Saturday, October 30, 2010

There's No Place Like Home, Toto

With strong instructions to appear at the sleep study Sunday night, Dr. T discharged us Friday. Her presumption is that Will's bp must be dropping every night at 4 am. One of the doctors who worked at MCV in their sleep study department is now at Cincinnati Children's Hospital, so if we need any follow up before the surgery, Dr. T's office will arrange to have us seen while in Ohio later this week. So, she has approved us for travel and for surgery.

At about the time of discharge, I received the call from Angel Flight. We have a flight to Cincinnati Tuesday. Our return is still uncertain, but since the date of our return is uncertain, I am not worried about it.

Upon our arrival home, Erlene had made dinner (for which I was so thankful...I have hardly slept all week!), and Charlene graciously rescheduled, then waited for me to show up for, my haircut. (Never underestimate the power of a haircut when exhausted.) :) I walked in the door, she hugged me, I cried, and she said, "Red or white?" I laughed, realized I would be there for an hour, and said, "Red." I had a good cry, a great hair cut, a glass of wine, and was able to breathe. What a long week...

Our IV company delivered all of our IV supplies for the coming ten days. Ever seen a styrofoam cooler the size of a footlocker? Well, it is sitting in the middle of my kitchen. So, apparently I am going to have to get all of the laundry washed, dried, boxed, and shipped to our hotel because there is no way we will make our weight limitation due to medical supplies alone.

My computer battery is the last thing I wanna say is thank you. We have been immeasurably blessed. While this was an unbelievably difficult week, our physical needs were met with such grace and extravagance. We not only have an incredible blender and sufficient financial resources with which to make the trip comfortably, but I bought zero meals at the hospital. My son-in-law made me an amazing breakfast twice, a friend brought stew and played the Wii with Will (and enough food to feed an army!), and another friend supplied Subway. So not only were the physical needs met, but the emotional support represented by each was huge. To know that we are loved and cherished is a gift immeasurable. The hospital can be a very lonely place. Thanks seems insufficient...

Friday, October 29, 2010

Tomorrow...Tomorrow...We will go home...tomorrow.

It is always a day away.

The 4 am drop in blood pressure that created the need for another bolus of fluid is likely going to cause a cancelation of our discharge. They said maybe we could go home tonight...and maybe not. We are waiting on Dr. Teasley to make that call.

She is fabulous, our Dr. T. Everything she is doing is to help Will successfully arrive in Ohio in time for his surgery. I am grateful for her steadfast determination and care for Will. But it is so discouraging to "know" you are going home in the morning and then...not.

The area in which we reside has zero windows. Neither of us has walked out of the hospital since we arrived Monday. Time has a way of standing still and marching on all at the same time. Will woke up from a nap a couple of days ago and said, "It is nighttime?" Yes. It was 8 PM.

So when we do finally get our walking papers, then I will let ya know.

Thursday, October 28, 2010

The Sun'll Come Out Tomorrow...Tomorrow...No, Tomorrow...

We are being discharged tomorrow...or at least that is what I hear...but I have heard those words since...Tuesday night. :) However, this time, I think it might actually happen.

Will's bp dropped again at 4 this morning. Another bolus was run and an hour later, it was still low. So, I suggested we run it a little faster and it started to climb. We doubled one of his bp meds, and finally, it is holding. As a matter of fact, it is holding at a level that we have not seen in a couple of years.

So since Saturday, he has had about 24 liters of fluid, loads of meds, and is finally returning to baseline. Surgery is still on. He will require a liter and a half of fluid a day while we are gone, though, to maintain his baseline. I have three days to get it all organized.

It has been a wild month. We had one trip to Ohio two weeks ago. Last week we had the grandkids and drove 740 medical miles and then drove to Scottsville to help Chelsea move. This week, Will and I lived at MCV. He and I leave Tuesday for as much as three weeks and arrangements for everything are very much incomplete. My younger kids wonder if I have moved. The older kids have become amazingly self sufficient. Erlene has totally stepped in and managed daily life for the littles. Angie continues to wash linens that never seem to otherwise get done. Friends and acquaintances and people totally unknown to us have made all of this a little more financially and emotionally bearable. So while it seems insanely overwhelming and exhausting, there are all of you holding up our arms and helping to carry the load for which I personally am so very grateful.

