We moved to the Ronald McDonald House, and it was a challenging process. We had lots of stuff, lots of stairs, and a son who was feeling significantly less than stellar. So, he crashed on the bed and I climbed the hill with my arms fully loaded, climbed the stairs to our room, put away stuff, then repeated...multiple times.
But the physical challenge of moving was not what bothered me. It's funny, but I really struggled emotionally. It finally dawned on me, that in the last four weeks, I slept at home maybe one of those weeks. And I won't get back to my very own bed until sometime later this month. But it isn't my own comfy bed that is the problem, it is the sense of home. At the hotel, we had a kitchen, living room, separate bedrooms, and a bathroom. It wasn't home, but it resembled home in its set up. Here at the RMH, we are basically in a communal living arrangement with a bedroom that we share (think hotel room). No one talks to anyone here, yet we all share the same communal space, so it is just not homey. They try to make it so, but it just isn't.
Family is one of those difficult to define concepts. You have this emotional bond with the people who share your space, and you are accepted and loved because of that bond. It doesn't matter where that home is, but knowing that your family is there is sufficient. And knowing that they love you irregardless of whether you are having a bad day is beyond priceless.
So, here we are in the RMH, close to the hospital...the best possible scenario. We are totally settled before the surgery. But all I want is to be home.
Saturday, November 6, 2010
Friday, November 5, 2010
Mamabear Strikes Again
I apologize for the lack of info. It really has been a long few days. As a result, you get to read a very long post. :)
We saw the orthodontist which was...entertaining. He is making a mold of Will's mouth and a splint that will help to wire Will's jaw back together after surgery. He is obviously a pediatric orthodontist. When he finished with Will, he said, "Think I have all the pictures I need of your toothies." Will was amused.
We then killed an hour and a half then headed to the appointment with the plastic surgeon...where we waited an additional two hours past our appointment time. Fortunately, he was totally worth the wait. He was so kind to Will. Even as he explained the horrid details of what is to come, he did it with a gentleness that was very appreciated. The full scope is truly just ugly. Basically his lower jaw will be split down the middle (including his lip), his tongue will be split, and he will have a tracheostomy. The trach had been removed from the plan, but Dr. Bilmeier apologized and stated that it was indeed necessary.
After that appointment, I looked at Will and said, "I wish we could pretend it all away." He replied, "I already do that." Compartmentalization. I am a pro at that, and apparently so is he. So, we pretended it away and then went for food and retail therapy. :)
Will has been wanting a Cincinnati Reds hoody, so while here, I had hoped to find him one. Well, we went to a bunch of stores. You can find men's medium through xxl, but you cannot find a small. Apparently they don't make a small. So we looked for a youth xl. That is literally the only size we could not find. So, the internet quest begins...
Thursday we had the day off, so I let Will sleep til he awakened (which was 1 pm!!) and then we headed to find Will a coat. We bought him a coat last December, and I bought it a size larger than he needed so he would have it this year. He brought it with him...but when he put it on, his wrists are forearms were just a little too visible. So we obviously need a coat, and taking him right after surgery is simply not kind. So we went shopping...again...then headed to Whole Foods for groceries. We dropped those off and I made the daily call to the Ronald McDonald House and discovered that we have a room! Cool! But we have to leave immediately to register in time. Not so cool. It is rush hour and will take more than 30 minutes to get there.
