I am again sitting here, in front the computer, trying to figure out how to capture our last few days. One because a lot has happened, and one because I just don't know how. But, will try as I know so many of you are searching for an update and information on our favorite Gabby.
Pain, it is such a pain. A pain to control, a pain to figure out where it is coming from, and a pain to come up with a safe plan that works and helps. Gabby's pain had been increasing over the early days of the week last week, so we came to the conclusion that the dilaudid drip was our best bet. So, in comes pain team (since went there is an infusion, they take over the management of the dosing. Pain team is staffed by Anesthesiologists) to discuss our transition to the drip vs doses. I was anxious for this change, knowing Gabby's sensitivity to these things, but it was the next step in our treatment. So, I meet a member of the team early in the day. She came in and I felt she didn't seem to be interested much in what I had to say. My typical experience with the team was, "Let's get this present pain under control and then form our plan." Long story short, though I thought I had strongly mentioned Gabby's sensitivity to these types of medications, she was started on a drip that was under the previous day's average. I am to understand now, that is typical practice, but again....I informed them Gabby was not typical. The hope is a constant dose benefits the pain treatment at a lower dose vs bolus doses that come and go. That make sense for most, but not here. We saw an increase in pain very quickly and we lost some ground when the IV was suspicious and we had to pause the drip. As SOON as you get behind on pain, playing catch up is a no win situation. She began having more seizures, which made the pain worse, which made us give more meds.....I feel you can see the pattern. By the afternoon we had the team in here again. I was upset that we were so behind, and again I was hoping they would address the pain she was in at that moment, vs the whole plan. All that was accomplished was a small raise in her bolus doses. As the day went on, she became not only more tired from the seizures and stiffness, but all the meds were catching up to her. That night they called and RRT (rapid response team) to come assess her since her breathing was slowing but her heart rate was high and her oxygen saturation (O2 sats) was drifting lower. The RR Team has a Respiratory Therapist, the ICU doctor, an experienced ICU Nurse (risk nurse) and our Medical attending doctor. Needless to say, they were all concerned. We tried a seizure med bolus and I asked for the nasal trumpet (A little tube that went up her nose to keep her airway open) As soon as we got those in she relaxed. Due to the amount of medications she had received, and her rate of breathing being so low, we checked her Co2 in her blood and it was high....she wasn't breathing off the Co2 with the shallow slow breathing. We were about to be sent to the ICU for support. I was a wreck. I felt so betrayed by the pain team, I felt so betrayed by life at that moment, and so terrified if she went up to the PICU......would she ever come out. And that thought scared me the most. The team that was in here that night, those lovely, strong, compassionate people, did EVERYTHING they could to keep here down here on the floor....and it worked. Her Co2 levels did raise a little more, but she was stable. Soon as the 2am blood work was back that we could stay with our nurse (who's passion is critical care kids and will be an ICU nurse as of next month!) and on the floor I relaxed. Everyone had the same goal, and they were so supportive of me. I finally fell asleep too.
The next day we were going back to the OR to get a double PICC line to run her nutrition and meds in the one port vs all the little IVs that are so precarious. We all were a little worried with the anesthesia again, but she was looking up. PICC placement went well, but post op had some issues. We were called down there to assess her. She was shivering and had a high heart rate....and her breathing was loud. Oh man, I was so worried. Then the Dr's wanted to check that Co2 again. I almost lost my lunch. I didn't realize I was SO worried about that until it came up again and again we were faced with a trip to the ICU. All I remember is staring at the Drs, around this little machine that reads the blood gas, and not breathing myself....until finally the Dr held a thumbs up. The tears just flew and I almost lost my footing. So much relief in that moment. Since then we are having better days overall. Breakthrough pain is being managed well and I am feeling better heard by the pain team.
Speaking of pain team, I did request a conversation with the Attending the next morning, especially since I was so strongly vocal the night before about how I felt about her pain management, she needed to hear it from me. The conversation went great, I felt heard and they had an opportunity to see where they fell short...sadly at the expense of Gabby and almost causing the ICU visit. I mean, it can't be 100% proven that the mismanagement is the cause, but I knew in my heart it was. The dr was kind, and thoughtful, and listened and agreed that I didn't seem heard. She was remorseful and apooigized, noting we should have done more earlier on to control it, but pain meds are scary.....that fine line between too much and not enough is an intricate dance, and a very tough dance to learn. She said in the afternoon she was concerned about Gabby's respiratory rate, and I stopped her there and asked why wasn't I informed of that? That was an important piece of information that would have definitely altered my feelings and actions for the day. I believe that was a learning moment for her, and she thanked me for the honesty and said they are always learning. I do believe her. Since our talk, which we thanked each other for later on in the day again, things have been back to where I feel they should be. We, thanks to AMAZING people, avoided the ICU, have her double PICC line in, and her pain is no longer being a pain.