Wednesday, October 27, 2010

Hold that Thought

So we are not going home as hoped. Will's little blip is now a big blip. His bp is a bit unstable and he is not feeling well and is no longer eating. So, labs are being run, antibiotics started, nebs every 4 hours, and yet more fluids. The three liters a day is being supported by an additional 1/2 liter as needed.

We really have no clue what is going on other than he is simply unstable and we get to continue hanging out here with some cool nurses and our favorite doctor. Billy will bring the littles down this evening so I can see them and he can hang with Will for a little while.

Hanging out in MCV...

We are still inpatient at MCV in their Progressive Care Unit. The first night here was fairly quiet, but last night was very much not. Our "neighbor" in the curtained area next to us is a bit unhappy and the aunt staying with her is not all that patient.

Our nurses on the floor have been phenomenal. We really have been blessed. They listened when I was concerned, hugged me when I cried, and handled Will with humor and graciousness. William's blood pressure can be challenging to maintain. With the large influx of fluids, it should have been totally stable, but yesterday afternoon, we saw a drop beginning. The nurse called the resident who said she wasn't worried about the numbers. I, however, saw that Will was fading and said, "Um, yeah. Not a good answer. He needs an influx of fluids despite the vast quantities he has received." The nurse quickly called the doctor back who ordered half a liter of normal saline and within the hour, Will was cracking jokes and was ridiculously giddy. Yeah, this is the kid we know and love. So, why he needed a bolus of fluid after receiving so much fluid is really beyond my understanding. It will be good to chat with Dr. Teasley this morning.

On a side note, Dr. T is ordering a new sleep study. She has an associate who read an article regarding sleep apnea and its correlation to POTS and immediately thought of William. So they are trying to get a new sleep study ordered for Will before we head to Ohio. She simply has never agreed with the diagnosis Will received from the sleep study we had performed. Due to the brain compression, he should have central sleep apnea. In other words, his brain is not telling his muscles and lungs to breathe when he sleeps. However, he was diagnosed with obstructive sleep apnea. So she wants Will to see her associate for an evaluation that she trusts.

We hopefully will be discharged today. We should know in a couple of hours. Hopefully yesterday's blip will not delay our return home...

Monday, October 25, 2010

This was not what I had planned for my day!

Will is enjoying the hospitality of the PACU at MCV. We saw Dr. Aaronson this morning, had lots of lab work run, then talked to Dr. Teasley. She concluded that Will needed to be admitted so they could hydrate him and give IV Levocarnitine.

We are in the PACU which is their progressive unit, or the unit that is below the ICU in terms of level of care. It is a big room with multiple curtained "rooms" which aren't rooms at all. So, it is a bit noisy in that you hear everything with all of the other patients and their televisions, monitors, and conversations. So restful it isn't. However, the nurse's station is literally five steps away so should we have a crisis, help is right there.

I am exhausted. Will is tired, so we are ready for sleep. We will be awakened probably every two hours for lab work, additional fluids, medication, or vital signs. It is gonna be a long night.

As we try to resolve the metabolic crisis, we are looking forward toward Cincinnati next week. We hope to fly out next Tuesday, the 2nd. However, if we cannot resolve this quickly, the surgery will be postponed. It took three months to obtain a date this time, so another three months is just not helpful...the progression just continues...

Saturday, October 23, 2010

I love modern least most of the time. I am sitting in the van (NOT driving!!!) logged on to the internet thanks to my new phone and Verizon's graciousness of providing two free months of using my phone as a mobile hotspot. This is very sweet. :)

We are on our way to Scottsville, albeit much later than planned, to help Chelsea and Roman move. We have had the girls since last Saturday and they are totally exhausted. Chloe likes to awaken before dawn at my house, so she and Emily are currently sleeping really well in their car seats. Will is traveling with an IV since he is just not feeling well. We have packed an extra bag of fluids for him, but hopefully we won't need them.

We are supposed to head back to Ohio in a little over a week. This past week was spent seeing Dr. T to discuss Will's current condition and to make plans for the coming two months. We would really like to avoid another metabolic crisis like the one that caused our tour of hospitals. I once again asked her if we had to go through with this surgery. Her response was so disheartening. His upper extremity reflexes were gone several months ago, and now the lower extremity reflexes have deteriorated. We have no choice but to continue forward and pray for the best. Ugh. I truly hate that answer. We have no choice but to move forward but we have no guarantees. We have hope, but no guarantee. I know that this is where faith comes trust that the Lord is in total control of this and we have but to follow the path that He has established, but the mom in me is just screaming on the inside.

