Wednesday, August 12, 2015

A Dream Fulfilled

We are sitting in our room in the Marriott Marquis hotel in New York having just come from seeing Les Miserables. This is Haley's absolute favorite Broadway musical. The starring role was played by her favorite singer, Ramin Karimloo. In February, I wrote him a letter explaining that Haley was really sick and that she played his music over and over and that it brought her great comfort. He responded with an autographed photo, which thrilled her.

She actually bought the tickets for herself and I as a graduation gift for me. She wanted so badly to meet Ramin. My sister knows someone in the show and contacted her to see if she could arrange for Ramin to meet Haley. As we were standing at the stage door, I read an email that my sister had forwarded to me from the lady apologizing and saying that she had to dash out right after the show to go to an audition. Haley was disappointed but we waited anyway.

Eventually, the door opened and there he was. I called out his name (much to Haley's horror) and he came over to her. He spoke with her for a few minutes as she explained how much his singing had meant to her these many months. He looked directly at her and thanked her for her kind words. He asked about her surgeries and said that he would pray for her!! What a thrill for Haley and what a classy man Mr. Karimloo is! Haley just said to me, "I can die now!"

As a mom it has been so hard to watch Haley miss out on so many things in her life. What a blessing to see her have a dream fulfilled. I must say that I was not entirely looking forward to this trip, as I wasn't sure how we were going to get her around in a wheelchair. We usually stay with family in New Jersey and take a train in to NYC but that was not going to be easy in her present condition. Then last week we got a call from some very generous relatives who offered to put us up in a hotel that is literally yards from the theater. What a blessing. And then for her to have a few moments with this singer and for him to autograph her program was just wonderful. We have been counting the blessings that come her way this whole trip. In fact, Haley keeps jokingly saying "hashtag blessed" to me whenever we spot one, and there have been many. She has not waited in any lines. They waved her up to the head of the bathroom line in front of 25 people during intermission (hashtag wheelchair perks?). I asked folks to pray that she wouldn't faint during the show and she didn't! (Except for once after her bathroom break). Blessings are all around us and they point is to the God of all blessings. We are headed to Carmine's for dinner with some of our family from New Jersey (another yummy blessing!) I will post pictures later when I am not on my phone. We are so grateful for you all!! Today is such a good day!!

Sunday, August 2, 2015

Good-bye Pain Meds, Hello Seizures

I have been meaning to post an update for some time, but haven't done so until now. Haley has been on pain meds for a long, long time due to her chronic illness and the pain that goes with it. She has wanted to get off of them and has worked very hard at weaning down at different times. She nearly got off of them last fall (which one doctor told her was a huge feat that few people were able to accomplish), when she began fainting again, so the doctor told her to stop the weaning. The thought was that her body was not handling the change, even though it was gradual.

Anyway, a few months ago she got it in her head that she was going off the pain meds no matter what. She took herself down pretty quickly. (She's quite determined!) One night at the beginning of July, when she was nearly off of the meds, she fainted on the kitchen floor. When she woke up, she said that her muscles weren't working. I could see that they were quivering. I tried to reassure her and to help her to a sitting position, but it was like she couldn't hold herself up. I called the doctor, and he told me to give her some of her pain meds. (It had been a long time since her last dose.) I hung up the phone and turned to see her having a seizure. She had never had one before. I called the doctor back and he said to call 911. She was taken to the hospital and was admitted. Apparently her body was rebelling against the lack of pain meds.

She stayed in the hospital for a few days and was really ill with a lot of GI issues that go along with stopping narcotics. We are all so proud of her, as it was not an easy thing to do. After she got out of the hospital, she was scheduled for an EEG, which measures brain activity. During the test, she passed out several times. The report showed that there was some seizure activity in her brain during these times.

She has continued to faint multiple times a day and has had seizures daily, although they are seeming to lessen. Dr. Henderson was contacted and recommended a medication. She was put on that, and it seems to have decreased the seizures. In fact, yesterday was the first day that she has not had any seizures!! Dr. Henderson suspects that she has instability in the bones in her neck, and that is likely the cause for the fainting. We hope that he will see her soon.

