Saturday, August 2, 2014
It's been difficult to think back to that Saturday morning, but yet our minds drift back to what happened so easily... reliving that day is almost too easy! It was a reality check, an obvious reminder of how fragile life is.
It started out a typical Saturday morning for us as we arrived at the hospital after 9:00am. Before heading into Maia's room, we stopped in the family kitchen to call and check on the little old lady that hit our car the day before. Gordon talked to her and she said she was all right, and we reassured her that we were also ok, but it was hard for her to talk on the phone because she had difficulty hearing. So she said she'd have her daughter call us back.
We headed in to see Maia and everything seemed fine. We were just getting settled in, putting all our things down and rearranging the chairs in the room. Within about 5 minutes, Maia's heart rate began to slowly go down, along with her blood pressure and oxygen sats. It didn't seem too serious at first until the nurse mentioned that this was the third time Maia has done this in the last several hours. Then the next thing I know, nurses and Drs flooded her room... and for the first time in a long time, I was actually worried and scared. Tears began rolling down my cheeks and I told Gordon that we should step outside because I felt we were in the way. So as the nurses and Drs did their thing, we patiently watched from outside Maia's room. She was having another "party" in her room, as we like to say. But this time it was different.
There was a sense of urgency with this particular party. The orange emergency bag was brought in... we've seen this bag numerous times whenever a procedure is done, or when Maia travels out of her room to the operating room. But this was the first time I've seen the bag open and ready. A table was set up with cardiac arrest related meds and equipment. The room across from Maia was empty so the Drs, along with the social worker, brought us in there to talk. The day before, we had ourpoll usual family meeting with Dr. Sandrijn, one of the critical care ICU attendings, and she mentioned that down the line, we should be making decisions regarding Maia's care, whether to be more aggressive or back off some of her treatments. Little did we all know, decisions would be made that following day! They wanted us to know what all our options were, however, a decision needed to be made now... Maia had already had 2 of these moments in which her heart seemed to slow down, which brought down her blood pressure and oxygen sats. This was extremely alarming because it could mean that her heart, which was the main organ keeping her strong through everything else, was now beginning to show signs of needing help... the Drs were afraid that all of Maia's complications were beginning to take a toll on her heart, and she needed help now. I will forever remember the Dr.'s words "... if we don't do something now, she might not make it through the night."
The Drs asked if we wanted to put her back on life support, the ECLS/ECMO circuit. She had just been taken off the circuit about 2 weeks prior to all of this. Since we believed it was necessary to save her life by putting her back on life support, we agreed to go ahead and do it. So Dr. Neil Cambronero, one of the cardiac surgeons, told us they would go ahead and start setting up in Maia's room, since they thought it was too risky to have her make the trip to the OR. The same type of cannulas that were used last time, would again be placed into her neck. However, after about 20 minutes, the plan changed... we had another meeting with the Drs, who informed us that Maia's team of Drs were all texting and calling in with their opinions. They all agreed that putting Maia back on the ECLS circuit would do more harm than good. They explained that with Maia's physiology, their would be no benefit to put her back on life support. Which is why after 2 weeks on the ECLS circuit, mainly for lung support, her lungs did not improve like the Drs had originally hoped. So they expected the same thing to happen if we were to put her back on the circuit. So after everything was thoroughly explained to us, we decided against putting her back on life support. The Drs made sure we understood that this didn't mean any of them were giving up. We all would continue to fight for Maia and the Drs would continue to do everything they can, we just all agreed we wouldn't put her back on life support... they also brought up the fact that if Maia was on the circuit, and something were to happen, we would not be able to hold her, which is something they all felt Maia, and us, deserved... and if it came down to it, we made sure to let them know, that we did not want Maia to suffer. If her heart stops beating, we did not want any chest compressions done, or any electrical shocks to her heart. She has already been through so much, and survived so much, that if her heart stopped beating, it was a sign from Maia that she was done... that she gave it her all, that she was tired, and it was time for her to rest.
