I do realize it has been more than a week since an update was written. That week was so crazy, though, that there was no time to even touch my computer beyond the basics of paying bills. So, how about I just give you the basics...
We arrived home on Sunday following a very fun flight with Charlie. Billy picked us up and drove us to the Brooks's house where we had chili and a great visit with the whole extended clan. We were headed home, though, when Caty drew me aside and expressed concern over how she was feeling.
After we unloaded the car and unpacked the basics, I headed to the hospital to meet Caty and David. The end result of that evening was the knowledge that indeed, Caty was in the process of a miscarriage. I really am just numb at this point. I grieve for her and their loss as well as ours. Inside I want to just scream and say, "Seriously??? How much more???" but that really isn't helpful.
The littles had school Monday and Tuesday, so those days were spent trying to unpack, put away, and create a path to my desk. My office is the room that catches all of the "I don't know what to do with this" or "someone is coming over so let's hide everything in here." Also, I have never seen the refrigerator that empty, so, out of mercy to my teenage boys especially, I spent the next three days visiting Wegmans, Walmart, Costco, and BJ's so a mutiny was not forthcoming.
Tuesday, the Buick broke down in Fredericksburg, so after dropping off that day's load of groceries, I picked up Billy. It was our 25th anniversary, so he took me to dinner at Bravo! and a movie.
Which brings us to Wednesday evening. Abigail had conscripted help, baked us a turkey, and in essence, salvaged Thanksgiving for my family. She and Linda delivered it all Wednesday afternoon. I truly have no idea what my family would have eaten that day had they relied upon me to cook. (In the last month, I think I have cooked maybe three meals. Maybe. Probably more like one or two.) There just is no time.
Thursday was spent with family and friends. It was probably the quietest Thanksgiving we have had since our first year (which was actually our first week) of marriage. (Dallas lost so it was indeed a great day!) Abigail came over in the evening and endured an amazingly tame game of Buttons. She handles our loud, crazy family remarkably well. :)
Which brings us to Friday. Caroline and I met Cailin's mom in Fredericksburg to do some shopping. We managed to avoid the worst of the crowds by going to Southpoint which was perfectly fine with me. Shopping without a list is stressful for me, (Yes, I am rather OCD.) and who had time to create a list? But Caroline was in heaven. Justice for Girls, Kohls, and 5 and Below are a dream day for that child. Somehow I missed the shopping gene, but Caroline definitely received hers.
Friday afternoon was spent at the laundromat with the littles. (When I arrived home, the washer was not functional. So, we await our favorite repairman whom we know way too well!) We used 11 washers and 8 dryers. Seriously, the laundry was just a little out of control!!! :) Home to dinner, starting an IV, and packing.
Saturday, we headed to Richmond to the airport. Someone from Billy's company had donated her frequent flyer miles to us. There had been insufficient time to request an Angel Flight (It takes 5 business days, but we only had two and a half.), so we were going to have to either drive or fly commericial. Driving is so not a good option for William (I already bought that t-shirt!) and flying commercial is expensive. But the gift of airline tickets was priceless. We were also blessed with hotel points sufficient to cover our week in Cincinnati. A car was also provided. After such an incredibly difficult week, not having to make arrangements or funds to manage this week truly left me speechless. (Which I realize is a feat!) :)
Will handled the trip moderately well. He did need another IV on Sunday afternoon, but so far he seems to be holding. He certainly does not look great, but he isn't totally lethargic either (at least not until you mention schoolwork!). I am hoping that a quiet day today will provide him with the rest he needs to endure the next two days. We have to be at the hospital by 8 tomorrow morning for an MRI and by 9 Wednesday morning, so this could get challenging. He does not do mornings well. :)
So for the moment, we are hanging out, living an almost "normal" life. Yesterday at church, it was truly amazing to feel so at home. We chatted with friends, made plans for the week, and worshipped as we would have in Virginia. I feel like I have two lives. One in Virginia with my family, and one here in Ohio with William. If Will actually gets better and we no longer have to travel here, I will truly and deeply miss the friends we have made here. Yesterday, Becky R was so funny...she said that when I am not here, it's like I am out of town. I am simply grateful that, considering the amount of time I spend here in Cinci, that I do have a "home" and great friends.
Monday, November 29, 2010
Saturday, November 20, 2010
Yesterday was pretty crazy. Will had remained stable, so it was finally decided that he could leave the hospital. He was inpatient for 11 days.
Becky G called me that morning and invited me to lunch with some women from church. It was so lovely to be normal for a few hours and to chat about life and listen to the adventures of other women and their families and to laugh with a friend. Laughter is such a gift.
