I want to apologise for any confusion my last post may have caused, we were discharged from the hospital on Friday March first and arrived home at around dinner time. We are home now and are trying to adjust to life outside of the hospital. It is an amazing feeling being home day and night with all four of my kiddos and my husband. Everyone is happy that we are home, but hands down the person that is the happiest...my husband:). He makes me feel so loved and needed, just looking around my house is a reminder of that(think a much needed spring cleaning).
I'll be honest, it has not been the smoothest or easiest transition, our coming home, not that I was expecting it would be. It has been awhile since I have taken care or our girl all by myself, all the while being a wife and mother to four of the most amazing kids (hey, it's my blog and I can boast if I want to:). Taking care of Lucy 24/7 was a lot before her most recent issues, but it is even more now. The minute we arrived home on Friday we were greeted by "the kids", our nurse, and infusion nurse, and also by the phone ringing. I had to take the call as it was our infusion company calling to coordinate delivery of our weekly medical supplies for that evening....nothing like jumping in with two feet. Lucy's order is anywhere from six to eight boxes of meds and supplies weekly! Recalling the number of meds for an entire week, TPN bags, fluid bags, med lines, lumen caps, needle syringes in 3ml, 5ml, and 10ml increments mind you, gloves, transfer caps, lab kits, dressing change kits, adhesive products, chlorascrub pads... and the list goes on and on (over 6 pages) that are needed to take care of our girl at home is a cognitive exercise that rivals doing the Sunday New York Times cross word puzzle. Medical inventory specialist, it's just one of the hundreds of job titles that I have. Professional medical supply organizer, that is the job that I take on after my medical inventory specialist job has ended for the evening.
The kids, they were thrilled to see us walk in the door last Friday, they continue to keep saying "I can't believe that you and Lucy are home!". Although yesterday, when I announced an official Marlett House cleaning day they did not sound as enthusiastic when they said, "oh yeah...Mom's home". Each of us have had moments of difficulty, perhaps me more than anyone, but the kids have been a bit more dramatic about theirs. I feel at times that I have divided myself into so many tiny pieces that I am going to crumble and not be able to be put back together. Perhaps I fear more if I do crumble when I eventually get put back together I won't be the same. Drew is always to first to recognize that I am the last to recognize the change that has occurred right before our eyes. I think it's a survival mechanism, I somehow attempt to try and make things go back to the way they were. When I fail at this, because I will, it's inevitable nothing can or will ever stay the same even in the most ideal situation, I will then be able to see more clearly where we are and what has occurred. I have processing delays, just like Lucy, only mine are more emotional delays.
It doesn't help that we are functioning on very little sleep...think newborn baby only ours is nearly 5 and has a central line infusing dozens of meds, TPN, and fluids 24 hours a day. A heart rate/pulse ox monitor that alarms at all hours of the day and night, sometimes for false alarms and sometimes for legitimate alarms which means you can't ignore any alarm. Connected to that baby is over fifty feet of oxygen tubing that no matter how I coil it up, inevitably, I will trip over it in the middle of the night. Our baby has over two dozen IV meds to infuse that are so strategically timed it can make even the most punctual person late if they had to keep to a med schedule like ours. There simply is very little time in between meds to do anything else. A GJ tube that is connected to two drainage bags 24/7 that like to pour out bile on some days and not on others which just has me going huh? most days. One supra pubic catheter that has almost ended our straight cathing days, that is when it does not get clogged. This only tends to happen on the very rare occasion when I want to leave our house, this is just how our life is, we just have to learn to roll with it. Just like with a newborn baby, you have to learn to sleep when the baby does, we are learning. Of course day light savings was just a cruel occurrence this weekend.
Remembering EVERYTHING, it's just like remembering how to ride a bike...not really. I find myself having to write a lot of things down so I can plot out just how I am going to do this or that, my memory is not what it used to be, but I also have a lot more to remember . When Lucy was born I had a labor and delivery nurse, who also happened to be the morther of four, give me some advice... "get yourself a notebook and write it down", she wasn't kidding! I do feel like I have my groove back when it comes to taking care of Lucy, I really had no choice but to jump back on the saddle again. As for the rest of our life, it's a work in progress. Laundry is caught up for the most part, and we went to Costco for the first time this year. FYI, it's better to go more often, it will save your eyes from popping out of your head when you see the finale tally at the bottom of that very long receipt. Our house is slowing starting to look like a mama lives here too, but I don't want to give you the wrong impression, it's by no means clean. Let's just say I am the master of the five minute pick up.
Our life is just that, our life, we are doing our best with what we have been given. I write all of this not for your pity but to document just where we are in our life at the moment. Coming home from a very long hospitalization with a child who is not going to "get better" but is "doing better" is a strange feeling. I am not sure what direction life is headed most days, and sometimes I am just fine with that and other days it just plain sucks.