We also met with a new cardiologist. This particular cardiologist was the one who evaluated Caroline's heart murmur and actually had a grasp of mito, POTS, and Ehlers-Danlos. (My favorite statement is that he could use mitochondrial disease properly in a sentence.) :) He cleared Will for surgery and is also going to send a letter to the neurosurgeon to recommend that William remain on hydration therapy (an IV) the entire time he is inpatient.

This week we see Dr. Aaronson for Will's pediatric pre-op appointment and finalize preparations for Ohio. We have requested an Angel Flight for Nov 2, need to discuss nutrition issues with CCHMC for Will postop (a wired jaw and food allergies are gonna make this interesting...), and still need to make arrangements for the older boys for while Billy and I are both in Ohio. There are a bazillion other details like organizing Will's schoolwork, ordering IV fluids for the week we are in Ohio before surgery, organizing our lodging until we can get into the Ronald McDonald House (takes about five days on the waiting list to get a room), and determining whether I can afford a new blender. Researching how to give Will decent (healthy and tasty) food while his jaw is wired shut is going to be a bit time consuming. If anyone has great soup recipes that don't look absolutely disgusting when blended;, don't contain milk, corn, or soy; and don't take all day to create, please send them my way! If you have a soup recipe that tastes like a hamburger, then that would be totally ideal. :)

Will does know about this upcoming surgery. He handled the information amazingly well...I pray he isn't internalizing it all. All he said was, "It is only for six weeks, right?" regarding the jaw being wired shut. Lord willing. We did laugh and chat about how he could practice his ventriloquism technique while he is wired. Is this a case of "we either laugh or we cry?" I'm not sure.

Tbis past week was 740 miles long (not counting the drive to Chelsea's today). We normally hike in the Shenandoah Park on Halloween, then have a campfire. This year that is looking so uncertain. Will cannot hike six miles, so we are going to have to find a new tradition...This coming week is a bit crazy in preparing to leave again, but hopefully it won't be nearly so crazy as this past week. Will is not feeling well, so I am praying that he isn't going to become really sick. That would require a postponement of the surgery. It took three months to get this date...

Tuesday, October 12, 2010

Showers of Blessings

The last few updates have been a bit..bleak which is not intentional. But after ten at night, I tend to feel overwhelmed with all that is facing us, and that is when I generally have time to update, so that is what you here.

So, for tonight, here are some of the positive things you may not have heard...

The visit with the orthopedic today went well. The bones are fusing; progress is being made. When we return for surgery in early November, they may choose to allow Will to sleep without the brace and wear it only for activity. So we have hope that it may get easier.

Will and I did catch the stomach virus working its way through the family, but Will avoided the ER. It was close...I had my shoes on and was packing the bag when he begged me to not go. His bp was holding, but not his heart rate, so I gave him 30 minutes. He held his own, so I let him sleep and today he awakened vastly improved. Not spending the night in the ER is a huge blessing.

The hotel we are in is perfectly located for the situation in which we found ourselves. It is north of the city (the hospital is about half an hour away), but any shop or restaurant (including Jersey Mike's, one of Will's favorites!) is literally around the corner. We have a kitchen, so we were able to survive being ill and we didn't have to get in the car to find food. One quick trip through Walmart was all that we needed. We saved money AND survived the stomach virus. :)

Someone recently asked how finances were, especially since the kids were in school. Sometimes it is easy for me to focus on that bottom line and have no idea how we are going to do all of this. But, at the same time, I recognize that by all rights, we should be in foreclosure. The amount of money that has been required to handle all of the travel, the school expenses, and the medical bills is such that we should have already lost our house. But we have not missed a payment. We may pay it on the last possible day without it being late, but we have not been late with a payment. The Lord has totally provided everything we have needed each step of the way. This trip, I had no clue how we were going to do this. But the hotel points we have earned totally paid for the hotel (the hotel that has a kitchen!), and a church here in Ohio actually helped cover the rest of the expenses.

Let's not forget Angel Flight. We have not had to make the drive to Ohio since the infamous trip in May when we toured the hospitals between Cincinnati and home. Angel Flight has been a HUGE blessing. I truly have no idea how we would have managed this if we had had to drive Will each time.