I returned to the hospital and Will was finally awake and actually showered. I helped redress the stoma (the opening through which the trach was placed...it is still healing) and Mica, our nurse from the previous surgery who also was his first nurse on this trip, deaccessed his port. We were finally ready to leave. Billy and Will loaded the car while I headed to the pharmacy to pick up a few prescriptions.
We then headed to pick up new brace pads. Since Will is going to be in this neck brace at least another few months, he really needs new pads. The old ones are not so cushiony anymore and the brace is beginning to rub where it should not. We know the pads for the old, smaller brace were expensive ($50) so I expected these to be more expensive...but $200 per set??? No way! He needs the pads...so what to do. I called Will's case manager with our insurance company (insurance does NOT cover these.), but she is unavailable. The receptionist is about as apalled as I am, so she calls someone while I am on the phone with Larissa's voicemail. Alas, I have no answers, but she said that they will sell both sets to me for $200 total. Somehow that sounds so much better than $400...but still!
We leave the brace shop, and it is now 430. We are supposed to meet Becky and Keith R at Dixie Chili in Newport for dinner. Will is feeling great, so we head that direction. (We beat them there so I found a great yarn shop next door that I got to browse through!) We had such a pleasant conversation over dinner, then we headed back to the RMH.
We packed up everything we did not need so Billy could take it with him today. Then we sat down and watched the 4th Harry Potter movie. I am exhausted and so ready for bed but Will is going strong. :)
........
Billy did indeed leave early this afternoon. He has a very full car and our room is significantly more empty. Charlie, our pilot on the first leg tomorrow, has checked in with us and we meet him at ten at Lunken. The hospital shuttle will pick us up at 915 and drop us off at the airport. We should be in Fredericksburg in the early afternoon.
It will be very good to be home...but there is also concern. Will will have to return in a week, so we have three days of travel in less than two weeks. That could be challenging for him. I am only home for one week, and there will be lots of ground to cover in that week so it will be stressful.
There are apparently volunteers who are willing to make most of our Thanksgiving dinner and deliver it on Wednesday. That is such a huge blessing. I know I will need to go to the grocery store (I have been gone for basically a month!), prepare for yet another week long absence, order meds and IV supplies for Will for this week as well as our week of travel, make reservations for Cincinnati (AGAIN), and repack. Then there is this whole, "Did you know that Christmas is only 35 days away?" Are you SERIOUS? I can't comprehend Thanksgiving and now I have to consider Christmas. I am so in trouble. :)
So, Will and I are just about packed. We are heading home to hang out with the family for a week, and then we head back. I really should consider having a locker at the airport where I leave one set of clothes and my very essential hair dryer so I can just fly back and forth without packing the kitchen sink every time. :)
Becky G called me that morning and invited me to lunch with some women from church. It was so lovely to be normal for a few hours and to chat about life and listen to the adventures of other women and their families and to laugh with a friend. Laughter is such a gift.
I returned to the hospital and Will was finally awake and actually showered. I helped redress the stoma (the opening through which the trach was placed...it is still healing) and Mica, our nurse from the previous surgery who also was his first nurse on this trip, deaccessed his port. We were finally ready to leave. Billy and Will loaded the car while I headed to the pharmacy to pick up a few prescriptions.
We then headed to pick up new brace pads. Since Will is going to be in this neck brace at least another few months, he really needs new pads. The old ones are not so cushiony anymore and the brace is beginning to rub where it should not. We know the pads for the old, smaller brace were expensive ($50) so I expected these to be more expensive...but $200 per set??? No way! He needs the pads...so what to do. I called Will's case manager with our insurance company (insurance does NOT cover these.), but she is unavailable. The receptionist is about as apalled as I am, so she calls someone while I am on the phone with Larissa's voicemail. Alas, I have no answers, but she said that they will sell both sets to me for $200 total. Somehow that sounds so much better than $400...but still!
We leave the brace shop, and it is now 430. We are supposed to meet Becky and Keith R at Dixie Chili in Newport for dinner. Will is feeling great, so we head that direction. (We beat them there so I found a great yarn shop next door that I got to browse through!) We had such a pleasant conversation over dinner, then we headed back to the RMH.
We packed up everything we did not need so Billy could take it with him today. Then we sat down and watched the 4th Harry Potter movie. I am exhausted and so ready for bed but Will is going strong. :)
........
