bad experience! hopefully there isn't a next time, but if there is I will just go to the medical center. Everyone is there!
Background info. The reason I didn't was because they treated me there when Frida was born and honestly labor and delivery is AMAZING there!!! They already had my history and didn't have to transfer files, fill extra paper work. etc. With so many MRI, CT scan, X-rays, ultrasound (no baby) they found that I had gallbladder stones. What made it critical was that I had so many and some were starting to go to my liver and some were in my pancreas. It should have been an in and out procedure but it wasn't. Long story short I couldn't eat or drink for 4 days, was on morphine, finally they had one procedure done on Sunday took my gallbladder out Monday. As soon as I could walk and got prescribed medication pills I went home. I could not be another day or I would go crazy. Oh and it affected my milk supply.
Updates for August:
It has been a total roller coaster. Some days I can barely keep my head above water and others are so amazing. The original plan was for Frida to go in for a catheter to check her heart and see if they aren't missing anything that isn't showing on her weekly echos. From there they would set a date for her Glenn. Well that cath took 5 hours! She now has a stent and they had to balloon a clip she had on her sano which was the reason why she was having low oxygen saturations. Her oxygen saturations should be between 75 to 85; yours and my oxygen sats should be above 90. After the procedure her sats should have gone up but they did the opposite. She was on oxygen and constantly trying to take her nasal cannula off. She's a stinker. After a few days of waiting to see if her body would recover on its own they had to give her a blood transfusion. That is 4 in her life now that she has had. I don't know why but I really dislike them, but thank you to all those who donate! Frida has really benefited by them. We came home the day after, no oxygen, still 8 medications, and with the goal that her Glenn would be done in a month.
Well Frida's heart has other plans. According to her cardiologist they would feel more comfortable with doing another catheter in a few weeks to see how her heart and lungs look like then. Her lungs aren't ready for the next open heart surgery. If they were to do the surgery her lungs would work against the heart surgery. Its really heard to hear that your child heart function is poor and the surgery to help take some of the pressure off the right ventricle (which is currently doing the job of the left and right ventricle) wouldn't be successful because the lungs would work against it. Its honestly hard. waiting until they mature is the only option with a new medication to help. Now we are just waiting, waiting, and waiting. While we wait my current job cannot extend my leave any further which I cannot blame them because its been almost 5 months. If I don't return Frida wont have medical insurance. I know what you are thinking Medicare. Well I've applied and still waiting the approval of her ssi. Her SSI will give her a special medicare that is for her syndrome, but the only bad thing is that they take up to 6 months to decide.... October needs to come soon enough.
So that is where we are right now. Playing the waiting game, keeping her as healthy as possible, struggling to find a sitter so I can return to work to keep insurance which doesn't cover private home nurses (that's another story), and trying to give Frida Sofia a normal infant life that she missed out on her first 3 months of life being stuck in a hospital.
Shout out to you for reading all of this and still worrying about our little ones journey. If you feel you are healthy and want to come visit you are more than welcome. She loves to see new faces. She literally stares people down in the elevator when we go to her doctor visits! Elevator etiquette will definitely be a discussion I will need to have once she is able to understand.
Updates in July:
After Frida was released from Children's Memorial Hermann Eduardo and I were so excited. She went home with 8 medications which wasn't ideal , but she was home. I am so glad she has a g-tube because just imagine trying to give an infant so many medications. The night we got home I started to have really bad back pains. They progressed through out the week. I took pain meds, went to an emergency clinic, and finally the ER. We honestly cant catch a break. I was in the hospital for 4 days. The longest 4 days of my life because I couldn't see Frida. She couldn't be in the hospital to avoid her catching a virus or infection. She still had poor heart failure and adding a simple virus/ runny nose/ cough could be what would send her back to the medical center. Eduardo took care of Frida the whole weekend; fed her, gave all medications, changed her, and kept her entertained. It doesn't seem too too much but reality is that Frida already likes to keep her daddy on his toes. For some reason she doesn't just nap for him haha. She has to be held, swaddled, rocked, hold the paci in her mouth, and make they shhhh sound. He is really in for it when she's only this little. A few things I learned from this is that I am truly lucky to have Eduardo by my side. Day to day I really don't know what I would do without him. He goes above and beyond for us. Another thing DO NOT go to an ER on the weekends. Staff is limited (nurses, doctors, and other medical staff) especially when you are in the outskirts of the city (Cypress). You would think that people on Mondays are in a bad mood or no desire to work? You haven't met those who work on Sundays. Really bad experience! hopefully there isn't a next time, but if there is I will just go to the medical center. Everyone is there!
Background info. The reason I didn't was because they treated me there when Frida was born and honestly labor and delivery is AMAZING there!!! They already had my history and didn't have to transfer files, fill extra paper work. etc. With so many MRI, CT scan, X-rays, ultrasound (no baby) they found that I had gallbladder stones. What made it critical was that I had so many and some were starting to go to my liver and some were in my pancreas. It should have been an in and out procedure but it wasn't. Long story short I couldn't eat or drink for 4 days, was on morphine, finally they had one procedure done on Sunday took my gallbladder out Monday. As soon as I could walk and got prescribed medication pills I went home. I could not be another day or I would go crazy. Oh and it affected my milk supply.
Updates for August:
It has been a total roller coaster. Some days I can barely keep my head above water and others are so amazing. The original plan was for Frida to go in for a catheter to check her heart and see if they aren't missing anything that isn't showing on her weekly echos. From there they would set a date for her Glenn. Well that cath took 5 hours! She now has a stent and they had to balloon a clip she had on her sano which was the reason why she was having low oxygen saturations. Her oxygen saturations should be between 75 to 85; yours and my oxygen sats should be above 90. After the procedure her sats should have gone up but they did the opposite. She was on oxygen and constantly trying to take her nasal cannula off. She's a stinker. After a few days of waiting to see if her body would recover on its own they had to give her a blood transfusion. That is 4 in her life now that she has had. I don't know why but I really dislike them, but thank you to all those who donate! Frida has really benefited by them. We came home the day after, no oxygen, still 8 medications, and with the goal that her Glenn would be done in a month.
Well Frida's heart has other plans. According to her cardiologist they would feel more comfortable with doing another catheter in a few weeks to see how her heart and lungs look like then. Her lungs aren't ready for the next open heart surgery. If they were to do the surgery her lungs would work against the heart surgery. Its really heard to hear that your child heart function is poor and the surgery to help take some of the pressure off the right ventricle (which is currently doing the job of the left and right ventricle) wouldn't be successful because the lungs would work against it. Its honestly hard. waiting until they mature is the only option with a new medication to help. Now we are just waiting, waiting, and waiting. While we wait my current job cannot extend my leave any further which I cannot blame them because its been almost 5 months. If I don't return Frida wont have medical insurance. I know what you are thinking Medicare. Well I've applied and still waiting the approval of her ssi. Her SSI will give her a special medicare that is for her syndrome, but the only bad thing is that they take up to 6 months to decide.... October needs to come soon enough.
So that is where we are right now. Playing the waiting game, keeping her as healthy as possible, struggling to find a sitter so I can return to work to keep insurance which doesn't cover private home nurses (that's another story), and trying to give Frida Sofia a normal infant life that she missed out on her first 3 months of life being stuck in a hospital.
Shout out to you for reading all of this and still worrying about our little ones journey. If you feel you are healthy and want to come visit you are more than welcome. She loves to see new faces. She literally stares people down in the elevator when we go to her doctor visits! Elevator etiquette will definitely be a discussion I will need to have once she is able to understand.
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