Today was the anesthesia pre-op appointment. I was able to voice my concerns regarding Will's medications and food issues post-op, so she did include that in her email to the surgeons involved. She also recommended that we make an appointment with Dr. Putnam, a gastroenterologist and guru of EE. So, I called clinical concierge and made my request for a miraculous appointment in the near future. She is actually hoping to get Will seen while he is inpatient. No promises, but she is trying. That would be mimraculous because his appointments are apparently a treasured commodity. :)
Somehow Mimi, Dr. Crone's assistant, received a call that I was unhappy with anesthesia. Interesting, because I am not...I am unhappy with my unanswered questions regarding food and meds post-op, but I am not unhappy with anesthesia. So I told Mimi my concerns and she kindly patted me on the head and told me that all will be fine. Um, if you know me, a head pat is so not going to do it. :)
I recognize that I can be a full fledged mama bear regarding William. But when you have all of these different specialists focusing on their own specialty and no one looking at the big picture, then someone has to see that big picture. Fine. Will will have surgery, be deconstructed, then reconstructed. What happens when he doesn't receive his bp meds because he can't take them orally? Seriously, which ones of these can be given IV? Someone needs to be considering the options. The consequences of NOT considering that little detail are significant. So please do not pat me on the head. My cub is in danger and you do not want to be the one standing in the way of him getting what he needs. :)
I think she finally understood that I am not being a pain in the neck just cause I can. I really have valid concerns and they need to be addressed. They are surgeons, not physicians who know how to handle mito and autonomic dysfunction. I don't expect them to understand it all. But I do expect them to ensure that their patient is receiving the meds and services necessary for his well being. So, I hopefully gave them the nudge toward the bigger picture and can put my claws away...at least I hope so.
We saw the orthodontist which was...entertaining. He is making a mold of Will's mouth and a splint that will help to wire Will's jaw back together after surgery. He is obviously a pediatric orthodontist. When he finished with Will, he said, "Think I have all the pictures I need of your toothies." Will was amused.
We then killed an hour and a half then headed to the appointment with the plastic surgeon...where we waited an additional two hours past our appointment time. Fortunately, he was totally worth the wait. He was so kind to Will. Even as he explained the horrid details of what is to come, he did it with a gentleness that was very appreciated. The full scope is truly just ugly. Basically his lower jaw will be split down the middle (including his lip), his tongue will be split, and he will have a tracheostomy. The trach had been removed from the plan, but Dr. Bilmeier apologized and stated that it was indeed necessary.
After that appointment, I looked at Will and said, "I wish we could pretend it all away." He replied, "I already do that." Compartmentalization. I am a pro at that, and apparently so is he. So, we pretended it away and then went for food and retail therapy. :)
Will has been wanting a Cincinnati Reds hoody, so while here, I had hoped to find him one. Well, we went to a bunch of stores. You can find men's medium through xxl, but you cannot find a small. Apparently they don't make a small. So we looked for a youth xl. That is literally the only size we could not find. So, the internet quest begins...
Thursday we had the day off, so I let Will sleep til he awakened (which was 1 pm!!) and then we headed to find Will a coat. We bought him a coat last December, and I bought it a size larger than he needed so he would have it this year. He brought it with him...but when he put it on, his wrists are forearms were just a little too visible. So we obviously need a coat, and taking him right after surgery is simply not kind. So we went shopping...again...then headed to Whole Foods for groceries. We dropped those off and I made the daily call to the Ronald McDonald House and discovered that we have a room! Cool! But we have to leave immediately to register in time. Not so cool. It is rush hour and will take more than 30 minutes to get there.
Today was the anesthesia pre-op appointment. I was able to voice my concerns regarding Will's medications and food issues post-op, so she did include that in her email to the surgeons involved. She also recommended that we make an appointment with Dr. Putnam, a gastroenterologist and guru of EE. So, I called clinical concierge and made my request for a miraculous appointment in the near future. She is actually hoping to get Will seen while he is inpatient. No promises, but she is trying. That would be mimraculous because his appointments are apparently a treasured commodity. :)
Somehow Mimi, Dr. Crone's assistant, received a call that I was unhappy with anesthesia. Interesting, because I am not...I am unhappy with my unanswered questions regarding food and meds post-op, but I am not unhappy with anesthesia. So I told Mimi my concerns and she kindly patted me on the head and told me that all will be fine. Um, if you know me, a head pat is so not going to do it. :)
I recognize that I can be a full fledged mama bear regarding William. But when you have all of these different specialists focusing on their own specialty and no one looking at the big picture, then someone has to see that big picture. Fine. Will will have surgery, be deconstructed, then reconstructed. What happens when he doesn't receive his bp meds because he can't take them orally? Seriously, which ones of these can be given IV? Someone needs to be considering the options. The consequences of NOT considering that little detail are significant. So please do not pat me on the head. My cub is in danger and you do not want to be the one standing in the way of him getting what he needs. :)
I think she finally understood that I am not being a pain in the neck just cause I can. I really have valid concerns and they need to be addressed. They are surgeons, not physicians who know how to handle mito and autonomic dysfunction. I don't expect them to understand it all. But I do expect them to ensure that their patient is receiving the meds and services necessary for his well being. So, I hopefully gave them the nudge toward the bigger picture and can put my claws away...at least I hope so.