About a week ago, she began having abdominal pain. It got worse and last Sunday, and when she was doubled over, I realized that she had a problem with her stomach. I dug around in the medicine cabinet and found a medicine that she had been on a while back that is to coat the stomach. I gave her some and it worked like a charm. On Monday we notified her doctor, and he wanted to see her and get some lab work. (It seemed that she had developed some irritation or maybe even an ulcer from the Ibuprofen and Naproxen she was taking for her head and neck pain since stopping the narcotics.) She dealt with this pain all week, ending up in the ER twice. The cycle of vomiting, dehydration, and pain was ongoing. The ER trips provided her with IV fluids and nausea medicine, along with a strong acid-reducing med that helped tremendously. The ER physician, who was somewhat familiar with her case (most of the docs there have treated her at one time or another), told her that he was so proud of her. He said that it was a great thing that she had done and that it might take months for her body to adapt to being off of the narcotics. He was really kind to her and you could tell that he respected her for her strength and determination.

So even though she has made great progress in this one area, she is still very "fainty". In fact, she has been told by several doctors that she is not allowed to go upstairs at all. This is because she had a faint/fall-down-the-stairs episode a few weeks ago. As you can imagine this is really discouraging to her. She now resides on the couch in the living room and has to be escorted to the bathroom. We aren't sure why this has happened or how long it will last, but we covet your prayers for her. It's really hard to live day-by-day, trusting that God has control of everything. With most illnesses, there is a predictable pattern; you get sick then you get better. Not so with this stupid illness. She can be walking around and doing relatively well and the BAM, back to fainting.

I am really grateful for her friends who have rallied around her. The other day, she was having severe belly pain, and in a flash, a group of friends were at the house praying for her, reading Scripture passages and comforting her in any way possible. One of them even accompanied us to the ER.

I have a specific prayer request, and it may seem silly, but here goes: Haley got tickets for the two of us to see a Broadway musical (Les Mis) as a graduation present for me. It is starring one of her favorite singers and they are front-row seats. The performance is Wednesday, the 12th and we are supposed to drive up and stay a couple of nights. It looks like she will be in a wheelchair, which makes things more complicated, but she really wants to go, plus these were very expensive tickets. Would you pray that she will be able to make the trip and that for just a few hours she will forget her physical struggles? She even wants to go to the stage door and meet this gentleman and hopefully get his autograph or shake his hand. Thankfully, Larry will be taking us, or I wouldn't be able to manage the trip by myself.

Thank you all so much for your care and concern. We are often holding on by a thread and knowing so many care is really a wonderful thing.

Saturday, April 25, 2015

A Stunned Dr. H

Yesterday we traveled to Maryland for Haley's post op appointment. As usual, the trip was long and the beltway a mess (what did I expect on a Friday afternoon?). Our dear friend, Kendra, came along to keep us company. Haley looked great. She had had a haircut and some highlights a few days earlier, so she was all spiffed up. Also, she had make-up on and a cute long skirt.

Anyway, we walked in to his office, and were met by his NP, Jean. Her mouth gaped open and she said, "Haley, is that you?" She's kind of new to his practice, so she's only ever seen Haley really sick. She gave her a big hug and told her how great she looked.

Soon we were called in to a room to wait for Dr. H. When he finally came in, he had the most shocked look on his face. He looked like he wasn't sure who he was actually seeing. Then he broke out in a big grin. Over and over he told Haley how great she looked. Then he asked her about her symptoms, and she answered each question by telling him that everything was better. "Headaches?" "Better." "Leg pain?" "Better."  "Back pain?" "Only incisional." Again, he looked stunned. He said that he wished that the nurses at the hospital could see her now. He even suggested that some day when we are in the area that we stop by and walk down the hall of one of the floors to let them see her!

