Encouraging News!

 

Hello Ava friends! Ava’s been battling a very bad cold but we are on our way down the hill… I think! She got a runny nose on Friday night. She said her body ached and she just didn’t act like herself all weekend. I decided to keep her home from school as she didn’t look well. On Monday we had a beautiful day outside. I was doing yard work and she spent the afternoon outside with a light jacket on. (It was 72 outside.) That night she started coughing. She sleeps in a twin size bed by our bed when she is sick. If she’s not doing good I hook her up to the Oximeter Monitor. This lets me know her heart rate and also how well she is getting oxygen. Her oxygen levels would linger in the 92-94 most of the night but twice they sunk to 88. I would get up to see how she looked and if she needed a cough reminder I’d wake her and ask her to give me a good cough. She would. Tuesday morning I called our local doctor as her nightly destat scared me. She told me that her lungs sounded very tight and that she had a really bad left ear infection. She prescribed a higher dose of inhaler Albuterol and also a Adtivar inhaled disk. (This is a steroid.) She also suggested I start her regimen of Albuterol and Prednisone. We had already been doing the Albuterol inhaler but was wanting her to confirm tightness to start the Prednisone. She also prescribed Antibiotics for her ear infection. I told her we had an appointment tomorrow with Ava’s Orthopedic doctor for a Sine check. She told me if Ava was any worse overnight to see if we could get into see Pulmonary the next day. I assure her I would. Tuesday night was a repeat of the night before. I got little sleep as her monitor kept alarming as soon as she would get to 90% oxygenation levels. Twice again she dipped to 87. I had to get up and physically shake her and ask her to cough. This night she was much harder to wake. We’ve never had this issue before where you didn’t wake easily. She could have just been so tired from the cold her body was deep in sleep. However if she didn’t wake she would choke on her mucus and then that would send me in a panic. We woke early for her appointment. She seemed to be statting better and in a much better mood. By this time she’d gotten three doses of the liquid steroids, three doses of the inhaled steroid, two doses of antibiotics and many doses of Albuterol.

We made it to Iowa City for her spine appointment at 7:30 am. She was still coughing a lot so we masked her as soon as we got inside. Ava sees an Orthopedic doctor because of the increased risk of scoliosis due to her diaphragmatic hernia. And since she has a patch the risk is even greater. She did great with the new x-ray machine. It gives less radiation then the older ones. They explained to us that there are only 25 of these machines in the United States and they were lucky enough to get one. I’m so happy as little Ava has been exposed to so much radiation in her short little life. We never know what damage that will do later on in her life. I found a really interesting article about this new EOS device. http://bsdbuilders.com/what-we-have-done/news/new-x-ray-reduces-radiation.html

This machine looks like a closet. I think Ava thought it was going to move around her and she was a little afraid. We assured her she would be fine. Only Ava had to remain still.

She looked so cute in her little hospital gown and robe. It brought back some not-so-good memories for me though.

Although she didn’t feel well and she had a terrible cough she still had energy to joke and play around with us. The intern asked her if he could shake her hand and she told him no! We all laughed. Then he asked her if she wanted to wear a pair of gloves and her eyes lit up. She put them on quickly and he again asked her if she would shake his hand. She again replied, “No!” She’s a character… she reminds me of my Dad. Her favorite person on this planet of course besides her Mom!

Doctor Weinstein said that he saw no sign of Scoliosis and that her back looked really good to him. We always love to hear good news. He told us that he didn’t really need to see her any longer but I told him that I’d like a follow-up in two years if that was okay. He instantly agreed. I like to keep a close eye on her and that patch and what it could possibly do.