Sorry this is so long. I have been quiet and that makes people worried, and I have told this story so many times that I just couldn't anymore. So, I hope this helps update the major information. It helps me to write it out too. To read it myself and work through those fears of that night....of the ICU and what is could mean. They said one night for support and work off the extra meds, but I saw what felt like forever....... and in the end we all won.
Sunday, September 20, 2015
Sunday, January 4, 2015
My Ideal
The backspace button and I are becoming quite close in regards to this post! "How?" you ask yourself, as this is only the first line? Well, what you don't see on the screen, like you would see on paper, is how many times I have started, erased, and restarted this post. I struggle with the transition from thoughts and feelings to words. Well, I don't seem to struggle at 3am when everything I want to say just flows naturally from my sleep deprived brain to what I hope is my memory, but turns out all I want to say must go the the CLOUD, whatever that is! I know it's supposedly a safe place for all of your most important things, but I am still unsure how to retrieve anything from there! So, please bare with me as I piece together all the things I have wanted to share over the year. I will have to rely on the old school 'memory', and that has been needing an upgrade for a while :)
As I lie awake those nights, being open and raw comes easy. Of course it does, I am safe in my own head, in my bed, and am supported by the strongest person I know in the world (the strongest even as she sleeps!). I take deep breaths and can eloquently dictate my fears and worries and know as soon as I can, I will let them out. Then morning comes, and in the light of day, those fears that I felt I could tackle seem bigger than I am, and for another day, they win. This year, I didn't set any resolutions, but rather an ideal. My ideal is to be as strong on the inside as I am on the outside.(like so many of my friends have done this year...you have all inspired me with your open and raw feelings to your realities) There is that small part of me, every time I hear someone say I have it all together, that wants to shout that indeed I do not! I do alright, yes, but I feel I could do more. And that's where this post comes in, and this is my first step in finding my ideal inside.
This past year, though full of smiles, love and laughter, has been riddled with uncertainties. I have had some bumps within my personal life as well as health, (diagnosed with hypothyroid, sprained SI joint, and currently a hip pull that is taking months to heal!). The biggest difficulties have been around Gabby's health, as am sure you all may have guessed. It is time to set aside those fears, and fight through my initial reaction to just say never mind, all is good. This is where I always struggle, for once you figure out how to access that cloud of feelings, and they aren't protected anymore, it is all quite real. Sometimes I prefer to ignore the real :)
In a small nutshell, Gabby is still undiagnosed. There are speculations here and there, but nothing so far has come in definitive. Our team here in Seattle has been working hard at trying their best to solve my beautiful mystery. This summer, during one week, we sat down with her research geneticist and her neurologist in 2 separate appointments. For as much as the appointments were filled with the same conversations, we were also made aware that given her worsening scoliosis contributing to breathing issues, seizures that were increasingly difficult to control, and her long hospital stays leaving her a little weaker every time, we needed to be prepared she may be with us only a year or 2 more. Even though there is no diagnosis, her progression follows a somewhat established curve. I was prepared for the heavy conversation with the research doctor, but not so much with her neurologist. He and I have a routine when it comes to our appointments. I blab about what I see, ask my questions, share some stories then he takes it all in and responds with his suggestions and we share a little laugh and we are on our way. This time was different. He came in, and sat in front of me and spoke first. I knew then, this wasn't my usual check in appointment. I could read on his face, that we had some things to discuss that would be hard. While going over her EEG from the June admit, I interrupted and asked about some periods of no activity I saw on the screen. I told him I was talking to the nurse and noticed on her screen, all 4 lines were flat....As much as I was prepared in my head for the answer, I wasn't prepared to have it confirmed. Those flat lines mean no activity.... she apparently has had short stints like that in previous EEGs, but these were longer and more frequent. To this day, 6 months later, I still can't fully grasp that information. And in the grand scheme of things, I am not sure what it means, only that is part of this overall progression and something to use as a tool in trying our best to figure her out.