Billy did indeed leave early this afternoon. He has a very full car and our room is significantly more empty. Charlie, our pilot on the first leg tomorrow, has checked in with us and we meet him at ten at Lunken. The hospital shuttle will pick us up at 915 and drop us off at the airport. We should be in Fredericksburg in the early afternoon.
It will be very good to be home...but there is also concern. Will will have to return in a week, so we have three days of travel in less than two weeks. That could be challenging for him. I am only home for one week, and there will be lots of ground to cover in that week so it will be stressful.
There are apparently volunteers who are willing to make most of our Thanksgiving dinner and deliver it on Wednesday. That is such a huge blessing. I know I will need to go to the grocery store (I have been gone for basically a month!), prepare for yet another week long absence, order meds and IV supplies for Will for this week as well as our week of travel, make reservations for Cincinnati (AGAIN), and repack. Then there is this whole, "Did you know that Christmas is only 35 days away?" Are you SERIOUS? I can't comprehend Thanksgiving and now I have to consider Christmas. I am so in trouble. :)
So, Will and I are just about packed. We are heading home to hang out with the family for a week, and then we head back. I really should consider having a locker at the airport where I leave one set of clothes and my very essential hair dryer so I can just fly back and forth without packing the kitchen sink every time. :)
Thursday, November 18, 2010
Ronald Mcdonald House Charities of Cincinnati
You have heard all about Will, the hospital, our escapades here, and the people here, but you really have not heard much about the RMH.
When we stayed at the RMH last time (April), we were in the new section. Will had recently been discharged from the hospital and we were pretty exhausted. We really did not interact with anyone and we were only there a few days.
This time, however, we have been residents for more than two weeks. While Billy has slept at the hospital, I have not because my lungs so do not appreciate the incredibly dry air. So every night sometime between ten and eleven, I catch the shuttle back to the house. At this point, having caught this shuttle every night for the last ten nights, I kinda know the shuttle drivers...and they never fail to ask how William is.
When we return, we walk in the main door, and the day manager's shift is just ending. There is a board on the wall with everyone's room number, last name, and their city/state/country of origin. When you arrive, you move your little heart magnet to "in" versus "out" so they know who is in the house. But when you do, you have to walk right in front of the desk, so generally, at that point, Carol or Natalie will look up and say hello and ask about Will. It could end there, but frequently, it doesn't. I look forward to walking in at night and chatting with friends and finding out about their days...instead of walking in, talking to no one, and going to my room. To feel not quite so alone at the end of a long day makes it feel so much more like home.
Last night, I ended up taking the very last shuttle. Carol, who was supposed to have the day off, was driving. I was the only resident to ride then, so I hopped in the front and said, "What are you doing here?" She explained that Natalie had gone home sick, so Julie filled in for Natalie, and Carol filled in for Julie. So we chatted about how they were, how the food pantry organizaton was going, Carol asked about Will and his port, and she told me she had been concerned when I hadn't shown up yet, and if I hadn't been on this shuttle, she really would have been worried. Really?!
When you live in a communal home, issues can easily develop. You have residents who don't bother to clean up after themselves; residents who are ungrateful for the blessing of a nice, clean, inexpensive place to stay incredibly convenient to the hospital; and residents who are just lazy. But then you have residents like Elizabeth who give up their washing machine at ten at night because your child has surgery early the next morning and she can do her laundry the next day without it being an issue. Or Janelle who has devoted ten years to caring for her son who suffered significant brain damage in a car accident and yet she still smiles and prays for and encourages other parents. To have spent several hours chatting with these people who struggle over the health of their child yet continue to press forward, is beyond description. To know that while our struggles may not be the same, but they understand the toll it takes on not only you, your marriage, and your entire family creates a bond of friendship that is unexplainable. You don't have to explain the hardship because they also live it. While it did take effort to feel at home and to develop friendships, the result of that effort was far beyond my wildest expectation.
To say this home has been a blessing is an understatement. To say I will miss some of the volunteers/employees/residents is also an understatement. To be grateful for the opportunity to have stayed here, met these people, and shared a few hours of conversation and friendship is indescribable.
When we stayed at the RMH last time (April), we were in the new section. Will had recently been discharged from the hospital and we were pretty exhausted. We really did not interact with anyone and we were only there a few days.
This time, however, we have been residents for more than two weeks. While Billy has slept at the hospital, I have not because my lungs so do not appreciate the incredibly dry air. So every night sometime between ten and eleven, I catch the shuttle back to the house. At this point, having caught this shuttle every night for the last ten nights, I kinda know the shuttle drivers...and they never fail to ask how William is.