As the party continued in Maia's room, we continued our discussion with her Drs in the empty room across from Maia's. Dr. Sandrijn suggested we try a steroid treatment. It was something she had been thinking about bringing up to Maia's team of Drs, and now would be an opportune time, since there is a risk of infection and Maia was already taking antibiotics. Although there is no proven research that this would help Maia's lungs, the logical thinking behind steroids is that it helps to reduce inflammation. If there is any inflammation in Maia's lungs that is causing her lungs to stay collapsed, the steroids would help. So we were on board with this aggressive form of treatment. They also let us know that they were more than willing to think out of the box when it comes to Maia. There is no other baby like her, so they honestly don't know what to expect when it comes to her and the treatments they've done and will try and do. Maia is very unpredictable and does not go by the book... she is writing her own book! We then began to end this highly emotional meeting with some personal thoughts and words of encouragement... we first thanked Maia's team of Drs and nurses. There really aren't enough words to describe what they have done, and what they continue to do. Saying "thank you" is just an outrageous understatement. And as if I wasn't crying enough that morning, the Drs thanked us... for inspiring them, the nurses, the entire staff, and everyone around us. They said we make their job easy, we help make taking care of Maia easy by always being positive, and that it has rubbed off and affected everyone in the unit. Then the unexpected happened... the Drs began to cry, as they told us how they too want the best for Maia, how they also want her to continue to fight, and that they would fight also... how it was impossible for them to not get attached because they've cared for her and watched her grow and survive for almost a year now. It was truly a humbling experience.
After Maia was stable we were able to go back into her room. She was now on heart meds, Epinephrine and Dopamine, to help her blood pressure, and the steroids were also started. Her vent settings were increased for more support and her nitric was increased to 20. She was sedated to help her rest, and the Drs continuously tweaked her dosages of her sedative Dex (dexmedetomidine), along with her heart meds and diuretics, until they could find the right combination that was both effective and made her happy. Her feeds were stopped and she was eventually switched to an IV drip of TPN (total parenteral nutrition). All these extra meds means more fluid intake for an already edematous Maia, so Drs had some of her meds concentrated to reduce the volume of the fluids she's taking in.I They also changed her diuretic from Lasix (furosemide) to Bumex (bumetanide), for the same purpose of switching to a more potent concentrated dosage.
Meanwhile, Gordon spent the next several hours trying to get a hold of family and friends, to personally let them know what was going on with Maia. I also decided to put up a post on Facebook to update everyone and ask for prayers, it couldn't hurt! Gordon made calls and sent out texts, encouraging family and friends to visit since we didn't know what was going to happen. We tried not to sound desperate and give too much detail, however, we did want to inform them about Maia, and have them visit, especially if they had never met her. Another one of our concerns was my parents, who had plans for an overnight trip to Monterey with my dad's cousins who were visiting. We didn't want them to cancel or change their plans, but we didn't want to leave them completely in the dark about Maia. More importantly, we didn't want them to worry and focus on the negative things that could happen, which they are very good at doing. We were determined to focus on the positive, just like we always do. So my brother picked them up and brought them to the hospital, along with Marcus, who was spending the day with his Nino Dada. We let them know that Maia had gotten sicker, but was stable for now. We also didn't give too much information to Marcus because we didn't want to scare him. Their visit at the hospital was short and sweet, which worked out fine. They were able to see Maia before going out of town. Marcus seemed to sense that something wasn't right and somewhat avoided Maia, as he played with his Legos.
As the day went on, we had more visitors come through... almost all shed tears as we described what went on that morning. We also received countless texts and calls, offering prayers, support, and words of encouragement. During the next few days, more family and friends came to visit, and as much as we enjoyed seeing everyone, it was as if Maia loved it even more!!