We have friends here in Ohio who are determined to let us know that we are not alone. Every time we are in Cincinnati, we are invited for lunch, dinner, or even a cup of coffee and reminded that, while we may be far from home, we have a home away from home. We never feel alone. To feel so welcome in a distant city and to know that you can call someone if you have a crisis is a gift beyond measure.

Guest services at CCHMC is amazing. We walked in today and Kim came from around her desk and gave us a hug because she remembers us. We asked for information on the Freedom Museum, and she gave us tickets. I expected them to be discount tickets, but alas, no. We can visit this museum for no cost. I have had William read Uncle Tom's Cabin just so we could visit this museum and he would grasp the importance of it. But to visit it for free when our budget is so tight is a HUGE gift. And to be welcomed back to the hospital, while it may seem odd, is also a huge gift.

So yes, I do occasionally want to stomp my foot and yell, "Seriously?!", but I recognize that we are indeed blessed beyond meausre. Yeah, I sometimes want to ask to be let off of this hurtling train, but at the same time, it is amazing to stand by and watch the Lord work out all of the details that seem insurmountable to me.

So thanks for bearing with my bleakness, and thanks for sharing in the joy we have had in this journey.

Monday, October 11, 2010


How do I even explain the last few days? The grandkids spent the weekend with us which meant a late Friday night drive to Richmond to get them. We celebrated Chris's 16th birthday on Sunday. The washing machine had been down, so I was also trying to catch up on laundry so I could pack. Caroline came down with a stomach virus as Chris's party was starting. Cam followed later that evening. Billy isolated them and himself in an effort to protect everyone else. We discussed whether we should cancel the Ohio trip, but seeing the allergist before the surgery was the best choice, so we moved forward.

We decided that moving forward with the appointments was the best choice, so today, Will and I flew to Cincinnati. But as we arrived, I realized I had the virus. Tonight, William is ill. We are safely ensconsed in a hotel room with a kitchen, soup, crackers, ginger, ginger ale, and water. Will is so far holding his own. I am in a holding pattern, trying to determine if I need to start an IV now to prevent him from becoming hypotensive or do I wait and see how he does? Oh, this is so not fun.

All of that being said, we are so far coping. We are north of the city this time, staying at a hotel using points earned at another hotel. :) We are really convenient to a SuperTarget and Costco which is incredibly helpful given the current situation. Having a kitchen makes this so much easier. Progresso soup, a microwave, crackers, bananas, and popsicles means we can simply rest and try to recover instead of having to find food that would be safe to eat tonight. Lord willing, we will feel better tomorrow in time for the doctor's appointment.

Despite the incredible difficulty involved in getting here (again!),we have been so blessed. We were blessed with sufficient funds to cover the trip, angel flights, a hotel with a kitchen that has a grocery store literally around the corner, a rental car that doesn't make me cough, friends at home who pray for us and help us through the daily travails of our current situation, and friends here in Cincinnati who are willing to befriend people they don't know and walk a difficult path with them.

So while I occasionally want to stomp my foot and scream, "Seriously???" I am reminded that while we are indeed placed on this incredibly difficult path, we trust that Christ does indeed walk this with us and, even, carries us and all of this.

Saturday, October 2, 2010

Just the facts, ma'am

I keep thinking that I will have the time and emotional strength (at the same time) to get a decent update out, but that just hasn't happened. So here is the basic information so you guys know and can pray.

Will and I fly to Cincinnati October 11 for five days. We see the orthopedic on the 12th and the allergist on the 13th. We are doing a preliminary exam with the allergist just to rule out the whole EE issue. At least we hope to rule it out.

We will return home for two weeks, then Will and I will return Nov 2 for the Nov 3rd appointments wtih the orthodontist and plastic surgeon regarding the surgery on the ninth. We will remain in Ohio until the surgery. Travel is a challenge for William, and two trips in the same week may be too much for him. We really would hate to postpone the surgery due to a metabolic crisis, so we will just have to stay there.

Obviously with this much travel and the school tuition, finances are snug. Am I concerned? Yes. Do I trust that this is going to work out miraculously? Yes. It has happened before and I know that God is bigger than my budget. Am I worried about how William will handle the information regarding the surgery? Yes. I absolutely dread talking with him about it.

So, as I head to bed with a very heavy heart, I am grateful for the knowledge that God loves Will more than I do and He started us on this path and has promised to be with us...Prayers deeply appreciated.