Physical Therapy

We continue to be so grateful for the many prayers in Ricki's behalf as she has gone through her recent surgery and recovery. Today we celebrated because starting next week she only has physical therapy once a week! It is painful and challenging for Ricki and not something she has looked forward to. But,she has persevered and each week she is making small improvements. She has a great team working with her and she has even been brave enough to let them do acupuncture in an effort to find some pain relief! 

On the Mend

Ricki continues to be determined in her progress to get back on her feet.  She started Physical Therapy this past week and always amazes me. She works so hard in physical therapy stretching her back and scar areas and building her endurance. She is exhausted the next day but back at it the next. She has had a set back and has come down with a miserable cold this weekend. Even when she is miserable she seems to be able to pull off some smiles and laughs. Of, course having your best buddy watching movies with you on your IPad always helps too! 

HOME!

We were met at the airport by our sweet family. What a joy to be with each of them. Ricki was so excited to have them waiting for her she ditched her wheelchair driver that wanted her to wait until all the passengers were off the plane.  She just couldn't wait that long to see everyone. When we arrived home I don't know who was more excited Ricki or her dogs. Our family next door said they knew we were home because the dogs were making such a fuss. It was fun to see her snuggle up with them and drift off to sleep.  As we wrapped up the day I felt an overwhelming gratitude for the many angels....family, friends and neighbors that have lifted, cheered, loved and strengthened us through some challenging times these past 5 years....There really is no place like home,

Celebrating Ricki's Recovery

It was an amazing day today! It was fun to celebrate with the doctors Ricki's miraculous recovery! I found myself fighting back the tears several times during the appointments. It means so much to have NF2 doctors that care so much.  Dr. Belzburg kept reminding Ricki they were there for her....Dr. Blakeley kept reminding Ricki it was her job to worry about the NF2 stuff...and all Ricki was to worry about was getting better and her normal life stuff. Dr Yang was humble and just shrugged his shoulders and said it wasn't a big deal when we expressed our appreciation. We had a chance to visit our favorite places- the koi fish pond and the statue of Christ, in between Ricki's appointments. Johns Hopkins has been a place of healing for Ricki and we will be forever grateful.

Dr Belzburg NF2 Neurosurgeon 

Dr. Blakeley NF2 Neurologist

Dr. yang Thoracic surgeon

Ricki's Before (bottom) and After MRIs 

One of Ricki's favorite places the koi fish pond

Our favorite place of refuge and peace. 

Feeling Emotional

I am feeling emotional....our son Steven came to be with us a few days and was so sweet with Ricki. I am so blessed with such sweet kids. I know if they could all her siblings would have been here too. When Steven left today I just started crying and have had a hard time to stop. So many emotions in such a short few weeks. I am so humbled by the outpouring of love and support from family and friends. 

Today Ricki had a 2 hour MRI without any anesthesia and with her painful incision was such a trooper! They did let me stand next to the MRI machine to rub her feet..she held so still for the whole time...She just never ceases to amaze me.

Improving each day

Our hearts have been touched recently by the prayers, love, and many acts of service to Ricki. She has been cheered and strengthened just when she needed it most. Each sweet act has blessed her in a different way and given her determination to get through the challenges she faces. 

Each day Ricki is improving. We have been so blessed to have her brother Steven come out for a few days. We love his cheerful spirit and willingness to take us all over Baltimore. One of Ricki's doctors gave us tickets to the aquarium. It was definitely a highlight of the week. We love the dolphins and the archer fish that spit at the crickets on the stick. We tok several breaks but still wore Ricki out. She had several seizures last night so she slept most of today.  I was glad to see her doing better tonight.

Tomorrow she has an MRI then doctor appointments on Wednesday and then hopefully home on Thursday! It has been a miraculous journey and we are so thrilled at how well Ricki is doing. We have felt Gods hand in our lives and know he hears and answers our prayers. 

Pictures of the aquarium

Flowers from Recursion Pharmacuticals! We were watching Miss America when they came and it made her feel like Miss America. :) 

A sweet care package from a friend with a rare disorder that gets what Ricki is going through. 