The night before the appointment, we had decided to make him a cheesecake. A baker, I'm not, so we called Kevin's wife, Hailee, who is a fabulous baker. She offered to come over to our house to help us. Needless to say, we were grateful, as it had been a long day at work for her and we really did not know what we were doing. We whipped up an Irish Cream cheesecake with Dark Chocolate Ganache. It turned out perfectly!! I packed it on ice for the trip and we presented it to Dr. H. He was floored and very grateful. I warned him not to drive after eating a piece of it! (Ha Ha)

Here it is. Believe me, it looked (and smelled) even better in person!

Also, Haley had written a very heartfelt thank you card, which she gave him along with two books that she picked out especially for him. Both books have been a tremendous support and comfort to her during the years of illness. One is called, "The Red Sea Rules" and the other is the autobiography of Joni Earickson Tada, who was paralyzed as a teenager. She told him that she hopes they will inspire him as well.

It's kind of strange to say goodbye to Dr. H. I told him that we are so thankful for the way he uses his gifts to help people with EDS. As I am due to graduate in less than two weeks, I can only imagine how rewarding it must be to help sick people as he has. Of course, I will probably never help anyone to the magnitude that he has. but, still, I can imagine. He gave us big hugs, and we all posed for a picture. We all thought that his eyes were a little misty. Here he is with Haley.
Doesn't she look great? Of course, she still struggles with having very little endurance, and needs to rest a lot. If she gets too tired, she shakes and has a lot of pain (darn it!). He also thought that she should take an antibiotic for her incisions, which are a little angry.  Our prayer is that she will continue to improve. Our family has been through quite an ordeal for a very long time, but God has always been walking with us through it. That cannot be denied. 

As we were leaving, he gave me one last hug and said, "Thanks for being such a great mother." That made me smile!! I hope that after he was done seeing patients, he had a cup of tea (I just imagine that he is a tea drinker) and a big piece of cheesecake, read Haley's card, and said a prayer of gratitude for the lives he has touched and changed. I may write him a long letter explaining how he has been used in Haley's life.

Friday, April 17, 2015

Oh Happy Day!!!

The last 24 hours have been amazing. Yesterday at around 2 pm, Haley was so bad that I actually texted Larry and told him that I needed him to come, that I couldn't do this alone. He called me a few hours later and by then things had calmed down, so it was decided that he would wait until this evening to come. (He was really trying not to miss work!)

Then I heard from my oldest daughter, Paige, who was taking one last mini-vacation with her husband and their 7 year old before their new baby comes in a couple of weeks. They were heading to the Washington, DC area and to the Baltimore Aquarium. I asked her what town they were staying in last night, and she said, "Greenbelt." That's exactly where I am! I asked her what hotel they were going to, and she said the Marriott Courtyard. That's right next to my hotel! So last evening, I popped over to the pool at their hotel and surprised Reagan. It was so nice to see them, and I asked Reagan if she wanted to spend the night with me in my hotel room. She said yes, so I had company for the night.

Then in the morning, we all met in the parking lot and went to the hospital to surprise "Aunt Haley". Reagan brought her some pink tulips. When we got there Haley was sitting in a chair!!! She looked so good. She was stunned to see Paige and Peter, and especially Reagan. Reags through her arms around Haley's neck and hugged her tight. It's really the best medicine. You have to understand that in Reagan's world, there is no one as wonderful as her Aunt Haley. She prays for her fervently, and loves her so much. It's really quite something. I wish I had a picture of that moment. But here are Paige, Peter and Reagan before we left for the hospital.

Dr. Henderson had already been in to see Haley when we had gotten there, and apparently he absolutely gushed over how proud he is of her. When he got her up to walk her, she went 100 yards. He couldn't believe that she pushed herself after 4 days flat on her back. He insisted on taking a photo of her with his own phone and texted it to Haley. I was sorry that we missed seeing him. I know that Dr. H is fond of all of his patients, but I believe that he has a special bond with Haley. After all she's been through, she still fights. And he says that she is very bright and very tough. He's right. When he saw that we were in her room, he came back in to brag on her to me. Haley introduced her sister, brother-in-law and niece to him. He was quite taken with Reagan (and loved her name!) We snapped a picture of the two of them.