As soon as her appointment was finished we went to the specialty clinic to see if Pulmonary could work her in. They offered us an afternoon appointment. They wanted to do lung function test again before the appointment. I was a little nervous as she had done so much coughing. However she did well with it. We waited and waited then finally the nurse practitioner came in and listed to Ava. By this time Ava had been given two doses of Albuterol inhales so she was feeling a little better and her coughing had nearly diminished. I explained what was going on and the last several day with Ava and she told me that I needed to watch Ava and not so much the monitor. I got very upset inside. She didn’t know Ava nor me. She had not witnessed these weird choking/gagging and coughing episodes the two nights before. She asked me what I thought Ava would do if she was alone in her room. She felt confident that her brain would have sent a message that said to cough as her body needed more oxygen. I wasn’t so sure as she had so much mucus build up and she wasn’t waking even with me shaking her AND she continued to destat. I sometimes wish these “nurses” could experience my life. All the horrible things Ava and our family have had to deal with. She came home with an open abdomen, a wound vac and a central line due to obstruction and reherniation of her Gortex patch. I gave her fluids through her line not from her mouth. I gave her numerous antibiotics through her central line. I pumped her stomach through a small tube that ran from her nose. It was more work that I could even begin to explain. I watched my child almost die and you now I’m having to listen to a nurse tell me to “watch my child not the monitor”. Ahhh.. oh how I had to hold myself back. I prayed that God would help me get through that moment… and He did!

She listened to her lungs and she said their was no crackle. So off we left. I was just happy to know and be reassured she was probably on the road to recovery.

She did MUCH better overnight! I think a combination of all her medicines have helped boot this cold in the butt. Please pray that she continues to get better. AND sorry about some of the venting. I just get frustrated with medical staff that doesn’t listen and lumps me together with so many parents that don’t care. I CARE!

~Terri

Pulmonary Lung function test

Hello Ava friends! Hate to say this but... she's been fighting another cold. She had an appointment with the pulmonologist on Friday for her six month Pulmonary lung function test. Even though she had a bad cold, with the Albuteol medicines she scored a "normal range" result. We are just so amazed at what God keeps doing with this little Lady!

I made a little video of her test. The doctor was pleased at how her technique has improved. It takes a little time to be familiar with how to do the test. She improved quite a bit this time. (We practice at home!) The better the technique the better the results.



She is getting so big. She is now 43 pounds and is 4 foot one inches tall. She's growing better than a weed! She always follows their instruction and is smiling. It's wonderful though we haven't been to the University in seven months!

The Children's hospital of Iowa is under construction right now. It's pretty cool to see all the work they are doing.

The doctor is so pleased with how the cold regimen is going. When Ava gets a cold we start her on the Albuterol inhaler. Then if that stops working then we go to the liquid Prednisone. She stays on that until her cough is gone. Generally being on the steroid for about 5 days the cough starts to fade. She also gets pulled from school to focus on getting her lungs clear. They were shocked that she didn't need anymore steroids that what they had prescribed. When they are happy then I am happy!

She did very well with her test. We are so proud of her!

If you could please say a prayer that she can kick this cold. It started on Tuesday. It got worse and by Saturday night we were up pretty much all night with her coughing. Her stats drop to about 92 then she coughs and they go up slightly. Last night she did much better. Her oxygen levels stayed about 95 and she coughed a lot less. The steroids really do the trick. I told the doctor that those steroid for Ava is a Miracle drug. He assures us that less than a week dose doesn't cause immune depression. She's been out of school since Monday.

I went to Ava's school conference on Wednesday. Her teacher is thrilled that Ava is doing so well. The start of the school year we started an IEP for Ava. This simply means she has a "learning disability" and needs a little extra help. Since she's been born it takes her a little longer to learn things than the average child. However her teacher said that Ava is excelling and is a really good reader. She knows all of her sight words for Kindergarten and is moving onto the first grade words. She loves Math and is also doing well in all other areas of school. She does miss many days but she makes up her work at home. A few weeks ago the school took her out of her special help classes (with my permission) as they feel she doesn't need them anymore. This was HUGE to me. That meant that she didn't need that extra boost of help. She was learning with her teacher basically on her own. She was becoming normal". I love and hate that word.

She can't wait until next week for Easter. The excitement is growing. My parents always throw a large egg hunt. Oh the FUN!

As always thanks for checking in on Ava. We love your support, love and prayers. Keep them coming!!

