Thursday aka "Friday Eve," turned out to be a day of firsts for us... I got the chance to change my first poopy diaper! It's been a while so I got kind of nervous! I wasn't expecting to do it, but the nurse said to go ahead. Since she hasn't been peeing, I knew it was a poopy diaper. Maia is still a bit swollen down there so it was somewhat of a challenge to make sure I cleaned her up thoroughly and quickly because she was getting mad and wanting to move around. But I got it done, woo hoo! =)
We also had our weekly meeting with the doctors and nurses yesterday. Although we had Marcus with us, Thursday is Bingo day at the hospital, so patients and siblings can hang out in the playroom. So while Marcus was having fun, we were surrounded by all kinds of seriousness.... We were updated on Maia's condition by one of the heart doctors, a PCICU fellow, who turned out to be a glass half empty kind of doctor. Maia had been continuing her baby steps until she got the infection a few days ago and was given antibiotics. After making adjustments on her meds and ventilator on Monday, they were surprised how well she was doing on Tuesday, considering her overall condition. For now they will keep her on the antibiotics for the next week or so just to be safe and make sure the infection is completely gone. Then the topic turned to her kidneys. Maia's kidneys are still not making any urine, so they need to keep her on the peritoneal dialysis. She is basically back to how she was before getting the infection, which is both good and bad. Maia is stable, considering how sick she is and what she's already been through, but this cardiologist is afraid that the longer her kidneys don't work correctly, it increases the chance of them not working at all... and in the long run, he said it would most likely go downhill from there, with us having to consider a kidney transplant, and even death. I was actually kind of shocked at the negative disposition he had. I know that death is always in the picture, especially when dealing with a baby that's not healthy, but I just think it's way too early to be thinking about it. It's part of the doctor's job to keep us informed and look at the big picture of our situation, but it almost seemed like he wasn't giving Maia a chance! It turned into such a negative discussion and kind of ended that way too, which seemed confusing since the renal (kidney) doctor that checked on Maia the other day told us that the kidneys are the most stubborn system and it takes a while to get it going... and that's why we were all taking things day by day, because it's hard to predict the future right now. I guess it wasn't just us that found the tone of the meeting a bit on the negative side... the social worker came up to me afterwards and felt the need to apologize for the way things things went. I basically told her that we know it's just a part of the situation were in. Maia is sick, that's why she's in the hospital and that we're used to hearing negative information from what happened last year, but it doesn't necessarily change things for us. We are still positive and hoping for the best. Everything will work out the way they're meant to be.... Each baby has a different time table when it comes to recovery and Maia seems to be a stubborn little patient! We just need to wait for her kidneys to wake up and get her to pee! It all sounds so easy and I realize now it's something most of us take for granted!
At the end of the meeting, one of the nurses suggested we hold Maia, since she's stable now and she doesn't have too many things connected to her. Everyone agreed it would be a good thing and it could only help her... especially Gordon, since he hasn't gotten the chance to hold Maia yet! So the team of nurses made it happen. After carefully arranging the wires and lines, and the breathing tube, they got everything ready, including positioning Gordon in a chair with pillows on his lap for added support. Then they carefully placed Maia in his arms... Gordon looked a lil nervous but they both did good, and Maia was so relaxed she fell asleep right away! I went down to the playroom to get Marcus, but he was too busy learning to play "Madden!" So I went back to Maia's room without him. Since we weren't sure how much "holding time" we were going to get with her tonight, Gordon didn't want to take up all the time and gave me some time to hold her again... and Marcus eventually joined the fun when the playroom closed! Marcus kept playing with her hair and giving her kisses, so she woke up and opened her eyes, just as she usually does when he's around! It was a moment we all enjoyed!