Tuesday, November 2, 2010
We're Baa-aack!
It was a bright and windy day...and we safely made it to Cincinnati. It took a little longer than normal due to head winds on the first leg of the flight, but the second leg was speedy. :) We were met at the airport by Matt, pastor of Faith Pres, and Becky G. Will, on the descent of both flights, experienced pain behind his eye and a pressure headache. We also went for much longer than normal without food, so he was not feeling well at all. So Becky took my list and headed to Walmart while I headed to the hotel to start an IV.
We have since had dinner, are waiting on Will's IV to finish, and are settled in and ready for the appointments tomorrow...We see the orthodontist and the plastic surgeon.
But on another note...over the course of the last two weeks, we have been shockingly blessed. As we continue to travel so constantly, there is this strain between budget and keeping Will healthy. Do we stay in a hotel or with friends? Do we stay close to the hospital or further out where we can obtain a hotel with a kitchen? What is best for Will and what is best for our budget have become difficult choices. However, over the last two weeks, we have been blessed with gift cards, financial support, and the gracious gift of the use of a vehicle until Billy arrives on Sunday evening. I never would have dreamed that we would have been so incredibly blessed. I truly am astounded. There is no way to sufficiently say thank you...but thank you. To realize that we will be here for quite a while, and to not have to worry about how we are going to manage it, is a gift immeasurable. To be able to just focus on what needs to be done for William is a huge relief. To know that Will can eat Five Guys burgers every day if he really wants to before the surgery...well, that is a gift in and of itself. I may not understand why he may want to do that...but... :)
I need to pull Will's IV so we can both sleep. It has been a very long day. Thank you for your prayers and support and friendship. It has been a huge testimony to so many others as we explain how the visible body of Christ has chosen to walk beside us throughout all of this. We are indeed blessed.
We have since had dinner, are waiting on Will's IV to finish, and are settled in and ready for the appointments tomorrow...We see the orthodontist and the plastic surgeon.
But on another note...over the course of the last two weeks, we have been shockingly blessed. As we continue to travel so constantly, there is this strain between budget and keeping Will healthy. Do we stay in a hotel or with friends? Do we stay close to the hospital or further out where we can obtain a hotel with a kitchen? What is best for Will and what is best for our budget have become difficult choices. However, over the last two weeks, we have been blessed with gift cards, financial support, and the gracious gift of the use of a vehicle until Billy arrives on Sunday evening. I never would have dreamed that we would have been so incredibly blessed. I truly am astounded. There is no way to sufficiently say thank you...but thank you. To realize that we will be here for quite a while, and to not have to worry about how we are going to manage it, is a gift immeasurable. To be able to just focus on what needs to be done for William is a huge relief. To know that Will can eat Five Guys burgers every day if he really wants to before the surgery...well, that is a gift in and of itself. I may not understand why he may want to do that...but... :)
I need to pull Will's IV so we can both sleep. It has been a very long day. Thank you for your prayers and support and friendship. It has been a huge testimony to so many others as we explain how the visible body of Christ has chosen to walk beside us throughout all of this. We are indeed blessed.
Saturday, October 30, 2010
There's No Place Like Home, Toto
With strong instructions to appear at the sleep study Sunday night, Dr. T discharged us Friday. Her presumption is that Will's bp must be dropping every night at 4 am. One of the doctors who worked at MCV in their sleep study department is now at Cincinnati Children's Hospital, so if we need any follow up before the surgery, Dr. T's office will arrange to have us seen while in Ohio later this week. So, she has approved us for travel and for surgery.