Here's the picture Dr. H took of Haley walking in the hall with the PT and dear Sudha the nurse (hiding her face).
She was discharged from the hospital at around 12:30, but Dr. H wanted us to stay in town one night in case anything goes wrong and we need him. We dropped our stuff off at the hotel and Haley asked if we could go to Target to get a few things. She said she would be okay if she could ride the motorized cart. Here she is:

She picked out some spring clothes and a new purse (she's addicted to purses) and a book and some nail polish. She was so happy to be doing "normal things." At one point, I told her to hold a shirt up against her to see if it was the right size. She held it with her chin and her eyes got wide. She said, "Mom, I don't feel pain down my back when I pull my chin down to my chest. This is the first time in my life that I don't have pain when I do that!" Also, she remarked that her legs don't hurt anymore. She said that for as long as she can remember, her legs have hurt her. She has always called them "leg migraines" and they are so painful. She said to me this afternoon, "You mean I won't have leg migraines anymore?" We are rejoicing at the results of this surgery. After target, we returned to the hotel where she put her loot on the bed. Here she is:

I love seeing her so happy. She must've thanked me ten times for taking her to Target. She said she feels normal, and that's so nice. 

I know that EDS is a lifelong disease and that there's no cure for it, so I don't usually get too optimistic, but I have such a feeling that Haley has good things in her future. Maybe it's because Dr. H keeps telling me that she's going to change the world. Anyway, my heart is full of God, and to you, our friends and family who have loved us so well. And I'm really thankful for Dr. Fraser Henderson. 

As I was sitting in the van in front of the hospital waiting for them to wheel Haley out, I saw Dr. H  coming out the front door. He walked around to the driver's window, and I rolled it down. He said, "Take care of yourself. You know see's really a remarkable girl." I smiled at him and said, "You know, you're pretty remarkable yourself." He smiled and walked away. I said, "See you next week" (her post-op appointment is next Friday). I sat there feeling so thankful that God had brought that man into our lives. He has truly changed the course of Haley's life. And he knows where his skill comes from. And he, too, is thankful.

Thursday, April 16, 2015

Quick Update

Just thought I would put out a quick update on Haley's progress. I know that so many are praying and concerned, so I figured folks might want to know what's going on. Today was a really hard day for Haley. Her pain was worse than it has been since the surgery. She went in to this surgery thinking that it would be pretty easy, and it's been really tough. The nurses told us that some people have a hard time with this surgery and some do really well with it. I guess we know which camp Haley fell into.

The other factor is that she really had two surgeries (Dr. H reminded her of that last night). Also, she was not "optimized" for surgery, as she had recently had meningitis and probably encephalitis, with fevers for days. The meds she was getting for those ailments had taxed her kidneys, temporarily, which is just another stress on the body.

Dr. H came in tonight and held her hand and told her that he would like to get her up tomorrow and see how she does. He is not one bit concerned about her progress thus far, and is making sure they keep her as comfortable as possible. I really doubt that she will be discharged tomorrow. We will have to take it one day at a time.

Larry is planning on driving up tomorrow after work, and we are both looking forward to seeing him. I hate the helpless feeling of not being able to do much for her when she is in so much pain. A small thing such as turning over in bed causes her a great deal of pain and she has to inch herself along until she is in a comfortable position, then I help her replace the pillows between her knees and behind her back. It's really so pitiful.

So there you have it. Please continue to pray for God's mercy and for quick healing. It's great to be up here where they all know so much about her disease, yet we both really want to go home. Thanks, as always, for your concern. I read all of your comments to her, and it means so much to both of us.

Tuesday, April 14, 2015

Surgery Went Well: An Update

Today was a long day! We woke up at 4:00 am and left home at 5:15. It was rainy and dark and there were a ton of tractor trailers on the highway, which spit mist up on our windshield. Haley was nervous and kept praying that we would be safe. It took us three hours to get to the hospital, but we made it safely.