Friends and family gathered to support Ricki

Reflections from the past week

This was Ricki's first time in an adult unit. All of her other surgeries have been at Primary Children's Hospital. At the children's hospital they treat the patients with a lot of tenderness and  honestly really dote on them and make sure they are not only physically but emotionally well. Here on an adult unit at Johns Hopkims it was a very formal environment. Everyone addressed Ricki as "Miss Jensen". They would rarely just chat and visit it was all business. After several days Ricki had a melt down and I discovered it was really bothering her to be in such a formal environment. So we brainstormed and csme up with some ideas. She put up a sign on her door that said "Please call me Ricki" and we decorated her door to help people feel hopefully more relaxed coming into her room. It worked like a charm and before we knew it the nurses and techs were smiling and being more friendly and less businesslike. We did speak with them and they are trained to be businesslike because it is an adult 

Another issue we found is that there was just not much to do to give Ricki distractions from her pain. We are grateful we new in advance we were going to be on the adult side so we had our own coloring books, some crafts and books to read. Before the surgery we ask the nurses where some calmomg places were and she suggested the choi fish pond and the Christus statue in the old hospital building. Ricki found those places to be very therapeutic.mshe was very disappointed to discover after the surgery she wasn't allowed to visit those places for quite a few days after surgery and it is definitely something she looked forward to. 

Over all it has been a sweet experience and our hearts are full of gratitude for all the love and support that have made this miracle for Ricki possible, 

Miracles

Today we have had a chance to relax. Ricki had fun ringing the "Good News" bell at the Ronald McDonald House. All the staff came out and celebrated with her that she was out of the hospital.

 Kindness knows no boundaries. One of our concerns for coming to Baltimore  was being so far away from family and friends, we know Heaven hears our hearts and knows our worries. We have felt so much love and support from the medical staff from others here at the house and even from random people we didn't know. 

Ricki had a tough day as far as getting up and around. When she walks much she gets sharp pains in her chest and gets light headed so she has spent most of her day relaxing. Each day I am sure wil be a better day. 

Out of the Hospital!

Ricki slept all day yesterday and by evening she was doing much better. I took her in the wheelchair to the pond to feed the choi fish and it was a relaxing evening. Even after sleeping all day - she slept all night.  This morning her vitals were the best they have been since we came. Ricki even made it through the night without any IV medicine. When the doctors came for the morning rounds they gave us the ok to be discharged from the hospital.it will be so nice to be out of the hospital and It is comforting we will have a home nurse to give us support in the coming week until we are given the clearance to go home.

While waiting for the shuttle bus to take us to the Ronald McDonald House Ricki was struggling. She was in pain and feeling week and just wanted to go home to her dogs and her own bed. We have never experienced getting discharged and not going home. The excitement wasn't the same. I tried to cheer her up but wasn't having much luck. We got up to leave and there had been a beautiful woman sitting by us that had kind of kept to herself. She stood up and handed Ricki a card. She told her it looked like she was having a rough day. Inside was a sweet note reminding her that God loved her and a scripture from the bible. It also contained a gift card. It brought tears to my eyes. I am so humbled by the little tender mercies that have lifted Ricki's spirits just when she needed it. 

A long night = Sleepy Day

Each day we are down a couple more IVs and pumps and this morning she is down to one IV in her arm! That is exciting but unfortunately that has come with with more pain. Ricki had a good morning Sunday but Sunday evening became crazy. Ricki was began twitching so we assumed it was from all the changes in meds she has made over the last couple of days. Soon she said she wasn't feeling well and wanted to move from the chair to the couch. Her legs went out on her then she began having a seizure.   It has been probably a year and a half since she has had any large seizues like this. Rick and I determined it was a non-epileptic seizure but thought  the nurse should be aware what was going on. It got kind of crazy because little did we know they had standard seizure protocols they had to follow. Ricki became non-responsive and we ended up with the light flashing and beeping outside Ricki's hospital room.  All the nurses surrounded and gathered to help. Needless to say it was kind of crazy. When Ricki woke up they were all gathered around her and that was pretty traumatizing in itself.  We were hoping for a calm night. Ricki was having a hard time to sleep and wanted a cup of ice water. I didn't see a nurse close by to ask and  we thought it might be nice just to walk down the hall for a glass of water. Sadly by the time we got to the ice water machine she was not feeling well so she sat down.  Then she could feel it coming on again and told me she needed to go down on the floor. Because she had been seen by all the doctors and they had been educated about Ricki's seizures they were more calm but they ended up wheeling Ricki's bed down the hall to her and taking her back to her room. She still could not sleep so I helped get her distracted with a drawing project. It was 3:30 a.m. And we knew X-ray would be coming soon at 4:00 so what is the point of going to sleep. The X-Ray came around 4:30 and the IV team came around 5 to put in a new IV because it got pulled out when she was having her seizure.  We got a litle sleep on but then the doctors start their rounds around 6:00-6:30. (Which is 4:00-a..m. Utah time) We had neuro surgery team, then the pain team, the neurology team and thoracic teams all come by.  Fortunately most of them just let her sleep.  She did get up have breakfast and try to go for a walk but she was not feeling well so we came back and she has been sleeping for several hours now.  It is hard to see her like this because she was doing so good. Hopefully this sleep is what he body needs and she will be able to bounce back to where she was. 