When we return, we walk in the main door, and the day manager's shift is just ending. There is a board on the wall with everyone's room number, last name, and their city/state/country of origin. When you arrive, you move your little heart magnet to "in" versus "out" so they know who is in the house. But when you do, you have to walk right in front of the desk, so generally, at that point, Carol or Natalie will look up and say hello and ask about Will. It could end there, but frequently, it doesn't. I look forward to walking in at night and chatting with friends and finding out about their days...instead of walking in, talking to no one, and going to my room. To feel not quite so alone at the end of a long day makes it feel so much more like home.
Last night, I ended up taking the very last shuttle. Carol, who was supposed to have the day off, was driving. I was the only resident to ride then, so I hopped in the front and said, "What are you doing here?" She explained that Natalie had gone home sick, so Julie filled in for Natalie, and Carol filled in for Julie. So we chatted about how they were, how the food pantry organizaton was going, Carol asked about Will and his port, and she told me she had been concerned when I hadn't shown up yet, and if I hadn't been on this shuttle, she really would have been worried. Really?!
When you live in a communal home, issues can easily develop. You have residents who don't bother to clean up after themselves; residents who are ungrateful for the blessing of a nice, clean, inexpensive place to stay incredibly convenient to the hospital; and residents who are just lazy. But then you have residents like Elizabeth who give up their washing machine at ten at night because your child has surgery early the next morning and she can do her laundry the next day without it being an issue. Or Janelle who has devoted ten years to caring for her son who suffered significant brain damage in a car accident and yet she still smiles and prays for and encourages other parents. To have spent several hours chatting with these people who struggle over the health of their child yet continue to press forward, is beyond description. To know that while our struggles may not be the same, but they understand the toll it takes on not only you, your marriage, and your entire family creates a bond of friendship that is unexplainable. You don't have to explain the hardship because they also live it. While it did take effort to feel at home and to develop friendships, the result of that effort was far beyond my wildest expectation.
To say this home has been a blessing is an understatement. To say I will miss some of the volunteers/employees/residents is also an understatement. To be grateful for the opportunity to have stayed here, met these people, and shared a few hours of conversation and friendship is indescribable.
Wednesday, November 17, 2010
We Have a New Address
Sorry for no update yesterday. It was another crazy day and by the time I finally got online last night, I wasn't coherent enough to actually write an update. When you envision a hospitalization, you think of sitting in a chair at your loved one's bedside, reading or knitting or chatting. That is SO not the case here. I feel like I have run a marathon at the end of the day.
So yesterday...I walked in the room and noticed that Will's blood pressure was 65/48. I promptly found the nurse and requested the bp's from the entire night. This is not a good trend. Then another member of the venous access team arrived, introduced herself, and said, "I am really good with ports." to which I responded, "You are not touching that port until someone can tell me what is wrong." I was very done being pleasant. I had requested a port study when this started, and that was denied. I had requested a chest xray that showed it was "fine". So we are gonna wait on the surgical consult which still has not appeared.
Well, the neurosurgery nurse practitioner walked in and asked how things were going. I filled her in on the blood pressure issue, the port issue, the lack of response that I felt was being provided, and this woman knew how to make things happen.
Rounds were beginning, so we walked out into the hallway and listened to the basic report of Will's last 24 hours. No one thought anything of the blood pressure issue. The attending was of the opinion that he was finally going to move Will to the floor, when the nurse practitioner caught my eye. She quickly informed him that neurosurgery was concerned about the port issue and if this child was headed for further surgery, requiring intubation after just having been trached, well...really...do we want to move him? Oh, and by the way, where is the surgical consult? At this point I am starting to cry...the attending looks at me, and I quietly inform him that after being off his IV for ten hours the previous day, we had seen a drop in blood pressure that no one caught. "Oh! That is the first sign of decompensation." Um, yeah. So he ordered a bolus of normal saline that I then stated could only run at 250 ml/hour. They have really had it so easy with him. :)
The surgery consult arrived, compared last night's xray with previous xrays and said, "Hmm...the port moved." So he orders a port study which of course requires us to access this port. I have talked to David Charles who informs me that it can be accesssed under fluoroscopy. So we agree to the port study and request an order for significant pain medication for William.
The final result is that the first nurse who tried to access it apparently missed the port and the needle punctured surrounding tissue which promptly became sore and swollen and the swelling moved the port. The port study does show that the port is fine, the swelling has reduced, and the port is back in place. It does not feel like it used to, but it can be accessed. After the port study, I looked at the CVC team and said, "What are we going to have to do to get permission for me to access this port instead of a nurse?" I have no desire to repeat the previous 24 hours.