It's been over a week now since that Saturday... and Maia seems to be responding well to both her meds and seeing new faces that love and care for her. She is slowly being weaned off of the vent and all her meds, including the steroids. She continues to get regular x-rays to check her lungs and it was a pleasant surprise to see some improvement after a few days of being on the steroids. Drs still aren't sure how the steroids played a part in all of this. Maia seems to like her blood pressure on the higher side, which keeps her oxygen sats up. However, when she gets mad and agitated, her sats go down and her CO2 goes up... a bad combination. So it's important to keep her happy and relaxed, which gets pretty complicated when trying to wean her off meds. Plus, she's also teething... something we all seem to forget amidst the other priorities! So part of her fussiness and irritation can simply be explained because of teeth! Her vent settings have gone down considerably and she's requiring less vent support. She's also been weaned off of the nitric since her drama on Saturday, but she still has a long way to go in the respiratory department, especially with her collapsed lungs and ARDS (acute respiratory distress syndrome). With the help of her diuretics, she is less swollen now, but they've had to adjust the dosage several times because they don't want to stress out her already fragile kidneys. She's been peeing so much that they've had to give her extra potassium at times. We would occasionally joke that this all started when one of her nurses put many tiny braids in her hair and this was all just a bad reaction to her not liking the braids! We kept them in for several days, but they were starting to remind me of Coolio, and they were looking like dreadlocks so we took them out Sunday. Since then, Maia is doing much better! But in reality, in the big picture, she's made little progress considering all her setbacks. But she's showing signs of improvement... no matter how tiny the steps she's making, they are steps forward, and a sign that she wants to continue the fight.
Once again, we want to thank everyone for the outpouring of love, support and prayers... during both the good times and the difficult times. Many of you have told us that it's been hard to express whatever you're feeling and we want you to know that it's ok... just be yourself... our circumstances may have changed but we haven't! We are aware that anything can happen and we are accepting of whatever God has planned for us and Maia. So as I mentioned earlier, we're encouraging family and friends to visit. We feel it's brought renewed strength to Maia to see the faces of those that love and care for her... to know who is fighting right along with her.
Jeremiah 29:11
For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.
It's been difficult to think back to that Saturday morning, but yet our minds drift back to what happened so easily... reliving that day is almost too easy! It was a reality check, an obvious reminder of how fragile life is.
 |
| The perfect combination of Princess & Warrior |
It started out a typical Saturday morning for us as we arrived at the hospital after 9:00am. Before heading into Maia's room, we stopped in the family kitchen to call and check on the little old lady that hit our car the day before. Gordon talked to her and she said she was all right, and we reassured her that we were also ok, but it was hard for her to talk on the phone because she had difficulty hearing. So she said she'd have her daughter call us back.
We headed in to see Maia and everything seemed fine. We were just getting settled in, putting all our things down and rearranging the chairs in the room. Within about 5 minutes, Maia's heart rate began to slowly go down, along with her blood pressure and oxygen sats. It didn't seem too serious at first until the nurse mentioned that this was the third time Maia has done this in the last several hours. Then the next thing I know, nurses and Drs flooded her room... and for the first time in a long time, I was actually worried and scared. Tears began rolling down my cheeks and I told Gordon that we should step outside because I felt we were in the way. So as the nurses and Drs did their thing, we patiently watched from outside Maia's room. She was having another "party" in her room, as we like to say. But this time it was different.
 |
| Maia and her new monkey pal |
There was a sense of urgency with this particular party. The orange emergency bag was brought in... we've seen this bag numerous times whenever a procedure is done, or when Maia travels out of her room to the operating room. But this was the first time I've seen the bag open and ready. A table was set up with cardiac arrest related meds and equipment. The room across from Maia was empty so the Drs, along with the social worker, brought us in there to talk. The day before, we had ourpoll usual family meeting with Dr. Sandrijn, one of the critical care ICU attendings, and she mentioned that down the line, we should be making decisions regarding Maia's care, whether to be more aggressive or back off some of her treatments. Little did we all know, decisions would be made that following day! They wanted us to know what all our options were, however, a decision needed to be made now... Maia had already had 2 of these moments in which her heart seemed to slow down, which brought down her blood pressure and oxygen sats. This was extremely alarming because it could mean that her heart, which was the main organ keeping her strong through everything else, was now beginning to show signs of needing help... the Drs were afraid that all of Maia's complications were beginning to take a toll on her heart, and she needed help now. I will forever remember the Dr.'s words "... if we don't do something now, she might not make it through the night."