~Terri

Sledding Nightmare

Hello friends. So Ava once again scares the living tar out of me today. We were sledding at my parents house and Ava and the girls were having so much fun with the snow ramp they had built, when Ava hit the bottom of it a little too hard. We heard her scream and start hollering for me. I had been taking their pictures and was at the top of the hill. I ran to her quickly and knew right away she was hurt. I asked her if she could lay back on the sled. She did and continued to tell me her back hurt bad. I called for my parents (who were standing on the hill) to come help us. I didn't want to move her as I'd been in a accident and broke my back about 10 years ago. It is a pain I will never forget. So I was pretty worried about hurting her further. We decided we were going to take her up to the house on the sled. My Dad, Mom and I carried her on the sled. We calmed her as we walked. I had this fear come over me and I began to pray. I tried to stay positive. We took her inside and she continued to say her back hurt. I made the decision to take her to the hospital.

(This was not the time she got hurt but a few minutes before her accident. As you can she they were having so much fun.)

This was right before we took her to the Emergency room.

My Dad and my brother helped me load her up into their vehicle. We placed her in the back still on the sled. It broke my heart and I was afraid of what was ahead of us. Once we got into the hospital everyone rushed to get her into a room. While in the room she started to tell me her foot had fallen asleep. This made me more nervous.

(This was at the hospital. She was still on the sled. Sorry for the picture quality. I was my phone camera.)

The nurse came in and she said the pain in her foot was much worse. She started crying. When Ava cries you know she is hurting badly. I started to massage her leg and foot as I thought maybe it had just fallen asleep. She said that did help a little. The nurse went right out and got the doctor. He immediately ordered xrays and a few minutes later we were headed to the xray room.

They were able to finally get her off the sled. I was extremely nervous but it went well. I felt so bad for her.

 

 

She's very familiar with xrays so she was at ease as the technician explained what she was about to do. She had about 8 xrays taken. They were very careful with her. I asked her how her back was feeling and said it was better. That made me feel a little better. She had to turn on her side for a few of the xrays. She did well with all of that... all the while I was praying.

She was taken back to the room and about 30 minutes later the doctor returned. He said she had no broken bones. He thought she had just sprained it. So hot and cold compresses throughout the day. I was so happy and relieved. He asked her if she thought she could try sitting up. She shook her head yes. He raised the head part of the bed. He said that if she wanted to try and move she could. He wanted to make sure she could sit and walk on her own before he would discharge her.

We let her do things her own speed. She sat on her own after about 5 minutes then wanted to get down to try and walk. She could walk just fine. Wow was I so happy to see her up walking. Prayers answered!!

As we were walking out of the hospital the ladies that signed her in were SO thrilled to see her walking out on her own. That warmed my heart that they cared so much for her.

As we walked into my parent's house my family started clapping and hollering praise for Ava walking. "Thank you Lord" was my Mother's words!

Ava decided she wanted some mac and cheese first. My family was all so happy to see her walking into the house. Her back is still very sore.

I'll leave you with a happy Ava as she enjoyed sledding but won't do this for quite sometime as she's very scared now.

.
There is NEVER a dull moment around here!!

If you think of it would you send a few prayers up for Ava. She's such a tough little girl. SO blessed as this could have been MUCH worse.

~Terri

Returning to Normal

Hello friends! I did a mini shoot of Ava this afternoon. We just love Valentine's Day and had to share this with you!

Ava's just now getting over the cold she had. She's been out of school for two entire weeks. I'm so thankful we have an awesome doctor that listens and allows her to get better at home. Ava's teacher and school are wonderful at putting together her work and understanding her complicated medical history. The school nurse is phenominal. I really appreciate all her help. Ava's head cold turned into a major thing. She was infected in her nose, throat and ears. I took her back to the doctor yesterday and her ear infection had come back with a vengence. So more antibiotics for her... a lot stronger ones this time. So back to school tomorrow and good thing it is only a half a day. She's not looking forward to going since she's been home so long.