So, the port is fine, I was able to access it, the attending was able to finally evict us from ICU, and we are now on the neurosurgery floor. He currently has hives...again...and we have no clue why. So we are grateful they have medication that helps him stop itching. :)
So yesterday...I walked in the room and noticed that Will's blood pressure was 65/48. I promptly found the nurse and requested the bp's from the entire night. This is not a good trend. Then another member of the venous access team arrived, introduced herself, and said, "I am really good with ports." to which I responded, "You are not touching that port until someone can tell me what is wrong." I was very done being pleasant. I had requested a port study when this started, and that was denied. I had requested a chest xray that showed it was "fine". So we are gonna wait on the surgical consult which still has not appeared.
Well, the neurosurgery nurse practitioner walked in and asked how things were going. I filled her in on the blood pressure issue, the port issue, the lack of response that I felt was being provided, and this woman knew how to make things happen.
Rounds were beginning, so we walked out into the hallway and listened to the basic report of Will's last 24 hours. No one thought anything of the blood pressure issue. The attending was of the opinion that he was finally going to move Will to the floor, when the nurse practitioner caught my eye. She quickly informed him that neurosurgery was concerned about the port issue and if this child was headed for further surgery, requiring intubation after just having been trached, well...really...do we want to move him? Oh, and by the way, where is the surgical consult? At this point I am starting to cry...the attending looks at me, and I quietly inform him that after being off his IV for ten hours the previous day, we had seen a drop in blood pressure that no one caught. "Oh! That is the first sign of decompensation." Um, yeah. So he ordered a bolus of normal saline that I then stated could only run at 250 ml/hour. They have really had it so easy with him. :)
The surgery consult arrived, compared last night's xray with previous xrays and said, "Hmm...the port moved." So he orders a port study which of course requires us to access this port. I have talked to David Charles who informs me that it can be accesssed under fluoroscopy. So we agree to the port study and request an order for significant pain medication for William.
The final result is that the first nurse who tried to access it apparently missed the port and the needle punctured surrounding tissue which promptly became sore and swollen and the swelling moved the port. The port study does show that the port is fine, the swelling has reduced, and the port is back in place. It does not feel like it used to, but it can be accessed. After the port study, I looked at the CVC team and said, "What are we going to have to do to get permission for me to access this port instead of a nurse?" I have no desire to repeat the previous 24 hours.
So, the port is fine, I was able to access it, the attending was able to finally evict us from ICU, and we are now on the neurosurgery floor. He currently has hives...again...and we have no clue why. So we are grateful they have medication that helps him stop itching. :)
Monday, November 15, 2010
One Seriously Long Day
This will be brief. Maybe. :)
When you have multiple specialties involved in one procedure/hospitalization, it can get challenging. Will is still in ICU because the neurosurgeon does not want him on the airway floor, ENT will then not let him out of ICU until 24 hours after the trach is out (which occurred this morning), and so this morning, they both said, "He can go home tomorrow...to Virginia." To which Endocrinology said, "Um, not only no..."
Endocrinology was called in by the previous ICU attending (They change each week.) so that Will would have some level of continuity of care when leaving the ICU. Dr. T at home had emailed the previous attending to provide a level of instruction regarding how to care for Will. The two points that were reiterated were, "Move slowly. Do not be in a rush to discharge him." and "Listen to Mom." Oh, well, that is a vote of confidence I am just not sure is wisely placed. :)
Will is still on TPN and is taking in less than 300 calories a day. He needs to orally consume 2600 calories, or at least close to that, in order to completely come off TPN, according to endocrinology. So they have decided to slow the rate of TPN, encourage Will to eat more, and watch him. The duration of observation is a complete unknown.
The major issue of the day...the needle in Will's port through which all of his tpn and fluids go has to be changed weekly. So, today was the day. He was deaccessed, took a shower (Oh, he looks and smells so much better!), and then he was supposed to be reaccessed. When the nurse started to reaccess him, she inserted the needle, there was a pop, and Will started crying. This child does NOT cry over being accessed. He seldom even flinches. But he was crying. She kept trying to adjust it, and I finally told her to remove it. She did, then called the special team who works on central line access. Pam arrived and eventually the decision was made to once again attempt to access. So, she offered for me to help since I access him three or more times a week. Well, when I felt around his port to actually insert the needle, the port felt funny. (It is totally under the skin; you don't see it.) I could not find its edges like I normally do, and the top felt odd. I had no desire to put a needle in Will when I could not guarantee success, so Pam tried. It was yet another disaster. We eventually went for a chest xray, which showed that the port is in the correct location. So tomorrow morning, we will talk with a surgeon to determine what our options are. This is not a complication that I even contemplated. We cannot leave Cincinnati without IV access.
