Monday, November 29, 2010

My How Time Flies

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.

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 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 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.

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, 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 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 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.

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. :)

Friday, November 12, 2010

Post Op, Day 3

I walked in this morning, and William was just falling asleep. Billy stated that although last night's nurse was significantly below the typical standard, Will had had a good night...a restful night. Cool. He looks so much better this morning. I think we finally turned that corner that says, "I think we may survive this after all."

Dr. C, the neurosurgeon, ordered physical therapy for Will, so he was hooked up to portable monitors and walked around the unit a couple of times. His sense of humor, long absent, is slowly beginning to resurface. He pretended to wobble a couple of times and then grinned when the physical therapist went to grab him. He is far from his normal self, but an occasional glimmer of Will is encouraging. He also donned pajama pants and a t-shirt for his excursion, so ditching the lovely hospital gown I am sure makes him feel somewhat better.

Will has officially given up on talking with the trach which is difficult with no valve, is difficult. The energy required to do so is significant. So, he communicates with sign language and a white board. Some of his signs are entertaining. Yesterday he was asked a question and waved his arms around, which made zero sense to us, but it was really funny. I'm not so sure he appreciated our amusement. The white board is a huge benefit, though, because he can tell us what he needs/wants. But I must admit that it is extremely odd to be in a room with him and for there to be no chatter. All we hear in here is his humidifier, his cough, and the occasional noise outside. Silence is not a normal part of our lives!

Food remains an issue. He is totally not interested. No one is in a hurry to rush him, so for now, he is to remain on tpn and we will let him decide when he is ready to eat. A 14 yo boy will not long survive without a bacon cheeseburger, so I don't expect that the trail to Five Guys will grow too cold.

Will was running a healthy fever yesterday, so they did run some cultures. He does have an infection, but given that the surgery was in his mouth, that is so not surprising. They have started antibiotics and anticipate that the infection will resolve.

It is really difficult to remember all the things that transpire throughout the day, and I tend to write the updates after 8 pm, so hopefully you get the sense that progress is being made, but we are still far from home. We won't be moved out of ICU until at least Sunday, the trach will be in until at least Tuesday, and I imagine that we will have to stay til that is fully resolved which could be up to 7 days after it is removed. That puts us eerily close to Thanksgiving before being able to travel. Billy and my anniversary (25 years!) is the 23rd, so it looks like we may/may not even be in the same state then. While all of that is disheartening, it is with relief and joy that we can watch the progress and realize that this surgery, long dreaded, is officially behind us. So now we wait to see what effect it will have on his overall condition...

Thursday, November 11, 2010

Post- Op, Day 2

Last night, I had a sore throat...the kind of sore throat that says, "You are officially doomed for a lovely cold." I was so frustrated, I but knew that I really needed lots of Vitamin C and some real sleep. Billy escorted me downstairs, and a security guard walked me to the Ronald McDonald House where I promptly fell soundly asleep.

This morning, the sore throat is not gone, but I have had thousands of milligrams of Vitamin C and am hoping that this will pass without developing into something ugly. Getting sick right now would be really bad timing.

So I arrived at the hospital with a cup of hot tea and found that Will had had a pretty difficult night. The secretions from the trach are causing him a fair amount of grief, and at one point, he just could not clear them from his airway. The respiratory therapist on duty last night was wonderful and stayed and worked with Will til things were more stable.

Overall, Will has had a better day and is slowly coming back to life, but the pain medication issues have been a challenge. They switched him to Dilaudid yesterday, still a narcotic but longer lasting than what he had been on. However, upon administering it in his IV, he complained of about ten seconds where his whole body felt like it was burning. Then he broke out in hives which lasted about 45 minutes. They then switched his med again, to an oral liquid med, but again he had hives. So the pain team was once again called.

The doctor in charge of his pain meds basically stated that unless Will's reaction was anaphylactic, then we should not list the reactions as allergic. They are frequent side effects that can be treated with an additional drug. My only concern is that if his body is utilizing energy to deal with a reaction, then that is energy that he doesn't have elsewhere. Since his body doesn't make sufficient energy on a good day, do we really want to present him with an additional challenge? Ah, the joys of specialists who see only their specialty.

So, we did give Will the pain med in a pill form, hoping that the reaction may have had to do with an additive in the liquid. So far, he is doing well. He is struggling with belly pain, but that could be his gut waking up. (Anesthesia slows the gastric tract way down.)