Ricki's full IV pole compared to today's  empty IV medicine pole 

No Pain No Gain

Saturday Ricki was excited to lose a couple more lines that were connected to her. Her medication pole that has become her constant companion is getting lighter and less awkward to pull around. The pain has increased and she has become more on edge.  However, her nurses have been very attentive in trying to keep her as comfortable as possible. Her heart still races when she gets up and moving but overall she continues to make great progress every day.she did 4 walking laps around the thoracic unit today.  Even though she is in more pain she is gaining more momentum for a full recovery. 

Day to Celebrate

We are celebrating today! Ricki keeps amazing us all. Today she went for a short walk out of her room. While we were gone to get some lunch Dr Yang's team came to remove her chest drain. She followed Dr Belzburgs advice and they gave her all the extra meds they could and had it removed before we got back. When we walked into the room she was all smiles! This has been amazing to see her healing so quickly. I think she has been living with the pain from these tumors for such a long time having them out is a huge relief. We continue to be humbled by the many prayers in her behalf and know God is listening. We are looking forward to more good days ahead.

A Peaceful Day

Ricki continues to make small improvements every day. Her pain and heart rate are under control.  They also took her off oxygen so we are minus one more attachment. She still looks forward to her breathing treatments.... They were going to take her chest drain out but it needs another day.  We were relieved..We are all exhausted and it is nice just to rest today and then hit some hard stuff again tomorrow :) 

It brings me to tears each day how sweet all of Ricki's doctors have been to her. We love Dr Belzburg, Ricki's NF2 Neurosurgeon. He stopped by today and told Ricki it was going to hurt when they took the chest drain out.  He told her if it were him he would need a bottle of Jack Daniels but since she couldn't have that she needed to make sure they gave her something for the pain before. He said if they came to take it out and hadn't given her anything to tell them to not come back until they had:) Ricki had fun joking around with him. 

Ricki has missed her dogs! It is so fun to see even the small little miracles in our life. We saw a therapy dog in the foyer this morning so we asked if she could visit. She said it very unlikely since it is such a big hospital but today it did. We were excited things fell into place and she got a special visit from Winnie. 

Today we are again grateful for many miracles in our lives  and look forward to more good days ahead! 

Better Days Ahead

I am sure Ricki will say one of her favorite parts of the day was her visit from Dr Blakeley. The visit this morning had a sweet calming effect on her. Ricki  was cute she said "Dr Blakeley told me just what I needed to hear" Dr Blakeley told her she was Wonder Woman and that she was 4 days ahead of her recovery than they had anticipated. She explained the pain Ricki is experiencing and what improvement she can anticipate over the coming week. It gave Ricki hope for better days ahead. 

They removed the arterial line in her arm, the central line in her neck, her catheter and  they shut off the suction to her chest drain.  Although she is still in a great deal of pain she is making progress towards recovery.

This is all of Ricki's pain management medicines in addition to the oral meds she is taking:) we counted and yesterday she had over 20 different things attached to her but now she has 4 less than yesterday but then added one more later today.. We are still headed in the right direction!

From Aching Heart to grateful Heart

After an hour and a half the gal from the front desk came and found us and told us we needed to go into the conference room because he wanted to speak with us. Our heart sank.. What was wrong? Then it sank even more when two of the surgeons came walking in. They didn't seem upset... Finally they said we are done! Dr Belzburg likes to joke so I know we looked at him funny unsure... We ask of he was really done? He assured us they were done. He proceeded to tell us that sometimes you get a miracle and things just go right. They were able to smoothly remove 3 tumors with ease. They were extremely happy with how well it was going. She still needed to be finished up but things were going well. Later the anesthesiologist came back and let us ow how well it went. I don't remember a time when the anesthesiologist came and updated us... Ricki has found a soft spot in each of their hearts.  Even the nurse came to find out how the surgery went. She was thrilled as well to know it had gone so well. 

