I know it’s been a while but here’s an update on what’s been going on this last month.
Sometimes things get posted On Facebook and we forget to post them on the website for people who are not on Facebook. So here are a few things that have been posted on Facebook in the last couple of weeks.
The first is a video from the hospital, Tuesday may 16th, explaining what had happened and where we were at at that point. Check it out.
If you subscribe to my YouTube page you’ll get updates when we post videos.
I was going to do a separate post about the artwork I did on the windows but for now here’s a couple pictures and a small description. The reasons behind each of the drawings I will hopefully get to posting on soon.
This is what I left on the windows of my hospital room. Who knows how long they’ll stay before someone cleans the window but hopefully they will bless a few patients that will stay in this room. I will probably write a post on what the two paintings mean to me but for now I just wanted to share my art. I’m still learning how to write in the “new style calligraphy” and it was incredibly hard to do with window paint. The first one says “Today I choose Joy” the second one says “Love conquers Fear.” Hope you enjoy.
Here is one more post from Facebook, this one was actually this morning, so I think we’re up-to-date now.
Just hanging out on the couch, getting my antibiotics infused, dreaming about traveling again someday, watching a little Rick Steves. #piccline #travelbug #itsgonnabeawhile #setbackssuck #somethingtoworktowards #travelgoals #traveldreams #oneleggedwoman
Soon we will be doing a video with more updates on what’s going on. It’s a busy time right now for us. Along with me recovering from being in the hospital we are in the middle of moving. We will be moving to a new place to live at the end of the month. We knew this was happening all along, that we could only stay in our house until the end of May. We did think thing that’s were going to have an a little differently. Will explain all in the post later. We miss everyone back home in Idaho. We are very thankful for all the support we have received from family and friends. We couldn’t make it through all this without you guys.
One last thing: we actually had plans to go home to Idaho this Sunday but unfortunately because of the setback of being in the hospital we had to cancel those plans. I am feeling very discouraged by not being able to see my nephews get a adopted officially, but we thank God for FaceTime and then we can be there virtually. 😁
We have had a ton of encouragement and a little discouragement these last few week, but we are thankful that we do not carry these burdens, and that we have a faith that gives us the strength to go through this. A faith that doesn’t promise every day to be easy, but that does promises He will not leave us to go through it alone.
Jay made us stew last night. He pre-cooked some of it at our house and then brought the rest to cook in the crockpot he bought for us. It cooked all day in the hospital room. It smelled so good in here. My grandma’s stew recipe is my favorite meal so it was amazing to get to have it in the hospital. Thank you Jay!
Jay has been here since Wednesday and he is leaving this afternoon. He has been a godsend. Doing errands for us, cleaning up our house, keeping me company so David can have a break, and I’m sure much more everyday. Family is so important to me. I’m so thankful that he was here.
I will update everyone soon with more details, but for now, I’m doing ok, pain is under control, may be able to go home from the hospital tomorrow or Wednesday. Thanks for everyone’s prayers and loving support.
Saturday started off with a lot of frustration and anger. The pain was manageable with medications, but still sitting between 7 and 10. It would settle down to about 7 until Angela moved. Then the pain would jump to 10. The teams were making their rounds, and Dr Spencer stopped by. She came in strictly to take care of Angela. She looked at the MRI and consulted with all the rest of the teams. She explained what they saw on the MRI.
There was an infection in the bone and a puss filled abscess in her stump. Because of the unknowns, Dr. Spencer said they would enter through the amputation scar and take care of it. The abscess could be filled with viscous fluid or filled with more of a liquid puss. Spencer wanted to actually cut open the leg so that all the puss and infection could be removed and flushed. Without opening up the wound, there would be no way to be able to drain the abscess with a syringe if the puss isn’t liquid.
Angela started off the day with an INR count of 3.2. It went up to 4.5 by about 9 am. Another IV was put into Angela’s arm so that she would have a faster IV to give her vitamin k. She was also given 5 units of fresh frozen plasma to help bring her INR down to 2. Once it reached 2, the doctor wanted to go ahead with the surgery. He was hoping for around noon. She finally reached 1.5 at about 1:00 pm. It was time to get her moved to pre-op.