Haley was gotten ready for surgery and taken to radiology for PICC line placement. We saw several nurses and other staff members who remembered us. It's weird that we have been here so often that they remember us! Her surgery was supposed to be at 11:00 but it was soon obvious that it would be delayed. Being a preop nurse, I understand that that's just the nature of surgery. You never really know how long an operation will take. So it's good to be patient. (Maybe that's why we call them "patients"??  ha ha)  Anyway, I digress.  Finally Dr. H came in to see her. He looked at her back and poked around a little, saying where he would put the incision. He said a prayer with Haley, and she tagged her own addendum onto his prayer, thanking God for Dr. H and asking Him to guide Dr. H's hand. I think he is truly touched by Haley's prayers. Then the anesthesiologist came in and looked through her chart, asking her questions. At last, Dan, the nurse anesthetist came in. He has always taken care of Haley, and he does a wonderful job. She never throws up after surgery when Dan is on the case. Haley looked at him and said, "Give me the usual, Dan."  He cracked up.  Haley then said, "I hear Carol out there" and sure enough, the OR nurse, Carol, came in. Needless to say, we felt comfortable with the folks taking care of her.

Her surgery took over 3.5 hours. But I was delighted to see a friend from years ago, Lisa, come into the preop area. It was nice to have her with me, and we dashed out to the hotel so I could check in and unload my luggage. We chatted and caught up, and then she had to leave. (She lives in the area and was so sweet to come and see us.) When I got back to the hospital waiting room, there sat Ally, one of Haley's dearest and best friends. She, too, lives somewhat nearby, and also took the time to come and be with me and to see Haley after surgery. That is some of the best medicine for Haley!

A little while later, I saw a wet (still raining) Gary coming toward us in the waiting room. He is the sweet friend of our family from our church, and a dear, faithful friend to Haley through years and years of illness. I gave him a hug and asked what he was doing there. He said that he was in the area for work so he thought he would stop by. (I saw through that--he owns the company, so he can go and check on whatever work is being done whenever and wherever he wants!)  Anyway, what a treat to have two of Haley's favorite people to wait with me.

Dr. H came out of the OR at 5:00 pm and said that the surgery went well. He untethered her cord, and it retracted up, meaning that it was truly tethered. This is a good sign. Then, he fixed the darned shunt, and he said that the rubber on the valve had disintegrated. He has never seen this before, except for the last time he saw it in Haley! What the heck? I asked him later if he thought the valves were defective. He said that that was a good question, and that he isn't sure, but that he definitely thinks that the way they are made is a poor design. Anyway, he fixed the thing and sewed the tissue in her back that had formed into a pocket so that it would heal well.

Haley was in recovery for 3 hours. We got to see her for short periods, as they were trying to control her pain. She said that her headache was much, much better, but that her back was really sore. They finally moved her to a room at around 8 pm. We were allowed to see her for a while in her room. At one point, Gary had her smiling and I snapped a picture.

Gary and Ally left shortly after this, as they both had long trips to their respective homes. I stayed for a bit longer, and stepped out to get Haley a drink from the vending machine. When I got back, I saw Dr. H sitting in the chair holding her hand and talking to her. 

He was so kind and said that Haley is so smart and so strong. He said that he thinks she is going to get over this hurdle and do great things in this world. He is really quite compassionate. He genuinely feels badly for all that Haley has had to endure. I could not believe that he was still at the hospital. His first case was at 7:30 this morning and he had just finished in the OR. What kind of dedication is this? It really blessed me (and Haley.)

So thank you for your prayers. God heard and answered: I was not alone, I'm safely tucked in at the hotel and am fine, and most importantly, God brought Haley through yet another surgery. I don't take one minute of this for granted. Would you please pray for her recovery? She has to lie flat on her back for three days, which will be hard for her. She doesn't ever watch TV, only YouTube videos of Broadway singers, so it may be kind of boring for her. Pray that she can endure the pain and the boredom and that I will be helpful to her. Thanks so much. We are in awe of the support you have shown. And we are humbled. 

Sunday, April 12, 2015

Surgery, Here We Come...!