We feel so blessed that our prayers re being heard and that the surgery went so well. The hardest part for Ricki will be the coming days. Please continue to keep her in your prayers. 

His Eye is on the Sparrow is the perfect theme for this surgery for Ricki.  There is no doubt she is being watched over and taken care of.

The aching heart of a Parent

Sending Ricki off for this surgery is the most difficult thing I have done. Yes, she has had quite a few surgeries -even her brain surgeries didn't feel this heavy....but maybe it is because of the previous surgeries that make me realize just how fragile life is and how much my little girl is going to have to fight.

The morning began I early at 4:45 a.m.  Starting with some imaging and then visits for all the different doctors involved in the surgery. At 6:30 they took her down to pre-op where we met with the anesthesiologist. As we were discussing the issues with her vocal chords I wanted to cry when they said she would probably lose some of her voice and have to have surgery to fix any damage they may do.. Because they are working with the lung they will need larger tubes down her throat which will likely affect her voice. I still pray that this will not be the case and that her voice will remain intact. Next they gave Ricki and epidural to help with her pain management after the surgery. Again, another prayer  that it is a good epidural. In having children I have had good epidural a that have been amazing and not so good epidural s that really aren't very helpful. After that was done they rolled her off to the operating room to continue her preparations for the surgery. 

There were tears shed... Bless our sweet daughters heart. She has been through so much I her lie... She handles it with such grace and faith in our Heavenly Father.  She was determined to have this surgery on hopes of feeling better and being able to begin beauty school in January. 

They called and said they had officially began the surgery at 9:15. As we sit and wait a church hymn came into my mind.  Fear Not I am with you oh be not afraid.  For I am thy God and will still give the aide. I'll strengthen thee help thee and cause the to stand. I am grateful for the comfort and strength from the Holy Ghost in times like this. 

Pre op pictures...

Successful Embolization!

We are back with Ricki. The procedure went much better this time! They were able to get some very good views of her arteries and also identify which ones are connected to her spinal cord. Those they will not embolize but the others they did. They also made precautions in preparing the ones in her ribs to try to decrease her chest pain. It boggles my mind the intricate details that are going into this surgery. She has to lie still for 2 hours and then we can go back to her room. She is still very sleepy but seems peaceful. I wonder if the challenges the past few days may have been a blessing.  I think they are understanding Ricki's pain a little better and will be better prepared for her surgery tomorrow. Thanks again for strengthening us though your prayers.

The Roller Coaster Ride has begun

Friday Ricki went in for the embolization procedure. They didn't put her totally out because it is more effective if she can take deep breaths when they are doing the imaging of the arteries. Unfortunately it became too painful for Ricki and they had to start and they were only able to start one artery.  She was in an extreme amount of pain which is unusual for this procedure and it really through them off. (This is not uncommon with Ricki) that night was a. Very rough night with a lot of nausea as well.  

By Saturday afternoon things had settled down but they still would only let Ricki have sips of water with her meds. She was stir crazy and hungry. In addition this is the first time she has been in an adult unit and it is pretty boring compared to Primary Children's Hospital. ... In fact you even have to pay $10 a day for the tv...we decided it was worth it to distract Ricki.. We all know Ricki's happy place is with Disney and the shows on the Disney Channel make her laugh. The final straw was after we had the TV we discovered here in the adult unit there is no Disney... So gratefully we have netflix and we found a tv series  to start watching. 

Sunday morning when the Drs did their rounds they determined that it was in Ricki's best interest to embolize the arteries so she is scheduled for another Monday morning procedure but they will use general anesthesia.  They did give her the ok to eat solids until midnight tonight. Ricki really needed a break in scenery so we went exploring the old hospital and found a beautiful statue of Christ. It was comforting to to have the sweet reminder that he is always there to lift our burdens and help us through our challenges. Next we discovered a peaceful area with a pond. It had some beautiful goldfish that brought a smile to Ricki's face. She always amazes me at her ability to find the joy in her life even amidst the challenges. We got back to her room and her little body had enough and just started shaking and she was so miserable. They were able to give her some medicine and she was able to get some rest.