I had a bit of a break down yesterday. I get very anxious about sending her back into all the germs. It's not so much the "normal germs". It's that bronchitis, Influenza A and B are still very prevalent at her school right now. I am always in fear that she will get one of these and her good lung can't handle it. I see her sometimes as she was. I did a poster for the CDH page (https://www.facebook.com/raisingcdhkids) to explain how I feel.

I don't ever want to see her like this again. Colds... very bad colds could put her right back here. I know God protects her and I must trust Him yet my humanly, Motherly instinct takes over and fears the worst. Her doctor reminded me that she's been handing colds pretty well the last few years. She borderlines on needing oxygen which makes me nervous. 

I read this verse today and felt God was sending me an reminder.

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall;  but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. ~Isaiah 40:28-31

I'm feeling well too. I'm getting back to "normal" life. Thanks for your wonderful comments and emails. We are so blessed to have so many awesome family and friends lifting us in Prayer. God is so AMAZING to us! Please continue to pray that He gives Ava protection and that she will get back into the swing of school. We love and thank each and every one of you for the continued support.

~Terri

Battling illness and Mother’s Miracle

Hello Ava friends. Ava has come down with a cold. Yesterday she started having a very runny nose. She’s been sleeping upstairs in a bed beside our bed. She woke up coughing the started to throw up. This is the first time she’s thrown up and not had a bowel issue. I started to panic and stayed up most of the night watching and listening to her snore and breathe. I hate worrying and thinking the worst. I took her to the doctor first thing this morning. She has infection in her ears, nose and throat. She’s taking a strong antibiotic. It’s actually pills. She’s getting quite good at swallowing pills these days. Ava is happy to know the next best thing. So she’s out of school the rest of this week and we shall see about next week.

She’s been doing SUPER in school. I was so proud when her teacher told me she is one of the smartest kids in her class. I had to hold back tears as she told me this. For those that follow Ava’s blog and carepage you will remember last year when her Preschool teacher tried to pressure me into signing her up for another year of preschool. I put my Mommy gut instinct to the floor and told her I felt Ava was more than ready to tackle Kindergarten and all it had to offer. Besides I didn’t want her to be seven years old in Kindergarten. I felt justified in my decision after talking to her teacher. See Ava was in a few special learning classes because of her “disabilites” meaning her health issues. She’s always been a little slow to do things. It took her a few months longer to roll over or she didn’t walk until 17 months. She is slower. However she is picking up reading and finding it fun. It takes a lot to discourage her these days. I was having to pick her up each and every lunch time and bring her home BUT a few months ago her teacher asked Ava if she wanted to eat with her for lunch. Ava was thrilled and then she realized that the school lunchroom wasn’t that bad. She’s grown leaps and bounds. I couldn’t be more proud of this little girl.

So please pray she gets over this cold. God’s been doing a great job of protecting her at school against the germs. I’m afraid as there is so much going on right now. She did get the flu shot so if she does come in contact with the flu it may not be as bad. I’m praying to avoid it.

SO onto my story. I waited to share this as it’s been a very personal and private issue for me. However I want you all to hear my story and know how blessed I am. God hears our prayers and answers us immediately with life saving ways! This time I’m the answered PRAYER and MIRACLE.

On December 18 I got some pretty serious news… colon cancer. It was a shock. I had been having symptoms for a month. (Blood and mucus in my stool) I went to the doctor and he ran a few tests. We learned within a few days I had Clostridium Difficile. C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.

I had been on a round of antibiotics in October but the doctor was concerned that this had taken such a bad effect on my intestines there must be something he was missing. Normal healthy people don't usually suffer these kind of effects from Clostridium Difficile. I felt the need to push for further information. Something just didn't feel right. He put me on an antibiotic to help the infection and I started feeling better.

We had been talking about doing a colonoscopy because I do have a family history of colon issues. The doctor tried to steer me away from one at that point due to finding a diagnosis of Clostridium Difficile. I pushed further as I felt I needed to settle my mind. He happily agreed and a few days later I was being taken to have my colonoscopy. I was a little nervous at what he might find but confident things would be okay.