Well, we are two days away from Haley's surgery. I wish I could say that she is excited and feeling strong, but both would be lies. She has continued to feel poorly since her meningitis, and is really pretty weak. Her incision is still puffier than ever, so I called Dr. H's office on Monday to let them know. I was a bit pushy (hard to believe, I know!), but I told them that I really felt he should see it. They reluctantly made an appointment for Wednesday at 5:00 pm, the end of his day.

I went to practicum in the morning, and left at noon to pick Haley up. We left at around 1 and got to Dr. H's at 4 pm . I figured, an hour is not that long to wait. Haley was feeling really poorly and immediately found a place on the floor, used my coat as a pillow, and covered up with the purple fuzzy blanket she'd brought from home. I played solitaire on my phone and tried not to eavesdrop on the conversation that two other women in the room were having. Eventually, they asked me about Haley, and after speaking with them for a while, I realized that the people who suffer from EDS have many of the same difficulties. Both of these ladies were older than Haley, both were moms, and both had had several surgeries with Dr. H. They felt so bad for Haley having to endure all of this at such a young age. I couldn't disagree with them. Here she is asleep on the floor of the waiting room:

After they were both called back to see the doctor, it was finally Haley's turn. It was shortly after 7 pm and I was both tired and hungry. Haley was tired and in pain, but hasn't been very hungry lately. Dr. H took one look at the incision and said, "Oh dear," in a way that made me realize that my pushiness was warranted. He told us that the shunt is leaking from around the tubing. most likely, and that he could either fix it the next day in the outpatient surgical center or do it when he untethers her cord on the 14th. He gave her the choice, but the next moment he made the decision for her--he would rather do it all at once on the 14th.

We left at 8 pm and stopped to get Haley a bowl of soup (she was finally hungry). We drove home, contemplating the next 5 days and thinking about the surgery. This was a long day, but well worth it. I had told Dr. H that I was happy to drive 5 hours (2.5 each way) for a 5 minute appointment. I think he thought I was being sarcastic, but I meant it. He knows so much about this condition, and we trust him implicitly. (He did spend a lot more than 5 minutes with her, which was nice!)

Larry and I made the decision for me to go with Haley on the 14th alone. His school has graciously allowed him to accompany me for all of Haley's medical appointments, but it causes some difficulty for his students. Even though there is a substitute teacher, they are often confused and in need of more instruction. For this reason, I will go and he will stay.

So the plan is to leave on Tuesday early in the morning to arrive at the hospital at 9:30. She will have a PICC line placed and then will be gotten ready for surgery. It is scheduled for 1:00 pm. I don't know how long she will be in the OR, but I suspect several hours. Obviously, we covet your prayers for a successful surgery. A friend prayed with me this morning and prayed that it would be "his best day." I liked that. Also, I don't like waiting while she's in surgery and usually squirm, read, play solitaire and talk to Larry. It will be difficult to be alone. Please pray that the time passes quickly for me. And I will be staying in a hotel, which is not my favorite thing to do alone. I would appreciate prayers for safety and good sleep. Can you tell I'm anxious?? I think she will be in the hospital for several days.

Finally, I have something a bit awkward to address. Several folks have noticed and made use of the "Donate" button on this site. Up until now we have been able to manage most of the expenses this round, thanks to some money that I was left after my mom died. With me working only 2 days a month (due to finishing school), I have had teeny tiny paychecks. The funds that have been donated are such a blessing. They go into a separate account and will be used for her medical expenses alone. I have not ever mentioned that button, and it was put there, I guess, by the person who set up this blog for me. (She, too, is a Dr. H patient, and has been through as much or more than Haley, so she knew that resources would be an issue.) Anyway, we are grateful for the donations. I am so behind in writing thank you notes, that I don't know if I will ever catch up. Our personal belief is that God will provide for all of our needs, and He has done that over and over through the years. Our own beloved church has helped us in so many ways, including financially, and we are grateful. Thank you for your prayers, your gifts, your meals, and your love for us.