So, they had to start a peripheral line (a regular IV in his lower arm) in order to restart the TPN and fluids. It took three attempts to make that happen.
Needless to say, it was a very long day.
So tomorrow, we meet with the surgeon, and we will likely be moved to the neurosurgery floor til everyone agrees to discharge us. Apparently, they want us back in two weeks from today for follow up. So if we don't get out until later this week, and we have to be back ten days later...do we stay or do we travel twice? What can Will handle? Stay tuned for tomorrow's episode of' "As Will's World Turns."
When you have multiple specialties involved in one procedure/hospitalization, it can get challenging. Will is still in ICU because the neurosurgeon does not want him on the airway floor, ENT will then not let him out of ICU until 24 hours after the trach is out (which occurred this morning), and so this morning, they both said, "He can go home tomorrow...to Virginia." To which Endocrinology said, "Um, not only no..."
Endocrinology was called in by the previous ICU attending (They change each week.) so that Will would have some level of continuity of care when leaving the ICU. Dr. T at home had emailed the previous attending to provide a level of instruction regarding how to care for Will. The two points that were reiterated were, "Move slowly. Do not be in a rush to discharge him." and "Listen to Mom." Oh, well, that is a vote of confidence I am just not sure is wisely placed. :)
Will is still on TPN and is taking in less than 300 calories a day. He needs to orally consume 2600 calories, or at least close to that, in order to completely come off TPN, according to endocrinology. So they have decided to slow the rate of TPN, encourage Will to eat more, and watch him. The duration of observation is a complete unknown.
The major issue of the day...the needle in Will's port through which all of his tpn and fluids go has to be changed weekly. So, today was the day. He was deaccessed, took a shower (Oh, he looks and smells so much better!), and then he was supposed to be reaccessed. When the nurse started to reaccess him, she inserted the needle, there was a pop, and Will started crying. This child does NOT cry over being accessed. He seldom even flinches. But he was crying. She kept trying to adjust it, and I finally told her to remove it. She did, then called the special team who works on central line access. Pam arrived and eventually the decision was made to once again attempt to access. So, she offered for me to help since I access him three or more times a week. Well, when I felt around his port to actually insert the needle, the port felt funny. (It is totally under the skin; you don't see it.) I could not find its edges like I normally do, and the top felt odd. I had no desire to put a needle in Will when I could not guarantee success, so Pam tried. It was yet another disaster. We eventually went for a chest xray, which showed that the port is in the correct location. So tomorrow morning, we will talk with a surgeon to determine what our options are. This is not a complication that I even contemplated. We cannot leave Cincinnati without IV access.
So, they had to start a peripheral line (a regular IV in his lower arm) in order to restart the TPN and fluids. It took three attempts to make that happen.
Needless to say, it was a very long day.
So tomorrow, we meet with the surgeon, and we will likely be moved to the neurosurgery floor til everyone agrees to discharge us. Apparently, they want us back in two weeks from today for follow up. So if we don't get out until later this week, and we have to be back ten days later...do we stay or do we travel twice? What can Will handle? Stay tuned for tomorrow's episode of' "As Will's World Turns."
Sunday, November 14, 2010
You Guys Are Still Here?
This morning started off pretty rough. The ENT team rounds around 645, so we knew the trach change would be early. So we had a game plan. At 6, Will was to receive his oral pain medication and just before the team started to work on the trach, he was to receive a different narcotic in his IV. Well, apparently he did not actually go to sleep until 4 am, so rousing him at 6 was a challenge.
So, the team came in, IV pain meds were administered, and the smaller diameter, shorter trach was inserted in place of the first one. Everything was fine. For five minutes. The team left. Will moved in bed. I noticed that an awful lot of the tubing was visible. Hmmm...I head for the nurse. By the time I am back in the room, the tube is totally out. This is not the way it is supposed to be!
The nurses and RT arrive quickly. They reinsert it and call the ENT team. The fellow arrives and decides that a longer trach is needed. Ya think? :) There is a discussion as to which new one to choose. The diameter needs to remain the same, but it needs to be longer than the current unstable one. They finally decide, replace it again, and we are finished. A little excitement goes a long way.
And then there was tonight. Almost exactly 12 hours after this morning's fiasco, the trach is again out. Apparently Will has a significantly sized trachea, the stoma (the hole that they made for the trach to go through into the airway)is large, and the trach is small.