 |
| A crowded room |
The Drs asked if we wanted to put her back on life support, the ECLS/ECMO circuit. She had just been taken off the circuit about 2 weeks prior to all of this. Since we believed it was necessary to save her life by putting her back on life support, we agreed to go ahead and do it. So Dr. Neil Cambronero, one of the cardiac surgeons, told us they would go ahead and start setting up in Maia's room, since they thought it was too risky to have her make the trip to the OR. The same type of cannulas that were used last time, would again be placed into her neck. However, after about 20 minutes, the plan changed... we had another meeting with the Drs, who informed us that Maia's team of Drs were all texting and calling in with their opinions. They all agreed that putting Maia back on the ECLS circuit would do more harm than good. They explained that with Maia's physiology, their would be no benefit to put her back on life support. Which is why after 2 weeks on the ECLS circuit, mainly for lung support, her lungs did not improve like the Drs had originally hoped. So they expected the same thing to happen if we were to put her back on the circuit. So after everything was thoroughly explained to us, we decided against putting her back on life support. The Drs made sure we understood that this didn't mean any of them were giving up. We all would continue to fight for Maia and the Drs would continue to do everything they can, we just all agreed we wouldn't put her back on life support... they also brought up the fact that if Maia was on the circuit, and something were to happen, we would not be able to hold her, which is something they all felt Maia, and us, deserved... and if it came down to it, we made sure to let them know, that we did not want Maia to suffer. If her heart stops beating, we did not want any chest compressions done, or any electrical shocks to her heart. She has already been through so much, and survived so much, that if her heart stopped beating, it was a sign from Maia that she was done... that she gave it her all, that she was tired, and it was time for her to rest.
 C |
| Catching up on some beauty sleep |
As the party continued in Maia's room, we continued our discussion with her Drs in the empty room across from Maia's. Dr. Sandrijn suggested we try a steroid treatment. It was something she had been thinking about bringing up to Maia's team of Drs, and now would be an opportune time, since there is a risk of infection and Maia was already taking antibiotics. Although there is no proven research that this would help Maia's lungs, the logical thinking behind steroids is that it helps to reduce inflammation. If there is any inflammation in Maia's lungs that is causing her lungs to stay collapsed, the steroids would help. So we were on board with this aggressive form of treatment. They also let us know that they were more than willing to think out of the box when it comes to Maia. There is no other baby like her, so they honestly don't know what to expect when it comes to her and the treatments they've done and will try and do. Maia is very unpredictable and does not go by the book... she is writing her own book! We then began to end this highly emotional meeting with some personal thoughts and words of encouragement... we first thanked Maia's team of Drs and nurses. There really aren't enough words to describe what they have done, and what they continue to do. Saying "thank you" is just an outrageous understatement. And as if I wasn't crying enough that morning, the Drs thanked us... for inspiring them, the nurses, the entire staff, and everyone around us. They said we make their job easy, we help make taking care of Maia easy by always being positive, and that it has rubbed off and affected everyone in the unit. Then the unexpected happened... the Drs began to cry, as they told us how they too want the best for Maia, how they also want her to continue to fight, and that they would fight also... how it was impossible for them to not get attached because they've cared for her and watched her grow and survive for almost a year now. It was truly a humbling experience.
 |
| Such cute lil feet |
After Maia was stable we were able to go back into her room. She was now on heart meds, Epinephrine and Dopamine, to help her blood pressure, and the steroids were also started. Her vent settings were increased for more support and her nitric was increased to 20. She was sedated to help her rest, and the Drs continuously tweaked her dosages of her sedative Dex (dexmedetomidine), along with her heart meds and diuretics, until they could find the right combination that was both effective and made her happy. Her feeds were stopped and she was eventually switched to an IV drip of TPN (total parenteral nutrition). All these extra meds means more fluid intake for an already edematous Maia, so Drs had some of her meds concentrated to reduce the volume of the fluids she's taking in.I They also changed her diuretic from Lasix (furosemide) to Bumex (bumetanide), for the same purpose of switching to a more potent concentrated dosage.