Down in pre-op, we waited for everyone to get ready. Dr. Spencer explained what her plan was, and showed us where the incision and procedure would be, and what would happen. They planned on taking multiple cultures throughout the surgery in the hopes that they can find an aggressive antibiotic for the infection. The whole operation was only supposed to be a couple of hours at the most. I prayed and with Angela, and we held each other. The anesthesiologist administered the initial relaxer, and we said our goodbyes. They wheeled Angela toward the operating room around 2:45 pm on Saturday.
After waiting for the 4Runner for over a half hour and another almost 2 hour drive back to the house in Plymouth, I finally got back to the house at around 5:15 pm. I quickly packed up some clothes, toiletries, Angela’s Kindle, and my computer. I left the house at about 5:30 to get back to the hospital so I could be there when Angela woke up. Dr. Spencer called me at about 5:50 pm to let me know that she was finished. She tried to explain what they found in the stump. There were small syringe-like bone growths that irritated the tissue, especially the masses. Any pressure would have caused very intense pain. There were also clots that Dr. Spencer removed. This is all that Dr. Spencer tried to explain to me over the phone. It wasn’t until about 6:45 pm when I was allowed back to be with Angela, and she slept for another hour and a half.
When she started waking up, the pain was excruciating. Dr. Spencer warned me that it would probably be bad until at least Monday, possibly later. She said the pain could actually be worse than the pain that brought us into the ER in the first place. It took nearly an hour after Angela was awake to get a small handle on the pain. Angela moved back to her room on the 6th floor. It took a while to get on top of the pain again, and was finally able to around 9 or 10. We learned that Angela was given 2 units of blood during the surgery, and to be on the safe side, the doctors wanted to give her some more units tonight. They decided to give Angela another 4 units of blood, being spread over about 5 hours. Starting around 11 pm on Saturday, the transfusions won’t be done until close to 4 am on Sunday.
The floor physician has come by several times, tonight. He explained to the best of his ability what his understanding of what happened during the surgery was. His understanding was that, during the surgery, there were several pools of blood where they puss was thought to have been. He said that Angela lost some “old” blood, and that’s why she had the transfusion. Something he was hesitant to go into too much elaboration on was a potential course of action depending on the severity and response of the infection in the bone. One possibility, if antibiotics don’t completely remove the bone infection is an additional amputation. That would involve trimming the bone a little more to remove the infected portion. I’m praying that this never happens. That God clears the infection in the bone and tissue and the infection dies without doing anymore damage.
I’m praying that the morning orthopedic doctors fully explain what was discovered during the surgery, what risks there are, and what treatment options are available. I feel like this is a huge mountain that we just couldn’t find until yesterday, and now that we’ve found it, we are able to finally get past it and all this pain, these setbacks, and uncertainties.
Angela had the worst pain she’s ever experienced in her stump. Two calls to the orthopedic doctor and 7 hours later, we went to the emergency room. 7 hours and 3 medications later, the pain finally started to ease just a bit. Pain went from a 10 to a 7 or 8. Her stump was swollen and felt a little warm. She had a little fever, too.
Angela was admitted to the hospital, and they performed ultrasound on her stump to search for clots. Although there were no blood clots, there was a little bit of inflammation in the outer side of her stump. She was given antibiotics through her IV, and the pain, hematology, orthopedic, and vascular anomalies teams discussed what to do next.
An MRI was the next step, so they brought Angela to radiology/MRI around 6 pm Friday. Even with muscle relaxers and pain medicine, the position for the MRI was just too unbearable for my beautiful bride. Around 8:30 pm they took her back for an MRI under anesthesia. They finally brought me to send her in the recovery room around midnight. We were brought to a new, bigger room to stay.
The floor doctor came by a short time ago and explained the results of the MRI. There is an infection in the bone, and there is a large pocket of puss in the stump. One again, Angela can’t eat or drink anything because they are going to have to go in and clear out the puss. Whether it’s draining it with a syringe or through a more invasive surgery, they are going to remove the puss and clear up the infection.
It’s just before 2 am on Saturday, and I’m just 5 hours away from being awake for 48 hours. Praise God for all the strength, support, grace, and hope he has given me through all of this. Although there was nothing I could do to relieve the pain Angela experiences, sometimes even to the point of screaming in anguish because it is so unbearable and excruciating, and she feels like she’s dying, God gave me the strength and support to be Angela’s anchor. She can lean on me for hope and strength.
