For the past few weeks, we haven't had our usual family meeting, mainly because of the holidays. This past Thursday our meeting was cancelled due to a mock code in the PCICU, where almost all Drs and nurses participated. They went over the worst possible scenarios using a robot like doll, about the size of Maia, and simulated real life emergencies. It was very intense and interesting to watch, and good practice for everyone! It reminded us of the times when Maia shut down the entire unit due to all types of procedures that she needed done. We would walk in to see her room full of masked and gowned Drs and nurses and it would be hours before we'd be able to see her! Also, Judith, our social worker who's been the main facilitator of our meetings has been out sick, so it's been a little difficult to get everyone together. So on Friday, I actually got the chance to talk to three Drs (2 ICU attendings and 1 cardiologist) who all updated me on Maia's condition.
All Maia's Drs are pleased to see her doing well, with no major issues and concerns right now. They've decided to go ahead and make some changes, in hopes that she'll continue to take baby steps in the right direction. She has been completely weaned off of her pain meds and is showing no signs of withdrawal. She spiked a low grade fever last week, and after some Tylenol, the fever was gone. She was put on antibiotics for one day and that took care of the recurring infection from her breathing/trach tube. They've also started her on bolus feedings, instead of having her on continuous feeds, since they felt her stomach had gotten smaller and she might tolerate the feeding change better. For Maia, bolus feedings mean feeding her at a faster rate for a certain amount of time, then stopping, then feeding her again. It somewhat simulates a normal healthy baby feeding every few hours. So they changed her feeding tube from an NJ (naseojejunal- tube goes past the stomach into the jejunum), back to an NG (nasogastric- tube goes directly into the stomach). The purpose of this is to eventually have her transition to feeding from a bottle. So in the meantime, the occupational therapist has set up some "cheeky" execises for us to help Maia's mouth and sucking coordination and also her sucking ability. But so far, so good... she has tolerated the change to bolus feedings, taking her fortified breastmilk & formula cocktail every 2-1/2 hours then getting about a 30 minute break before her next feeding. She has spit up a couple of times, which was expected, but nothing to be alarmed about.
The Drs also scheduled an MRI later this week to get a better look at Maia's heart. They said the routine exam before the Glenn (2nd stage heart surgery), is for a heart catherization. However, this involves inserting a dye into the body for more contrast. They've chosen not to do this mainly because Maia's kidneys would have to process the dye and they don't want to put any added stress on her kidneys. So instead, they are following the new protocol at Boston Children's Hospital, the top ranked pediatric hospital for cardiology. At Boston, they have now started to do MRIs instead of heart catherizations for babies and kids as a pre-Glenn procedure. So Maia is tentatively scheduled for her MRI on Thursday this week. Unfortunately, she will have to be sedated again to have this done. This MRI will give the Drs a better look at her heart, as opposed to the regular monthly echocardiograms she's been getting. They'll be able to get a more detailed look at how her heart and the surrounding vessels are doing, and if she's beginning to outgrow the changes done from her first heart surgery. The hope is that everything is working well and that they'll be able to postpone her Glenn surgery for a few months. Most HLHS babies are ready for their Glenn at around 4 to 6 months old. Maia is already 4-1/2 months old so they are hoping to hold off on the next open heart surgery, to give her kidneys more time to recover, and for Maia to be able to grow more and get stronger.
The nurses have also encouraged us to become more involved in Maia's care, because eventually we'll have to do some of these things at home. First we watched them change her trach ties, which is changed daily. Then we watched them change her trach tube, which is changed weekly. It looked extremely difficult! It's a minimum 2 person job and with Maia not having much of a neck right now, it makes it very tough! So we told the nurses that we'll be watching for now! I also got the chance to suction her by myself. It was pretty easy, just a little uncomfortable because it causes her to cough, which is a good thing! I'm actually ok with doing it because it's simple enough for me and doesn't seem to cause Maia any pain! So I guess I've been somewhat promoted to doing more than just diaper changes! We also got the chance to shampoo her hair! It was very exciting and fun for us!... and Maia loves it! So now we can look forward to being more hands on with her.
I was looking back at some older pics of Maia from earlier blog posts... and she has really grown!!! I think sometimes it's harder for me to notice since I see her every day, so looking at her older pics, I realize and can see how much she's overcome and how much she's changed! Her little body has been through so much but throughout her recovery, she's had the same look in her eyes... her fighting spirit has always been there and has never wavered! It's truly amazing and miraculous to see her timeline of pics and see the progression in her recovery. I think I'm going to see if I can put together a little slideshow of her pics... a little project for me to work on! Every day is a gift from God and we are not taking anything for granted! Both our little girls, Maia and big sister Marissa, have taught us to live in the moment and make the best out of every situation!... Please continue to pray for her, as we are all so grateful for everyone's prayers and the show of support we've received from everyone! All the positive thoughts and kind words are deeply felt and appreciated by both our family and Maia herself! Thank you again for riding along and taking this adventure with us, and we welcome those who've just joined the ride!