Needless to say, Anna, our nurse from earlier in the week, popped in and said, "So ya wanted to end the day the way you started it?" Um, it wasn't OUR plan. :)
The trach is back in. The ENT fellow arrived...again...and scoped his airway...again...and stated that there was some trauma (meaning irritation: bleeding and redness) in the airway from the irritation. The decision to remove the trach will be made in the morning.
Will is still on TPN for nutrition. He just is not taking in many calories. There is discussion on whether he will be discharged on TPN or whether he will stay inpatient til he chooses to eat. Once the trach is out, we will be moved out of our very nice spacious room to the regular neurosurgery floor. From there, the endocrine doctors will begin to follow Will's progress. Dr. T at home has sent a note to Will's physicians here, and the ICU physician wants more than a pediatrician to follow him once Will leaves her jurisdiction.
So, at the moment, we have no clue when we will be moved from ICU but anticipate it to be Monday or Tuesday. Being discharged from the hospital is not even being discussed right now, so I have no clue when we will be home. Until then, we hang out in the hospital room, I sleep at RMH, and we wonder why we are so tired. :)
We are thankful that this has been a fairly straightforward hospitalization. Progress may be slower than anticipated, but I can only imagine how slow it would have been if the full scope of the surgery had been performed. We are very grateful for cautious physicians who respect the typical instability of William's metabolic balance and are doing their utmost to avoid an epic crash.
So, the team came in, IV pain meds were administered, and the smaller diameter, shorter trach was inserted in place of the first one. Everything was fine. For five minutes. The team left. Will moved in bed. I noticed that an awful lot of the tubing was visible. Hmmm...I head for the nurse. By the time I am back in the room, the tube is totally out. This is not the way it is supposed to be!
The nurses and RT arrive quickly. They reinsert it and call the ENT team. The fellow arrives and decides that a longer trach is needed. Ya think? :) There is a discussion as to which new one to choose. The diameter needs to remain the same, but it needs to be longer than the current unstable one. They finally decide, replace it again, and we are finished. A little excitement goes a long way.
And then there was tonight. Almost exactly 12 hours after this morning's fiasco, the trach is again out. Apparently Will has a significantly sized trachea, the stoma (the hole that they made for the trach to go through into the airway)is large, and the trach is small.
Needless to say, Anna, our nurse from earlier in the week, popped in and said, "So ya wanted to end the day the way you started it?" Um, it wasn't OUR plan. :)
The trach is back in. The ENT fellow arrived...again...and scoped his airway...again...and stated that there was some trauma (meaning irritation: bleeding and redness) in the airway from the irritation. The decision to remove the trach will be made in the morning.
Will is still on TPN for nutrition. He just is not taking in many calories. There is discussion on whether he will be discharged on TPN or whether he will stay inpatient til he chooses to eat. Once the trach is out, we will be moved out of our very nice spacious room to the regular neurosurgery floor. From there, the endocrine doctors will begin to follow Will's progress. Dr. T at home has sent a note to Will's physicians here, and the ICU physician wants more than a pediatrician to follow him once Will leaves her jurisdiction.
So, at the moment, we have no clue when we will be moved from ICU but anticipate it to be Monday or Tuesday. Being discharged from the hospital is not even being discussed right now, so I have no clue when we will be home. Until then, we hang out in the hospital room, I sleep at RMH, and we wonder why we are so tired. :)
We are thankful that this has been a fairly straightforward hospitalization. Progress may be slower than anticipated, but I can only imagine how slow it would have been if the full scope of the surgery had been performed. We are very grateful for cautious physicians who respect the typical instability of William's metabolic balance and are doing their utmost to avoid an epic crash.
Saturday, November 13, 2010
What Day Is Today?
The days have officially begun to blur. But whatever day it is, Will is doing significantly better.
This morning, I arrived just in time for rounds where basically they said, "Goals for today: Status Quo." We basically are hanging out in ICU waiting for the trach to be downsized. I have no idea when they will move us out to the floor. We love our nurses (all but one) and are content with their level of vigilence, so moving out means ratcheting back up the level of caution that we feel in dealing with Will's issues.
When I walked into the room, Will was smiling and said, "Hi." No way. The boy spoke. There goes the silence! He doesn't talk a lot because it does take effort, but he is slowly becoming his goofy self. Not long after I arrived, though, both Billy and Will fell asleep. I sat here quietly knitting, watching them both sleep, until I finally decided to head back to RMH to wash the increasingly large pile of clothes.