God has performed so many miracles since we decided to proceed with the amputation. So many of you are supporting us with prayer and financial help. The expenses are growing and the time we need to stay has grown, yet I know God will continue to provide. I don’t know how, but I believe he will provide a proper wheelchair, perfect prosthetic leg, and great rehab. I want to shout out how much the glory and praise goes to God. God is so good.
I love you guys!
Well once again it’s been a couple of weeks since I posted; however, only a few things have really happened. David had a birthday, I got the flu and we also went into the city for a doctors appointment and to the ER. Here are the details.
David’s Birthday and one trip to the city:
Last week was my wonderful husband’s birthday. He’s so wonderful that he spent the first part of his birthday at the doctors with me. We drove into Boston to go to the Vascular Anomalies Clinic (VAC) at Boston Children’s Hospital (BCH). We saw Dr. Spencer, my orthopedic surgeon, who we actually weren’t scheduled to see for a coupl
e of weeks, but she was there so she stopped in. She said everything looked great. The incision is almost healed, it only has about a 1/4″ left to heal. She said that we should be moving forward with physical therapy and getting my prosthetic, however we should be prepared for it to go slower than a normal amputee. Because of my condition it makes things inside heal much slower and I might experience more pain when using the prosthetic. We’ve been moving forward so quickly with everything it wasn’t exactly the best news we wanted to hear. We will be discussing things with our prosthetist on Wednesday.
The next doctor was Dr. Fishman; he is the head of the VAC and has been one of my doctors since I was 16. He removed a very large venous malformation from my abdomen. At the time it was the largest venous malformation surgically removed from someone, however, Dr. Fishman has informed me this is no longer the case. The reason for this doctors appointment was to talk to him and the team about the future. Would my doctors continue to see me as I get older and older, especially because it is a children’s hospital. They informed me that they would follow me my whole life, which was a good thing to hear.
After my appointment we started celebrating David’s birthday! We grabbed some lunch and headed back to Plymouth. It was a sunny day, so we walked up and down the pier, checking out some of the small shops along the street. We went back home and David opened his presents. Later that night we went to Texas Roadhouse for dinner. Unfortunately, we did not realize it was the first weekend the restaurant was opened, and the wait ended up being an hour and a half. The food was pretty good, and David enjoyed it so that’s all that mattered!
The flu and trip number two:
Sunday, only a couple days after our first trip to Boston, we made another trip to Children’s hospital. This time it was because I had spike a high fever (104) and we drove into the ER to make sure nothing was wrong. I didn’t really want to go, but several people suggested I go, including the on call Ortho doc. There was no redness or any drainage at the incision site. The ER doctor looked at me like I was crazy, and then told me I had the flu and to go home and rest and drink lots of fluids. Thankfully it only lasted four or five days, although I’m still not quite feeling as good as I was prior to the flu. Its tricky having a rare condition, sometimes all your symptoms could point to something really wrong, or it could just be the flu. Its hard to know when to make a big deal about it, and when to stay home. During the flu when my fever would spike I would get severely cold and start tensing up and shaking. The tensing up of the muscles in my stump, that are trying to recover still from the surgery, hurt them and even now a week later I’m still in pain and unable to do as much as I was doing before. Hopefully soon I’ll be back to “normal.”
Unfortunately, the flu set me back a week in the process of getting my prosthetic. Last Wednesday I was supposed to have another test socket fitting, but we had to reschedule it for this Wednesday. Its not the end of the world, but David and I are both very ready to be back home in Idaho.
We have some good news! At the end of the month we get to fly home to Boise to be a part of our nephews adoption ceremony. My brother and his wife are adopting two of their foster children and we have been blessed to be able to be a part of it. We will only be home for a couple of days but we are extremely excited to see family and friends.
That all for now! Tomorrow is David and I’s One Year Anniversary!!! Can’t believe it’s been a whole year. I’ll do a post later in the week about our anniversary and the appointment we have this week.
I realized that I’m not updating the blog as much as I am posting things on my Facebook (@theadventuresofaoneleggedwoman) and I have followers out there who don’t check facebook as often as some others, so I thought I’d update everyone. We’ve been doing more things, especially since the weather’s been a little nicer. I’ve also started physical therapy and today we were able to go to church. Here’s an update…
At the end of March my sister was able to come visit for part of her spring break. We made a few shopping trip together to spend some birthday money I received from family and friends, but mainly we hung out at home coloring and watching “Blue Bloods” (a TV show in CBS). On her last day here we drove from our home in Plymouth to the very tip of the cape, about a hour and a half drive. I had never been all the way to to end of the cape before and it was a nice day and a good drive.