At about the time of discharge, I received the call from Angel Flight. We have a flight to Cincinnati Tuesday. Our return is still uncertain, but since the date of our return is uncertain, I am not worried about it.
Upon our arrival home, Erlene had made dinner (for which I was so thankful...I have hardly slept all week!), and Charlene graciously rescheduled, then waited for me to show up for, my haircut. (Never underestimate the power of a haircut when exhausted.) :) I walked in the door, she hugged me, I cried, and she said, "Red or white?" I laughed, realized I would be there for an hour, and said, "Red." I had a good cry, a great hair cut, a glass of wine, and was able to breathe. What a long week...
Our IV company delivered all of our IV supplies for the coming ten days. Ever seen a styrofoam cooler the size of a footlocker? Well, it is sitting in the middle of my kitchen. So, apparently I am going to have to get all of the laundry washed, dried, boxed, and shipped to our hotel because there is no way we will make our weight limitation due to medical supplies alone.
My computer battery is dying...so the last thing I wanna say is thank you. We have been immeasurably blessed. While this was an unbelievably difficult week, our physical needs were met with such grace and extravagance. We not only have an incredible blender and sufficient financial resources with which to make the trip comfortably, but I bought zero meals at the hospital. My son-in-law made me an amazing breakfast twice, a friend brought stew and played the Wii with Will (and enough food to feed an army!), and another friend supplied Subway. So not only were the physical needs met, but the emotional support represented by each was huge. To know that we are loved and cherished is a gift immeasurable. The hospital can be a very lonely place. Thanks seems insufficient...
At about the time of discharge, I received the call from Angel Flight. We have a flight to Cincinnati Tuesday. Our return is still uncertain, but since the date of our return is uncertain, I am not worried about it.
Upon our arrival home, Erlene had made dinner (for which I was so thankful...I have hardly slept all week!), and Charlene graciously rescheduled, then waited for me to show up for, my haircut. (Never underestimate the power of a haircut when exhausted.) :) I walked in the door, she hugged me, I cried, and she said, "Red or white?" I laughed, realized I would be there for an hour, and said, "Red." I had a good cry, a great hair cut, a glass of wine, and was able to breathe. What a long week...
Our IV company delivered all of our IV supplies for the coming ten days. Ever seen a styrofoam cooler the size of a footlocker? Well, it is sitting in the middle of my kitchen. So, apparently I am going to have to get all of the laundry washed, dried, boxed, and shipped to our hotel because there is no way we will make our weight limitation due to medical supplies alone.
My computer battery is dying...so the last thing I wanna say is thank you. We have been immeasurably blessed. While this was an unbelievably difficult week, our physical needs were met with such grace and extravagance. We not only have an incredible blender and sufficient financial resources with which to make the trip comfortably, but I bought zero meals at the hospital. My son-in-law made me an amazing breakfast twice, a friend brought stew and played the Wii with Will (and enough food to feed an army!), and another friend supplied Subway. So not only were the physical needs met, but the emotional support represented by each was huge. To know that we are loved and cherished is a gift immeasurable. The hospital can be a very lonely place. Thanks seems insufficient...
Friday, October 29, 2010
Tomorrow...Tomorrow...We will go home...tomorrow.
It is always a day away.
The 4 am drop in blood pressure that created the need for another bolus of fluid is likely going to cause a cancelation of our discharge. They said maybe we could go home tonight...and maybe not. We are waiting on Dr. Teasley to make that call.
She is fabulous, our Dr. T. Everything she is doing is to help Will successfully arrive in Ohio in time for his surgery. I am grateful for her steadfast determination and care for Will. But it is so discouraging to "know" you are going home in the morning and then...not.
The area in which we reside has zero windows. Neither of us has walked out of the hospital since we arrived Monday. Time has a way of standing still and marching on all at the same time. Will woke up from a nap a couple of days ago and said, "It is nighttime?" Yes. It was 8 PM.
So when we do finally get our walking papers, then I will let ya know.