At RMH, we are responsible for caring for our room. General cleaning and laundering of linens is our responsibility. Our sheets and towels had kinda been neglected for about ten days, so they were washed as well. It is amazing how normal activities are not all that "normal" for me.
When I headed back to the hospital, Will was sitting in a chair watching something on his computer. We hung out for a while then Billy and I ate our dinner in the parents' lounge. Parents are not allowed to eat in the ICU rooms. When we returned, Will actually signed that he was hungry. (Those old days of signing with Ben have been incredibly useful recently!) We ordered up some soft foods and after two bites he decided to go back to liquids. Coughing food out of your airway is challenging. :( So we have now ordered a protein shake that they make specifically for William. Speech pathology will visit Will on Monday and help him figure out how to eat again. Until then, he can have all the smoothies and iced tea he wants. Just no Five Guys burgers. :)
There are several steps involved in removing the trach. The first is to occur tomorrow morning. The ENT team will change out the actual trach tube and put in a smaller one. If this goes well, then they will install a valve, then they will totally plug it to see how he does. Each step requires 24 hours of observation.
The hospital air here is extremely dry which is causing me issues at the moment. My asthmatic lungs are getting pretty irritated. The time spent cleaning and doing laundry today at the RMH helped immensely. It doesn't hurt to breathe anymore, but the more time I spend in Will's room, the harder it gets which makes life a little challenging. Billy has been really helpful and has encouraged me to sleep at the RMH instead of in Will's room, so except for the first night, Billy has handled all of the nights. It has been really strange to leave Will at the hospital, but I have been grateful for the rest and the reprieve. I did not realize how much I had been holding my breath, metaphorically speaking, until today.
So, another day passes with a beautiful sunset outside of our ICU suite. (We totally have the best room in the entire hospital! It is like a hospital room with an attached sunroom.) The thought of leaving our comfy nest and our nurses whom we love is sad indeed. Home sounds wonderful, but another room without the spacious, sunny accommodations will be an unwelcome change. :)
This morning, I arrived just in time for rounds where basically they said, "Goals for today: Status Quo." We basically are hanging out in ICU waiting for the trach to be downsized. I have no idea when they will move us out to the floor. We love our nurses (all but one) and are content with their level of vigilence, so moving out means ratcheting back up the level of caution that we feel in dealing with Will's issues.
When I walked into the room, Will was smiling and said, "Hi." No way. The boy spoke. There goes the silence! He doesn't talk a lot because it does take effort, but he is slowly becoming his goofy self. Not long after I arrived, though, both Billy and Will fell asleep. I sat here quietly knitting, watching them both sleep, until I finally decided to head back to RMH to wash the increasingly large pile of clothes.
At RMH, we are responsible for caring for our room. General cleaning and laundering of linens is our responsibility. Our sheets and towels had kinda been neglected for about ten days, so they were washed as well. It is amazing how normal activities are not all that "normal" for me.
When I headed back to the hospital, Will was sitting in a chair watching something on his computer. We hung out for a while then Billy and I ate our dinner in the parents' lounge. Parents are not allowed to eat in the ICU rooms. When we returned, Will actually signed that he was hungry. (Those old days of signing with Ben have been incredibly useful recently!) We ordered up some soft foods and after two bites he decided to go back to liquids. Coughing food out of your airway is challenging. :( So we have now ordered a protein shake that they make specifically for William. Speech pathology will visit Will on Monday and help him figure out how to eat again. Until then, he can have all the smoothies and iced tea he wants. Just no Five Guys burgers. :)
There are several steps involved in removing the trach. The first is to occur tomorrow morning. The ENT team will change out the actual trach tube and put in a smaller one. If this goes well, then they will install a valve, then they will totally plug it to see how he does. Each step requires 24 hours of observation.
The hospital air here is extremely dry which is causing me issues at the moment. My asthmatic lungs are getting pretty irritated. The time spent cleaning and doing laundry today at the RMH helped immensely. It doesn't hurt to breathe anymore, but the more time I spend in Will's room, the harder it gets which makes life a little challenging. Billy has been really helpful and has encouraged me to sleep at the RMH instead of in Will's room, so except for the first night, Billy has handled all of the nights. It has been really strange to leave Will at the hospital, but I have been grateful for the rest and the reprieve. I did not realize how much I had been holding my breath, metaphorically speaking, until today.
So, another day passes with a beautiful sunset outside of our ICU suite. (We totally have the best room in the entire hospital! It is like a hospital room with an attached sunroom.) The thought of leaving our comfy nest and our nurses whom we love is sad indeed. Home sounds wonderful, but another room without the spacious, sunny accommodations will be an unwelcome change. :)
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