Night at the Symphony (April 8th)
We were so blessed to get discounted Boston Pops tickets to celebrate David’s Birthday (a little early) and to do something fun in the city. When I was in college I took a class called “Going to the Symphony”. That semester I saw over 10 Boston Symphony Orchestra performances and it was one of my favorite classes and experiences when I was in college. It was so much fun to be able to share this experience with David and show him one Boston’s best things to do.
What made this even more special was that the Boston Pops were playing all pieces from the composer John Williams who wrote scores to movies like Indiana Jones, Star Wars, Jaws and much much more. During some of the performances they played clips of movies that coincided with the music they were playing as well as had actress Karen Allen from Indiana Jones: Raiders of the Lost Ark host the night. It was a joyful, fun, wonderful night.
On top of just being a fun night together we experienced a blessing and miracle from God. To some people it might not seem like a miraculous thing to find a parking spot but when you’re in a wheelchair or have trouble walking finding a close parking spot is a wonderful thing. The night before we went to the performance I was looking at a map trying to figure out where the best place to park was. The closest garage was about a four minute walk and there were a few spots on the street right by the entrance that we had to use to get into Symphony Hall. I had little hope that we would actually get a spot on the street because of how busy that area is especially during a night with a performance. But David had hope and he prayed that night that God would provide a spot on the street close to the entrance. The next evening when we drove down the street I pointed to the area where there could be street parking but said “we’re not going to get a spot” but as we pulled closer there it was, a spot open about 50 feet away from the entrance and 10 feet away from five guys where we are going to eat dinner. Right in the middle of where we need it to be, right where God knew we needed. Praise God for little miracles, actually I consider this a big miracle and if you live in Boston you probably do too.
April 10th was my first physical therapy appointment. The first one was a consult and evaluation to see where I’m at. Today (April 19) was my 4th appointment. I have been doing a lot of stretching and strengthening exercises. Mostly working on stretching my left hip flexor muscle and strengthening my core. We also do arm exercises and things to help with balance. Once I actually get my leg she will be teaching me to walk and use my leg properly. A couple of exciting thing have already happened at PT in the last two weeks.
First, the physical therapist gave me a test called the AMPnoPRO test, amputee mobility predictor with no prosthetic. The score of the test determines what prosthetic you are eligible for. I scored the highest ranking, which means I will be able to get a prosthetic that allows me to be very active. I’m so excited when I think about the future and the life that may be possible, the things I will be able to do, but at the same time it is going to take a lot of work to get to that point and honestly it’s a little scary.
Second exciting thing is that we found out that once I get my leg (probably around the end of May) I may be eligible to go to an inpatient rehab facility for two weeks in order to do a intensive training on my new leg. I guess you could call it a Boot Camp for Learning how to walk on your prosthetic. It would involve three hours a day of physical therapy and David and I would be staying the night at the facility similar to being in the hospital. The facility is on the Charles River in Boston and it is state of the art, with exercise equipment and a swimming pool that I could swim laps in. It’s both very exciting and a little bit scary. Three hours of rehab every a day seems exhausting, but I am looking forward to leaving there stronger and being able to walk better than I ever have before. I could come back to Idaho being a pro at using my prosthetic.
Please pray for the months ahead. For strength to do well in rehab and that I will be able to get into the program at the inpatient rehab center.
Just what the doctor ordered, a warm day bright sunny day. With hope of a record-breaking hot day in Boston we packed a lunch and some games and headed to Boston to have a picnic at the Commons. Boston Commons is a park in the middle of the city that on most sunny days is filled with people playing frisbee, having picnics, walking their dogs and having a good time. David had not yet been to the commons so once again it was fun to show him another part of the city that I spent time in before we were together.