 |
| Checking in on Maia after she was stabilized |
Meanwhile, Gordon spent the next several hours trying to get a hold of family and friends, to personally let them know what was going on with Maia. I also decided to put up a post on Facebook to update everyone and ask for prayers, it couldn't hurt! Gordon made calls and sent out texts, encouraging family and friends to visit since we didn't know what was going to happen. We tried not to sound desperate and give too much detail, however, we did want to inform them about Maia, and have them visit, especially if they had never met her. Another one of our concerns was my parents, who had plans for an overnight trip to Monterey with my dad's cousins who were visiting. We didn't want them to cancel or change their plans, but we didn't want to leave them completely in the dark about Maia. More importantly, we didn't want them to worry and focus on the negative things that could happen, which they are very good at doing. We were determined to focus on the positive, just like we always do. So my brother picked them up and brought them to the hospital, along with Marcus, who was spending the day with his Nino Dada. We let them know that Maia had gotten sicker, but was stable for now. We also didn't give too much information to Marcus because we didn't want to scare him. Their visit at the hospital was short and sweet, which worked out fine. They were able to see Maia before going out of town. Marcus seemed to sense that something wasn't right and somewhat avoided Maia, as he played with his Legos.
 |
| Maia didn't like all her gifts |
 |
| Stare down with her giraffe |
As the day went on, we had more visitors come through... almost all shed tears as we described what went on that morning. We also received countless texts and calls, offering prayers, support, and words of encouragement. During the next few days, more family and friends came to visit, and as much as we enjoyed seeing everyone, it was as if Maia loved it even more!!
 |
| Maia and her braids |
It's been over a week now since that Saturday... and Maia seems to be responding well to both her meds and seeing new faces that love and care for her. She is slowly being weaned off of the vent and all her meds, including the steroids. She continues to get regular x-rays to check her lungs and it was a pleasant surprise to see some improvement after a few days of being on the steroids. Drs still aren't sure how the steroids played a part in all of this. Maia seems to like her blood pressure on the higher side, which keeps her oxygen sats up. However, when she gets mad and agitated, her sats go down and her CO2 goes up... a bad combination. So it's important to keep her happy and relaxed, which gets pretty complicated when trying to wean her off meds. Plus, she's also teething... something we all seem to forget amidst the other priorities! So part of her fussiness and irritation can simply be explained because of teeth! Her vent settings have gone down considerably and she's requiring less vent support. She's also been weaned off of the nitric since her drama on Saturday, but she still has a long way to go in the respiratory department, especially with her collapsed lungs and ARDS (acute respiratory distress syndrome). With the help of her diuretics, she is less swollen now, but they've had to adjust the dosage several times because they don't want to stress out her already fragile kidneys. She's been peeing so much that they've had to give her extra potassium at times. We would occasionally joke that this all started when one of her nurses put many tiny braids in her hair and this was all just a bad reaction to her not liking the braids! We kept them in for several days, but they were starting to remind me of Coolio, and they were looking like dreadlocks so we took them out Sunday. Since then, Maia is doing much better! But in reality, in the big picture, she's made little progress considering all her setbacks. But she's showing signs of improvement... no matter how tiny the steps she's making, they are steps forward, and a sign that she wants to continue the fight.
 |
| Maia loves sucking on a sponge on a stick, it's for cleaning her mouth but she uses it for teething |
Once again, we want to thank everyone for the outpouring of love, support and prayers... during both the good times and the difficult times. Many of you have told us that it's been hard to express whatever you're feeling and we want you to know that it's ok... just be yourself... our circumstances may have changed but we haven't! We are aware that anything can happen and we are accepting of whatever God has planned for us and Maia. So as I mentioned earlier, we're encouraging family and friends to visit. We feel it's brought renewed strength to Maia to see the faces of those that love and care for her... to know who is fighting right along with her.
Jeremiah 29:11
For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.
Thank you for the update. My prayers continue daily and my love is sent to all. The Lord has His arms around all of you and His comfort in great. Aunt Noni
ReplyDeleteI have been following Maia's progress and messages through Facebook, I have been praying that she gets well, very much...All that need prayers, everybody is included....but there is a special place in my prayers for Maia.....Just keep fighting....God will take care of the rest....Thank You to all the Doctors, Nurses, and hospital staff....A tear could not stop when I read about Maia's flight......God Bless you all...
ReplyDeleteSweet Baby girl , keep on fighting. You are so loved by so very many people, I will continue to pray for you sweet baby and I hope some day to meet you.
ReplyDeleteI am just coming across your blog and I am so very sorry for your loss. I am amazed by your strength and the strength of your family. May God bless you and keep you in your time of mourning. You are receiving love and prayer from NYC. May Grace and peace be with you.
ReplyDelete