So, tonight, I am being once again sent to the RMH to sleep in the hope of not becoming truly ill. Billy is doing an amazing job helping Will with his trach and in general care. No 14 year old boy wants his mama to help him to go the bathroom.

In general, Will is doing better. There are still plenty of challenges that need to be addressed before we can leave the ICU...things like actually eating. He is still on tpn which is basically nutrition that they administer through his port. There is also the pain management issues as his pain is an ever moving target. Also, as the fluids from surgery leave his body, and his pain lessens, we will need to watch his blood pressure to ensure that it remains stable.

Becky R brought us an amazing dinner, but we hardly got to see her as she arrived as the pain team and the orthopedic walked in.

So, that is our day in a nutshell. Each day should get a little easier...Tomorrow we will hopefully conquer some food issues, which include learning how to swallow food down the right hole. The trach changes the pressures when you swallow, and his palette now has a different shape, so that affects eating and drinking. Today he conquered drinking which was huge. (Think about how you drink through a broken straw. That is somewhat the way he is having to function...)

Wednesday, November 10, 2010

Recovery is Challenging

So last night, Will struggled with his trach. He felt like he couldn't breathe. After lots of suctioning and a sedative, he finally slept for a little while. He has essentially given up on trying to talk with it, and is now using a white board and marker. While slow, it takes a lot less effort and is much easier for everyone else to understand.

At this point, we still have no idea if Will will be discharged with his trach or not. The ENT resident today stated that they will reduce the size of the trach tubing on Sunday. That will make it easier for him to swallow and talk.

Overall, Will has started shutting his eyes when people come in to chat...and lots of people are in and out of his room. This place is like Grand Central Station today. Speech therapy wants to ensure that he can swallow safely with the change of palate and the trach, every specialty has their own residents who visit, then the entire team of residents visit. With three different specialties and the regular ol' pediatric ICU residents, we see lots of residents. Pharmacy has visited trying to determine how to manage his meds since he doesn't wish to swallow. Nutrition is in preparing for when he will be able to eat and trying to figure out what he can eat as well as figuring out the TPN (nutrition that they will put into his port tonight to at least give him calories) for tonight. The pain management team is in as they adjust his medication to keep him comfortable. His nurse is in regularly (read as in constantly) to suction the trach and help care for William. That leaves very little downtime. It also means that Will is more than done listening to everyone talk about him and discuss how difficult this is. So, he is now sitting in a chair, watching Discovery channel, and closing his eyes when people want to chat with him...."If I don't see you, you don't exist."

Yesterday is still fresh in our minds as we contemplate the incredibly gift of a much less invasive surgery. The fatigue of today is very present. While yesterday was filled with relief and thanksgiving, the reality is that this was still a huge surgical procedure with a huge recovery. Preventing a metabolic crisis is still high on the list of wishes for the day.

Thank you for the prayers and encouragement that have been emailed, mailed, and texted. To know that we are loved, supported, and prayed for is a huge encouragement.

Tuesday, November 9, 2010

What a Long Day

We have spent almost an entire year waiting for today's surgery. It is so hard to believe that it is actually over.

While we had been told that they were going to split his tongue, lip, and lower mandible, they did not. What an amazingly huge blessing. When Dr. Bilmeier came to talk with us, he said, "I have some good news." That is not something we generally have in abundance. But this really was huge. They did go through the upper/back of the palate, so that is very sore. Will does have a tracheostomy, so that has a whole new set of challenges. But his face is not at all disfigured. The only drawback at this point is the realization that he may need further surgery to repair his palate. As things heal, he may develop a nasal, cleft palate type of speech...which they can correct. So overall, this was very good news. The recovery will be significantly easier.

Will has quickly learned how to cover the trach opening so he can talk. He is difficult to understand, but is learning how to manage it. He also can fingerspell, so that was handy in the beginning.

We had lots of company today so we were never alone. Becky G came with an amazing lunch. Matt joined us. Then Beth P also hung out with us. Surgery ended, they all left, and we waited for him to head to ICU. While we waited, Becky R brought Olive Garden (pasta!) for dinner. We never had to think about food and were totally distracted with friends and great conversation. It amazes me (and those with whom we come into contact) how the body of Christ has supported and loved us through no merit of our own.

So we finally got to see Will. He started finger spelling but decided that was painfully difficult and quickly became expert at covering the trach so he could talk. He never misses a beat. What he goes through and just keeps coping is astounding.