I worried again that we would not build a find parking and David again had hoped that we would and yes we did find parking right on the street close to where we needed to enter the park. We actually decided to find a bench in the Public Garden side, across the street from Boston Commons. The sun was bright and hot that day and we found a bench and ate some lunch. Unfortunately, it was a little bit too hot for me, not sure if it’s my medication but my body doesn’t handle the heat as well as it used to. However, we made the most of it and walked around the garden and found a bench with a little bit of shade to sit and play a game. It was a record breaking heat that day, 85 degrees in April. Hopefully we can make another trip into the city once the flowers are really blooming and David can see the beautiful Boston spring.
One of our favorite things to do since I have been out of the hospital recovering is take a drive somewhere. Sometimes its a short drive to Walmart to get groceries, or around the area in Plymouth that we live, just to get out of the house. We like to see the various house around the area, some of them are quite big, but mostly just like to get some fresh air and a change of scenery than just sitting on the couch. Sometimes, especially if we don’t have an appointment that day, we go a little farther and explore some of the beautiful things to see here in Massachusetts.
Today (April 13th), we head down to the south of the Cape. We’d been to the tip of the cape with Jen, which is kind of a east and then north drive. On that drive you cross over the Sagamore bridge, one of the two bridge crossing over the Cape Cod Canal, and connects Cape Cod to the rest of the state. The other bridge is the Bourne Bridge, and today we set out to cross it and go from
there. Sometimes we have a destination in mind, sometimes we just drive, and other than our goal to cross the Bourne Bridge we just drove and see where it took us.
Our drive ended up taking us all the way to Falmouth. Falmouth is one of the busiest little to towns in Massachusetts in the summer. Woods Hole and Falmouth Inner Harbor are two ferry ports that take vacationers to Martha’s Vineyard in the summer. Close to the Wood’s Hole Terminal, on the south tip of the Cape, there is a light house called Nobska Light House. The light house was built in the late 1800s and the house next to it has housed a lighthouse keeper until 1972. It is under restoration now and hopes to be opened to the public once the work has finished. For now it is a beautiful place to visit and to take pictures of the lighthouse, grounds, and the amazing views of the coastal waters.
Last week (April 14-22) we lived in a hotel. Our home in Plymouth is usually rented out as a vacation rental. When I found it in December of last year, and arranged for David and I to live here until the end of May, the house was already rented for the week of spring break. We signed the lease knowing that we had to find somewhere else to live for this week. The church I attended when I lived in the Boston area prior to my move to Idaho gave us the gift of a week stay in a hotel in the area. The hotel was very nice, it was a one bedroom suite with a kitchenette and handicap accessible room and bathroom. We were so blessed to be able to stay there and it was closer to the church so we were able to go for Easter.
So that’s what’s been going on lately in my world. We are back in Plymouth now. Very grateful for a place to say for the last week, but very happy to be back in the house we have called “home” since January. God has done so many many miracles in the last 3 months, we are so grateful for his mercy, his protection, his love and goodness, his provisions and more. We are grateful for the love and support we have felt from friends and family from all over the world. I will try to write more often to let everyone know all that is going on during our time here and with my recovery from my amputation.
Today I got my leg casted. It is the first step in getting my prosthetic made. It is a very long process. We now wait 2 weeks for the socket to be made from the cast they made of my stump. Here is a video of the process. First they had me put on a mesh sock type thing to cover the stump. This allowed them to slide the cast off after it was dried. They they wrapped my stump in a wet fiberglass casting material. After the stump was fully covered she used her fingers to make indents in areas they need to mark. Pressure points where a lot of my weight would be carried.
After it was hardened she then pulled it off. And that was it.
After the casting was done we talked with the prosthetist about how long they thought realistically the process would take. Especially because we have our lease agreement till the end of May and need to make arrangements to stay longer if necessary. After talking with them, and then talking together, we have decided that we need to stay till the end of June. By then the leg should fit well and I will have had a little while to make adjustments if I need after I start using it.
Today was a really hard day. But also encouraging. We have the ok from doctor Spencer to start physical therapy, which will be hard, but I am looking forward to it.
We also have an appointment with the pain doctor tomorrow to possibly start weaning off some of the pain medication I have been on. Please pray for his mercy and grace on me. I don’t want to be addicted to any medicine but I also don’t want to be in pain. It has been a hard week and I’ve been more emotional and I’ve felt before that this doctor was not very sensitive. Please pray for a calm day tomorrow and that the sun will be out.
Here’s a short video update on our way to the doctors today. More to come later tonight after we have answers from the doctors.