These discussions eventually lead us to have a care conference with our support team while Gabby was inpatient in the fall. This conference was initiated by Gabby's dad and myself. We knew it was time to sit down and attempt to figure out all that hard to figure out stuff. Our desire was to talk with these people who know us and know Gabby, during a time where we could be honest with ourselves, without the distractions of being in THAT moment. It was weirdly uplifting. I went in the room feeling heavy hearted and overwhelmed, but left feeling very supported, educated and like we will be surrounded with nothing but respect and love. I know that entire conversation could have gone different. I know for so many others it probably has, and that just again makes me feel like we are so extremely lucky to be where we are. These relationships with these caregivers are ones I know will stay with me through my life.
This news, this news wasn't news, that's just it. I always knew it. Always knew our lives wouldn't include so many things parents and children get to experience. Yet this was the first time, since the NICU doctor who transferred us to Children's when Gabby was 3 days old told Greg and I she didn't think Gabby would survive the night, that a timeline had been placed on us. So it became front page news in my head and heart. On the outside I made it all grand for Gabby and the family. Many times we went and did, even though I knew it was too much for Gabby, but we had to try. Right? Like dragging her, wheelchair and all, onto the beach in Seaside this summer. I just had to get her to the sunset and her toes in the sand, even if it meant dragging her through the sand dunes at my own back's expense. She needed that opportunity. I needed that experience WITH her.
I mean, what's a life on the couch with no experiences? Where I struggle internally is, what's a life full of missed experiences because you are unable to be present while in those moments? Those struggles earlier on were fleeting. I wouldn't let them take residence up in my head, but you can only take so many disappointments before the questions outweigh the answers. Then the bitterness comes back, and it gains strengths with each wave. Then they crash on you, like while in the bathroom administering diastat, while once again missing out on something, they crash through in tears you can't stop. Tears you are willing to go away because you know they aren't doing any good. What good comes from being mad and angry at something you can't control? Then you realize, it sucks. It isn't fair, yes I know life isn't fair, that's not what I mean. I don't feel I deserve everything to always go right, or be easy, or work out. But at some point, when nothing goes right, nothing feels easy and you can't remember the last time something just worked out, that's what you are angry at. All the planning, and rearranging to give Gabby the opportunity to experience something she would enjoy and time with her family, and none of it ends up feeling like it matters. You want to blame something, or someone....you want to yell and scream, but to who? To what? and that vicious cycle of bitterness and anger continue. There comes a time when you can take a step back and put that nonsense in its place, and I am good at that. Too good. I forget it is there until it sees the tiny crack. I am hoping that by being more transparent here, and allowing my bitterness to flow out, it will flow away. The seams can heal, and I can be strong again. It is so hard wondering if the next crack will be the one that brings you down hard, and you know you can't be down for long. My ideal is to tell myself it is OK to be down at times, to be weak, to be vulnerable....to deal with those feelings because each time I get up, I will be stronger. I will be healthier. I will be on the inside what I show on the outside.
As I lie awake those nights, being open and raw comes easy. Of course it does, I am safe in my own head, in my bed, and am supported by the strongest person I know in the world (the strongest even as she sleeps!). I take deep breaths and can eloquently dictate my fears and worries and know as soon as I can, I will let them out. Then morning comes, and in the light of day, those fears that I felt I could tackle seem bigger than I am, and for another day, they win. This year, I didn't set any resolutions, but rather an ideal. My ideal is to be as strong on the inside as I am on the outside.(like so many of my friends have done this year...you have all inspired me with your open and raw feelings to your realities) There is that small part of me, every time I hear someone say I have it all together, that wants to shout that indeed I do not! I do alright, yes, but I feel I could do more. And that's where this post comes in, and this is my first step in finding my ideal inside.