We also had our weekly meeting with the doctors and nurses yesterday. Although we had Marcus with us, Thursday is Bingo day at the hospital, so patients and siblings can hang out in the playroom. So while Marcus was having fun, we were surrounded by all kinds of seriousness.... We were updated on Maia's condition by one of the heart doctors, a PCICU fellow, who turned out to be a glass half empty kind of doctor. Maia had been continuing her baby steps until she got the infection a few days ago and was given antibiotics. After making adjustments on her meds and ventilator on Monday, they were surprised how well she was doing on Tuesday, considering her overall condition. For now they will keep her on the antibiotics for the next week or so just to be safe and make sure the infection is completely gone. Then the topic turned to her kidneys. Maia's kidneys are still not making any urine, so they need to keep her on the peritoneal dialysis. She is basically back to how she was before getting the infection, which is both good and bad. Maia is stable, considering how sick she is and what she's already been through, but this cardiologist is afraid that the longer her kidneys don't work correctly, it increases the chance of them not working at all... and in the long run, he said it would most likely go downhill from there, with us having to consider a kidney transplant, and even death. I was actually kind of shocked at the negative disposition he had. I know that death is always in the picture, especially when dealing with a baby that's not healthy, but I just think it's way too early to be thinking about it. It's part of the doctor's job to keep us informed and look at the big picture of our situation, but it almost seemed like he wasn't giving Maia a chance! It turned into such a negative discussion and kind of ended that way too, which seemed confusing since the renal (kidney) doctor that checked on Maia the other day told us that the kidneys are the most stubborn system and it takes a while to get it going... and that's why we were all taking things day by day, because it's hard to predict the future right now. I guess it wasn't just us that found the tone of the meeting a bit on the negative side... the social worker came up to me afterwards and felt the need to apologize for the way things things went. I basically told her that we know it's just a part of the situation were in. Maia is sick, that's why she's in the hospital and that we're used to hearing negative information from what happened last year, but it doesn't necessarily change things for us. We are still positive and hoping for the best. Everything will work out the way they're meant to be.... Each baby has a different time table when it comes to recovery and Maia seems to be a stubborn little patient! We just need to wait for her kidneys to wake up and get her to pee! It all sounds so easy and I realize now it's something most of us take for granted!
At the end of the meeting, one of the nurses suggested we hold Maia, since she's stable now and she doesn't have too many things connected to her. Everyone agreed it would be a good thing and it could only help her... especially Gordon, since he hasn't gotten the chance to hold Maia yet! So the team of nurses made it happen. After carefully arranging the wires and lines, and the breathing tube, they got everything ready, including positioning Gordon in a chair with pillows on his lap for added support. Then they carefully placed Maia in his arms... Gordon looked a lil nervous but they both did good, and Maia was so relaxed she fell asleep right away! I went down to the playroom to get Marcus, but he was too busy learning to play "Madden!" So I went back to Maia's room without him. Since we weren't sure how much "holding time" we were going to get with her tonight, Gordon didn't want to take up all the time and gave me some time to hold her again... and Marcus eventually joined the fun when the playroom closed! Marcus kept playing with her hair and giving her kisses, so she woke up and opened her eyes, just as she usually does when he's around! It was a moment we all enjoyed!
I am glad that you all got to hold her! I cried when I read this. I didn't know that she was sick, I am sorry. I know what you mean by a negative doctor. My daughter's original oncologist was extremely negative. She was worse than my mother-in-law! After months of everyone apologizing for her bedside manner, a nurse took me aside and told me that I could switch doctors. Is that an option for you? I know that switching doctors for us made a huge difference in Cassie's recovery because my husband and I were happier. Just if you take the advice make sure that the new doctor is capable and paid for by your insurance. I will pray for her and your family.
ReplyDeleteHi Shanon, good to hear from you!... Thanks for your input. I'm not sure if switching is an option for us, but we actually have a great team of doctors. I think that particular Dr. happened to be the one on duty at that time, so he attended our meeting. We've talked to him before and he hasn't always been that way. Overall, we are very happy with the treatment and care that Maia continues to receive from all her doctors and nurses.
DeleteHi Rizza, Gordon, and Marcus,
ReplyDeleteThank you so much for keeping everyone posted about Maia. We do not always comment because we (at least I) do not always know what to say. I have never been in a situation like yours. I will say that we LOVE all of you and PRAY with sincere hearts everyday for Maia. May God keep you in His care and fill you with peace and hope.
Hi Sister!... no worries, we completely understand! Thanks again for all your prayers. For the past couple of years we've come across situations daily where people feel awkward about what to say to us and end up not saying anything at all... we sometimes encourage people to talk to us since we're open to discussing anything that's on their minds, no matter how uncomfortable! Many people think we don't want to talk about certain things because it makes us sad, and many times we don't even see things that way... so don't be shy! =)
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