I'll be honest, it has not been the smoothest or easiest transition, our coming home, not that I was expecting it would be. It has been awhile since I have taken care or our girl all by myself, all the while being a wife and mother to four of the most amazing kids (hey, it's my blog and I can boast if I want to:). Taking care of Lucy 24/7 was a lot before her most recent issues, but it is even more now. The minute we arrived home on Friday we were greeted by "the kids", our nurse, and infusion nurse, and also by the phone ringing. I had to take the call as it was our infusion company calling to coordinate delivery of our weekly medical supplies for that evening....nothing like jumping in with two feet. Lucy's order is anywhere from six to eight boxes of meds and supplies weekly! Recalling the number of meds for an entire week, TPN bags, fluid bags, med lines, lumen caps, needle syringes in 3ml, 5ml, and 10ml increments mind you, gloves, transfer caps, lab kits, dressing change kits, adhesive products, chlorascrub pads... and the list goes on and on (over 6 pages) that are needed to take care of our girl at home is a cognitive exercise that rivals doing the Sunday New York Times cross word puzzle. Medical inventory specialist, it's just one of the hundreds of job titles that I have. Professional medical supply organizer, that is the job that I take on after my medical inventory specialist job has ended for the evening.
The kids, they were thrilled to see us walk in the door last Friday, they continue to keep saying "I can't believe that you and Lucy are home!". Although yesterday, when I announced an official Marlett House cleaning day they did not sound as enthusiastic when they said, "oh yeah...Mom's home". Each of us have had moments of difficulty, perhaps me more than anyone, but the kids have been a bit more dramatic about theirs. I feel at times that I have divided myself into so many tiny pieces that I am going to crumble and not be able to be put back together. Perhaps I fear more if I do crumble when I eventually get put back together I won't be the same. Drew is always to first to recognize that I am the last to recognize the change that has occurred right before our eyes. I think it's a survival mechanism, I somehow attempt to try and make things go back to the way they were. When I fail at this, because I will, it's inevitable nothing can or will ever stay the same even in the most ideal situation, I will then be able to see more clearly where we are and what has occurred. I have processing delays, just like Lucy, only mine are more emotional delays.
It doesn't help that we are functioning on very little sleep...think newborn baby only ours is nearly 5 and has a central line infusing dozens of meds, TPN, and fluids 24 hours a day. A heart rate/pulse ox monitor that alarms at all hours of the day and night, sometimes for false alarms and sometimes for legitimate alarms which means you can't ignore any alarm. Connected to that baby is over fifty feet of oxygen tubing that no matter how I coil it up, inevitably, I will trip over it in the middle of the night. Our baby has over two dozen IV meds to infuse that are so strategically timed it can make even the most punctual person late if they had to keep to a med schedule like ours. There simply is very little time in between meds to do anything else. A GJ tube that is connected to two drainage bags 24/7 that like to pour out bile on some days and not on others which just has me going huh? most days. One supra pubic catheter that has almost ended our straight cathing days, that is when it does not get clogged. This only tends to happen on the very rare occasion when I want to leave our house, this is just how our life is, we just have to learn to roll with it. Just like with a newborn baby, you have to learn to sleep when the baby does, we are learning. Of course day light savings was just a cruel occurrence this weekend.
Remembering EVERYTHING, it's just like remembering how to ride a bike...not really. I find myself having to write a lot of things down so I can plot out just how I am going to do this or that, my memory is not what it used to be, but I also have a lot more to remember . When Lucy was born I had a labor and delivery nurse, who also happened to be the morther of four, give me some advice... "get yourself a notebook and write it down", she wasn't kidding! I do feel like I have my groove back when it comes to taking care of Lucy, I really had no choice but to jump back on the saddle again. As for the rest of our life, it's a work in progress. Laundry is caught up for the most part, and we went to Costco for the first time this year. FYI, it's better to go more often, it will save your eyes from popping out of your head when you see the finale tally at the bottom of that very long receipt. Our house is slowing starting to look like a mama lives here too, but I don't want to give you the wrong impression, it's by no means clean. Let's just say I am the master of the five minute pick up.
Our life is just that, our life, we are doing our best with what we have been given. I write all of this not for your pity but to document just where we are in our life at the moment. Coming home from a very long hospitalization with a child who is not going to "get better" but is "doing better" is a strange feeling. I am not sure what direction life is headed most days, and sometimes I am just fine with that and other days it just plain sucks.
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YOU are simply amazing! Give yourself "a pass" as much as possible. Prayers for strength and peace as you continue to walk this difficult journey.
Welcome home. I will be praying a mommy-prayer for you: lots of energy, huge smiles, healing hearts and all the rest that goes with CLEANING..ICK!!!!
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