This past year, though full of smiles, love and laughter, has been riddled with uncertainties. I have had some bumps within my personal life as well as health, (diagnosed with hypothyroid, sprained SI joint, and currently a hip pull that is taking months to heal!). The biggest difficulties have been around Gabby's health, as am sure you all may have guessed. It is time to set aside those fears, and fight through my initial reaction to just say never mind, all is good. This is where I always struggle, for once you figure out how to access that cloud of feelings, and they aren't protected anymore, it is all quite real. Sometimes I prefer to ignore the real :)
In a small nutshell, Gabby is still undiagnosed. There are speculations here and there, but nothing so far has come in definitive. Our team here in Seattle has been working hard at trying their best to solve my beautiful mystery. This summer, during one week, we sat down with her research geneticist and her neurologist in 2 separate appointments. For as much as the appointments were filled with the same conversations, we were also made aware that given her worsening scoliosis contributing to breathing issues, seizures that were increasingly difficult to control, and her long hospital stays leaving her a little weaker every time, we needed to be prepared she may be with us only a year or 2 more. Even though there is no diagnosis, her progression follows a somewhat established curve. I was prepared for the heavy conversation with the research doctor, but not so much with her neurologist. He and I have a routine when it comes to our appointments. I blab about what I see, ask my questions, share some stories then he takes it all in and responds with his suggestions and we share a little laugh and we are on our way. This time was different. He came in, and sat in front of me and spoke first. I knew then, this wasn't my usual check in appointment. I could read on his face, that we had some things to discuss that would be hard. While going over her EEG from the June admit, I interrupted and asked about some periods of no activity I saw on the screen. I told him I was talking to the nurse and noticed on her screen, all 4 lines were flat....As much as I was prepared in my head for the answer, I wasn't prepared to have it confirmed. Those flat lines mean no activity.... she apparently has had short stints like that in previous EEGs, but these were longer and more frequent. To this day, 6 months later, I still can't fully grasp that information. And in the grand scheme of things, I am not sure what it means, only that is part of this overall progression and something to use as a tool in trying our best to figure her out.
These discussions eventually lead us to have a care conference with our support team while Gabby was inpatient in the fall. This conference was initiated by Gabby's dad and myself. We knew it was time to sit down and attempt to figure out all that hard to figure out stuff. Our desire was to talk with these people who know us and know Gabby, during a time where we could be honest with ourselves, without the distractions of being in THAT moment. It was weirdly uplifting. I went in the room feeling heavy hearted and overwhelmed, but left feeling very supported, educated and like we will be surrounded with nothing but respect and love. I know that entire conversation could have gone different. I know for so many others it probably has, and that just again makes me feel like we are so extremely lucky to be where we are. These relationships with these caregivers are ones I know will stay with me through my life.
This news, this news wasn't news, that's just it. I always knew it. Always knew our lives wouldn't include so many things parents and children get to experience. Yet this was the first time, since the NICU doctor who transferred us to Children's when Gabby was 3 days old told Greg and I she didn't think Gabby would survive the night, that a timeline had been placed on us. So it became front page news in my head and heart. On the outside I made it all grand for Gabby and the family. Many times we went and did, even though I knew it was too much for Gabby, but we had to try. Right? Like dragging her, wheelchair and all, onto the beach in Seaside this summer. I just had to get her to the sunset and her toes in the sand, even if it meant dragging her through the sand dunes at my own back's expense. She needed that opportunity. I needed that experience WITH her.
I mean, what's a life on the couch with no experiences? Where I struggle internally is, what's a life full of missed experiences because you are unable to be present while in those moments? Those struggles earlier on were fleeting. I wouldn't let them take residence up in my head, but you can only take so many disappointments before the questions outweigh the answers. Then the bitterness comes back, and it gains strengths with each wave. Then they crash on you, like while in the bathroom administering diastat, while once again missing out on something, they crash through in tears you can't stop. Tears you are willing to go away because you know they aren't doing any good. What good comes from being mad and angry at something you can't control? Then you realize, it sucks. It isn't fair, yes I know life isn't fair, that's not what I mean. I don't feel I deserve everything to always go right, or be easy, or work out. But at some point, when nothing goes right, nothing feels easy and you can't remember the last time something just worked out, that's what you are angry at. All the planning, and rearranging to give Gabby the opportunity to experience something she would enjoy and time with her family, and none of it ends up feeling like it matters. You want to blame something, or someone....you want to yell and scream, but to who? To what? and that vicious cycle of bitterness and anger continue. There comes a time when you can take a step back and put that nonsense in its place, and I am good at that. Too good. I forget it is there until it sees the tiny crack. I am hoping that by being more transparent here, and allowing my bitterness to flow out, it will flow away. The seams can heal, and I can be strong again. It is so hard wondering if the next crack will be the one that brings you down hard, and you know you can't be down for long. My ideal is to tell myself it is OK to be down at times, to be weak, to be vulnerable....to deal with those feelings because each time I get up, I will be stronger. I will be healthier. I will be on the inside what I show on the outside.
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