The 4 am drop in blood pressure that created the need for another bolus of fluid is likely going to cause a cancelation of our discharge. They said maybe we could go home tonight...and maybe not. We are waiting on Dr. Teasley to make that call.
She is fabulous, our Dr. T. Everything she is doing is to help Will successfully arrive in Ohio in time for his surgery. I am grateful for her steadfast determination and care for Will. But it is so discouraging to "know" you are going home in the morning and then...not.
The area in which we reside has zero windows. Neither of us has walked out of the hospital since we arrived Monday. Time has a way of standing still and marching on all at the same time. Will woke up from a nap a couple of days ago and said, "It is nighttime?" Yes. It was 8 PM.
So when we do finally get our walking papers, then I will let ya know.
Thursday, October 28, 2010
The Sun'll Come Out Tomorrow...Tomorrow...No, Tomorrow...
We are being discharged tomorrow...or at least that is what I hear...but I have heard those words since...Tuesday night. :) However, this time, I think it might actually happen.
Will's bp dropped again at 4 this morning. Another bolus was run and an hour later, it was still low. So, I suggested we run it a little faster and it started to climb. We doubled one of his bp meds, and finally, it is holding. As a matter of fact, it is holding at a level that we have not seen in a couple of years.
So since Saturday, he has had about 24 liters of fluid, loads of meds, and is finally returning to baseline. Surgery is still on. He will require a liter and a half of fluid a day while we are gone, though, to maintain his baseline. I have three days to get it all organized.
It has been a wild month. We had one trip to Ohio two weeks ago. Last week we had the grandkids and drove 740 medical miles and then drove to Scottsville to help Chelsea move. This week, Will and I lived at MCV. He and I leave Tuesday for as much as three weeks and arrangements for everything are very much incomplete. My younger kids wonder if I have moved. The older kids have become amazingly self sufficient. Erlene has totally stepped in and managed daily life for the littles. Angie continues to wash linens that never seem to otherwise get done. Friends and acquaintances and people totally unknown to us have made all of this a little more financially and emotionally bearable. So while it seems insanely overwhelming and exhausting, there are all of you holding up our arms and helping to carry the load for which I personally am so very grateful.
Will's bp dropped again at 4 this morning. Another bolus was run and an hour later, it was still low. So, I suggested we run it a little faster and it started to climb. We doubled one of his bp meds, and finally, it is holding. As a matter of fact, it is holding at a level that we have not seen in a couple of years.
So since Saturday, he has had about 24 liters of fluid, loads of meds, and is finally returning to baseline. Surgery is still on. He will require a liter and a half of fluid a day while we are gone, though, to maintain his baseline. I have three days to get it all organized.
It has been a wild month. We had one trip to Ohio two weeks ago. Last week we had the grandkids and drove 740 medical miles and then drove to Scottsville to help Chelsea move. This week, Will and I lived at MCV. He and I leave Tuesday for as much as three weeks and arrangements for everything are very much incomplete. My younger kids wonder if I have moved. The older kids have become amazingly self sufficient. Erlene has totally stepped in and managed daily life for the littles. Angie continues to wash linens that never seem to otherwise get done. Friends and acquaintances and people totally unknown to us have made all of this a little more financially and emotionally bearable. So while it seems insanely overwhelming and exhausting, there are all of you holding up our arms and helping to carry the load for which I personally am so very grateful.
Wednesday, October 27, 2010
Hold that Thought
So we are not going home as hoped. Will's little blip is now a big blip. His bp is a bit unstable and he is not feeling well and is no longer eating. So, labs are being run, antibiotics started, nebs every 4 hours, and yet more fluids. The three liters a day is being supported by an additional 1/2 liter as needed.
We really have no clue what is going on other than he is simply unstable and we get to continue hanging out here with some cool nurses and our favorite doctor. Billy will bring the littles down this evening so I can see them and he can hang with Will for a little while.
We really have no clue what is going on other than he is simply unstable and we get to continue hanging out here with some cool nurses and our favorite doctor. Billy will bring the littles down this evening so I can see them and he can hang with Will for a little while.
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