Waking up and finding out that he had removed a polyp the size of a gold ball was a bit scary. I didn’t know what to think. I swore to myself that I was going to put this all in the back of my mind until I got the results... and that is what I did. I've been down the road where you go nuts searching the internet looking for facts and trying to figure it all out. I felt the complete opposite. I felt calm about it all.

Five days later I got a call from our family doctor. I thought it was strange that she would want to go over my pathology report before my GI doctor got a chance to talk to me but knowing her I gladly agreed and headed out to her office. The entire ride there I prayed and asked God to give me strength and keep my calm. I let myself wonder as I was waiting in the office, "Was this talk going to change my life?" or "Was she just wanting to reassure me all was fine?"  She told me those dreaded words, "Your pathology report... the large polyp... it was cancer. I'm so sorry to tell you... You have colon cancer." WOW... was the only word I could get out. How could this be? She kept explaining things. "You need surgery ASAP... this has to be taken out very soon.""Wow." I said again looking her in the eye. "This was not what I expected."

Leaving her office I asked myself if I was okay. I had a very strong sense of peace that came over me. My thoughts then turned to telling my family. What would Brian say... no wait my Mother... how was I going to tell my Mom? I know being a Mom myself I watched Ava struggle and we nearly lost her more  times then I ever want to remember. My poor Mother was going to take this the hardest. I know with Ava I would have traded places with her in a heart beat if I could. The pain of watching your child struggle is in human. It cuts too deeply.

My family was all very supportive. Brian was shocked. My Mother broke into tears. She was a very worried. I told her not to think the worst. We’d deal with things as they came. We learned from Ava not to get ahead of ourselves. We told Lexis our oldest about the cancer. We told Emeline and Ava that Mommy had a bad part in her intestines that needed to be taken out. I’d be fine.

Next I needed a CT scan and a few x ray before surgery. The tests all came back good. They didn’t find any tumors or growth anywhere else in my body. Great news going into surgery. Surgery came on January 3rd. Four weeks ago today. I was very nervous. It all happened so fast. It still didn’t seem real. Surgery went better than expected. Everything went perfect said my surgeon. He removed 12 inches of my large intestines, laposcopically. I stayed in the hospital for five days.

Here we all are. I was so medicated I barely remember this picture. (The boy is my nephew Blain. A few of my sisters from other states came to be with me during this time.) Ava wanted nothing to do with me in the hospital. It made her very scared she later told me. Bless her heart. The girls were a bit frightened as well.

I can’t believe the toll this has taken on my body. I’ve been so sore and tired. It all happened so fast I don’t think I had time to think about worry.

A few weeks after my surgery I went for my follow-up. He had to reopen part of my incision. Not a pleasant thing. The best part of the visit… he read my pathology reports. Everything tested free of cancer. My intestines my lymph nodes and all tissues- FREE OF CANCER! It was so relieved. I wanted to go outside and scream at the top of my lungs. “THANK YOU, LORD for freeing me of the cancer!”

Life sure takes some twists and turns. I’m healing well. From knowing I had cancer to finding out I was cancer free was less than a month. It’s been four weeks today, since my surgery. I no longer need pain medicines. My incisions and muscles are healing nicely. My insides are a little sore but over all I feel well.

I’m telling my story for a reason. If you have changes in your bowel habits PLEASE take heed. Any kind of blood in your stool is BAD and should be checked out thoroughly. I am 37 years old. I’m young. I shouldn’t have had colon cancer but I did.

I thanked my GI for removing the polyp that held cancer. I thanked my surgeon for removing my intestines. They both told me I saved my own life by insisting on the colonoscopy. I listened to my inner voice. If I wouldn’t have had the colonoscopy I probably would have died of cancer before age 50. Because 50 is when they suggest a colonoscopy. We Moms are important too. To take care of our children we first have to take care of ourselves.

I’m praising God today for giving me MORE years to live and for not only removing the cancer but making me CANCER FREE without chemotherapy or drugs. OH how good God is! As always thanks for following Ava. PLEASE listen to your inner voices!

~Terri