We skyped with the kids back home who were also able to say hi to their brother. That was very cool...we are so glad that this hospital is finally wireless!

We are in ICU in a corner room that the nurse laughs and calls a suite. It is a huge room with huge windows and an amazing view of the sunset.

Will is resting fairly comfortably. He did evict the contents of his stomach once, but zofran quickly fixed that problem. :) What a great drug. Billy and I are exhausted and are going to crash soon. The room is huge, so we are actually able to both stay...

Surgery Update

For those on our church's prayer chain, excuse the redundancy. Under the circumstances, it was expeditious to copy and paste. More will follow as time and opportunity exist.

The tracheostomy was completed. No clue how long he will have the trach, but we know a minimum of five days.

Huge blessing: The plastic surgeon did not have to deconstruct the jaw, so minimal disfigurement has occurred, and the recovery should be easier.

The bone that they had to remove was apparently soft. No one knows why. But the remaining structures appear normal.

We are waiting on the plastic surgeon to close. Due to the opening that he had to create, there may be need for further surgery as a speech deficit may occur. Time will tell.

So, overall, things went very well...better than anticipated.

Billy and I were blessed beyond measure...Becky brought lunch and stayed throughout the majority of the surgery which kept me from crying all day. It was a relief to laugh and not contemplate what was happening with William. Matt, pastor of Faith Pres, stayed with us as well. We even had another acquaintance drop by and visit briefly. To be so far from home and have such support is truly a gift of God and a testimony to the body of Christ. We are indeed blessed.

Monday, November 8, 2010

It is Just Getting Started

Will is officially a resident at Cincinnati Children's Hospital Medical Center. He has his lifeline reattached, IV l-carnitine being delivered on a regular schedule, CT scan completed, and now we wait. Surgery is scheduled for 730 AM and will go all day.

We were escorted to our room, and in walked Mica, our favorite nurse from last time. She remembered us which was very cool. Will was in rare form, harassing the poor residents and nurses, but Mica can hold her own against him. The neurosurgery resident was not at all confounded by Will's antics, so Will has a tough audience this go round. :)

Since it is the last meal he will have for a while, we picked up some 5 Guys for him and brought it to the hospital where he proceeded to inhale it, literally, in about six bites. How does he do that??? Why do teenage boys become human vacuum cleaners? I know that I taught them manners, but somehow between the ages of 13 and 20 they seem to see food and all rational thought of careful chewing flies from their heads!

So we are hanging out in Will's room, watching the clock tick, and considering which game we might play. There is a football game on tonight, so I did pull rank and tell him what we were going to be doing at about 830. However, I need to head back to the RMH to handle some laundry so he may escape the football game after all.

Billy will stay with Will tonight. I am actually going to sleep at the feels a bit odd to leave Will at the hospital, but on the other hand, I am so very tired. The last few weeks have been so challenging and the sleep so limited, and this phase is just getting started.

Thank you so much for the prayers, emails, cards, gift cards, phone calls, and support. We are astounded and so grateful. While sometimes this physically is a very lonely experience, we know that we are not alone. Thank you for walking this road with us, even through the dark, spooky forest. :)

Sunday, November 7, 2010

What did you say? Would you please look at me?

Those are words I have heard a lot over the last week.

I had not really noticed a huge change prior to this trip, but then, we hadn't really walked around much. We seemed to have had a lot of face to face chats. I had noticed what appeared to be rudeness...Will talking over other people. But on this trip, if we are walking side by side, Will just could not hear me unless I turn my head and talk directly to him.

I finally asked him about it today. His response was a matter of fact statement that he had noticed the change but hadn't said anything. Are you serious?! This is not the kind of thing that you don't just not mention. So, yes, in locations with lots of background noise or if someone isn't facing him, then he struggles to hear what they are saying. He doesn't feel like he has fluid in his ears, muffling his hearing. He just is struggling to hear.

So, just one more item in a long list of concerns...

We head to the hospital at noon tomorrow for admission. They will be starting his IV of D10 1/2 normal saline and IV l-carnitine. He has a CT scan at 3. Surgery is at 9 am Tuesday.

Billy is enroute now. Thanks to a couple of tractor trailer accidents, he will likely not arrive until around 1 am. He is having a bit of a long day...

Saturday, November 6, 2010

Home is Where the Heart Is...

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.

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 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.