All Maia's Drs are pleased to see her doing well, with no major issues and concerns right now. They've decided to go ahead and make some changes, in hopes that she'll continue to take baby steps in the right direction. She has been completely weaned off of her pain meds and is showing no signs of withdrawal. She spiked a low grade fever last week, and after some Tylenol, the fever was gone. She was put on antibiotics for one day and that took care of the recurring infection from her breathing/trach tube. They've also started her on bolus feedings, instead of having her on continuous feeds, since they felt her stomach had gotten smaller and she might tolerate the feeding change better. For Maia, bolus feedings mean feeding her at a faster rate for a certain amount of time, then stopping, then feeding her again. It somewhat simulates a normal healthy baby feeding every few hours. So they changed her feeding tube from an NJ (naseojejunal- tube goes past the stomach into the jejunum), back to an NG (nasogastric- tube goes directly into the stomach). The purpose of this is to eventually have her transition to feeding from a bottle. So in the meantime, the occupational therapist has set up some "cheeky" execises for us to help Maia's mouth and sucking coordination and also her sucking ability. But so far, so good... she has tolerated the change to bolus feedings, taking her fortified breastmilk & formula cocktail every 2-1/2 hours then getting about a 30 minute break before her next feeding. She has spit up a couple of times, which was expected, but nothing to be alarmed about.
The Drs also scheduled an MRI later this week to get a better look at Maia's heart. They said the routine exam before the Glenn (2nd stage heart surgery), is for a heart catherization. However, this involves inserting a dye into the body for more contrast. They've chosen not to do this mainly because Maia's kidneys would have to process the dye and they don't want to put any added stress on her kidneys. So instead, they are following the new protocol at Boston Children's Hospital, the top ranked pediatric hospital for cardiology. At Boston, they have now started to do MRIs instead of heart catherizations for babies and kids as a pre-Glenn procedure. So Maia is tentatively scheduled for her MRI on Thursday this week. Unfortunately, she will have to be sedated again to have this done. This MRI will give the Drs a better look at her heart, as opposed to the regular monthly echocardiograms she's been getting. They'll be able to get a more detailed look at how her heart and the surrounding vessels are doing, and if she's beginning to outgrow the changes done from her first heart surgery. The hope is that everything is working well and that they'll be able to postpone her Glenn surgery for a few months. Most HLHS babies are ready for their Glenn at around 4 to 6 months old. Maia is already 4-1/2 months old so they are hoping to hold off on the next open heart surgery, to give her kidneys more time to recover, and for Maia to be able to grow more and get stronger.
The nurses have also encouraged us to become more involved in Maia's care, because eventually we'll have to do some of these things at home. First we watched them change her trach ties, which is changed daily. Then we watched them change her trach tube, which is changed weekly. It looked extremely difficult! It's a minimum 2 person job and with Maia not having much of a neck right now, it makes it very tough! So we told the nurses that we'll be watching for now! I also got the chance to suction her by myself. It was pretty easy, just a little uncomfortable because it causes her to cough, which is a good thing! I'm actually ok with doing it because it's simple enough for me and doesn't seem to cause Maia any pain! So I guess I've been somewhat promoted to doing more than just diaper changes! We also got the chance to shampoo her hair! It was very exciting and fun for us!... and Maia loves it! So now we can look forward to being more hands on with her.
I was looking back at some older pics of Maia from earlier blog posts... and she has really grown!!! I think sometimes it's harder for me to notice since I see her every day, so looking at her older pics, I realize and can see how much she's overcome and how much she's changed! Her little body has been through so much but throughout her recovery, she's had the same look in her eyes... her fighting spirit has always been there and has never wavered! It's truly amazing and miraculous to see her timeline of pics and see the progression in her recovery. I think I'm going to see if I can put together a little slideshow of her pics... a little project for me to work on! Every day is a gift from God and we are not taking anything for granted! Both our little girls, Maia and big sister Marissa, have taught us to live in the moment and make the best out of every situation!... Please continue to pray for her, as we are all so grateful for everyone's prayers and the show of support we've received from everyone! All the positive thoughts and kind words are deeply felt and appreciated by both our family and Maia herself! Thank you again for riding along and taking this adventure with us, and we welcome those who've just joined the ride!
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