This morning they are trying to embolize the arteries again and we are praying it goes well. We did get a smile out of her when they came to take her to the operating room the cute ladies told her she was the prettiest patient they had seen. They teased her and told her they needed to check her wrist band because she looked too good to be having surgery. 

We are waiting and praying for a little smoother experience today.

We truly have been carried on the wings of angels and our burdens have been made light. It has strengthened my testimony in the power of prayer. When we first began this journey and I would hear of miracles and I would sometimes doubt my faith and the reality of the power of prayers. But, over the years I have been slowly learning that faith is more about believing that God has a plan for each of us to learn and grow while we are here on this earth. God knows and loves us individually. Tonight as I was visiting with another couple here in the hospital we agreed the only way to get through hard things is to have the faith to put it in Gods hands and turn it over to him.  It is through faith and prayers we are able to find peace in our lives and joy in this journey. 

Back in Baltimore

It has been an extremely busy few weeks getting ready to travel back to Baltimore for the removal of Ricki's tumors that are located between her left lung and heart in addition to preparing my classroom for while I am gone. I just looked over my lists and am amazed that everything got done! We couldn't have accomplished it without so many angels coming to our aide. Those sweet Angels cleaned, cut out things for school, made copies, pasted, sewed, fed us, prayed for us, gave us lots of hugs of reassurance, and were so generous in every way in helping us get to Baltimore. How blessed we are to have such sweet support! 

So that I could get in the first day of school our flight left later and we arrived at the Ronald McDonald House at about 1:30 a.m.  We are resting up today in preparation for her first surgery tomorrow. We will see how our sweet Ricki is doing and try to something a little fun too. 

I have been asked what Ricki's schedule is for her upcoming surgeries.

Friday morning she will have a two hour embolization procedure where they are going to embolize the arteries that are near the tumors in order to minimize the bleeding during surgery.  

Tuesday will be the big day. To remove the tumors they will approach the surgery from her left side. In order to get to the tumors they will deflate her left lung. They are hoping the tumors are not attached to the organs and that they will be able to peel them off her lung and heart. If they are not able to peel them off they will remove most of the tumor. The other concern is that these tumors grow from nerves. These tumors are coming from some of her autonomic nerves. Because of the location of the tumors they are hopeful this will only affect her bodies regulation of hot and cold on her left side. Likely after her surgery her left side will get randomly cold, or have like a hot flash and get sweaty on her left side. 

We have felt peace and comfort as we have approached this surgery. We are so humbled by the outpouring of love and support for Ricki. Please know how much your prayers are felt. The power of prayer is real. It is hard to put into words but when The drs told us of the seriousness of the situation as a family we were overwhelmed and distraught. As soon as others began praying a calm settled over our family and we were given the strength to move forward in faith. 

We finally made it on the plane!

This is a side view of the tumors that are coming out...

Ricki's Bucket List

When it was determined that they would do surgery to remove the tumors  Ricki made a bucket list of things she wanted to do before the surgery. She has been pretty determined but I wasn't sure we were going to be able to pull off her desire to go to Lagoon. Saturday morning began with the long list of things that needed to be done.  It was crazy but during our conversation I just started crying. So while sitting at the breakfast table we decided we really needed to do something fun instead of all  the things on the "to do" list.  We discovered they had a date night special if you came after 5.  The timing was perfect and Angie was able to join us as well so off we went to Lagoon.  We all needed the diversion and some fun. From the smiles you can see it was a pleasant and enjoyable evening ....Ricki even went on the newest biggest ride - the Cannibal.  What perfect Saturday night! 

Surgery Date

Johns Hopkins called and gave us the schedule for Ricki's surgeries... She will be admitted to the hospital on Friday the 25th and have a 2 hour surgery for the embolization of some of the arteries. This will prepare her for the main surgery on the 28th. 

Yesterday we went to Dr Randall at Primary Children's Hospital and he will be taking over Ricki's care when we return home from the surgery. He could have done the surgery for us and there is no doubt he would have done a great job but it was assuring to me when he told me that if he had a daughter with NF2 he would be taking her to Johns Hopkins. 

Now that the date is set we get to figure put plane tickets, place to stay, and all those details....But of course we have to add some fun. The fun keeps our minds occupied with things of a lighter nature. So Ricki has a to do list,.. Decide on a theme, make a few decorations for her hospital room, get some fun pjs and socks, make a pillow case, and do something fun with her hair and get her nails done before  surgery.