Bumble Bee's Story

When Bumble Bee was 4 months old, she had her first asthma episode. I took her to the hospital where she received a breathing treatment and had oxygen levels in the low 80's. The hospital didn't think much of her numbers saying the equipment wasn't reading right or it wasn't made for babies so it wasn't accurate. I didn't think much of it either at the time. Being new to all of that I figured it was ok and assumed they knew what they were doing. In the next year and a half she had quite a few more asthma episodes and every time, she was still getting readings in the low 80's and every time, the hospital blew it off. (Unfortunately we HAD to use this hospital because of our insurance at the time)


When she was 22 months old, she was more sick than I had ever seen her. She was lethargic and pale. She wasn't eating or drinking. She didn't even have the energy to cry much. I made her an appointment with our pediatrician for later that day but the more I watched her, the more I knew she had to be seen right then.


Scott's job had just changed insurance companies so we were able to take her to any hospital in town. I took her to the closest one. The waiting room in the ER was packed. I thought we'd never get in there. My poor girl was still very lethargic and the only way she was comfortable was when I was holding her upright. If I laid her down in my arms, she would cry a very weak cry. So I held her for 4 hours waiting until we were finally called in for Triage.


Once the nurse hooked up the Pulse-Oximeter to her finger, it read 74%. I'll never forget seeing that number. The nurse thought for sure that couldn't be right so she put another probe on her. She got the same reading. She told me to wait right there and she ran to get a dr. The next few minutes were all a blur. The dr took her from me, took her into a room and the room filled with drs and nurses. They started an IV, took x-rays right there in the room and told me she needed to be transported by ambulance to the children's hospital. She had pneumonia and RSV.


I was taken into another room so I could call Scott. I remember walking back out into the hallway and losing it. A sweet older lady was out there waiting. Her husband was in another room being examined. She hugged me and prayed with me and told me that everything would be ok. I needed that right then.


Scott came and I rode in the ambulance with Bumble Bee. He followed closely behind.


We got the the children's hospital where it was confirmed that she had pneumonia (in addition to RSV) She was admitted and we spent the next week waiting for her to improve. She never did.


She was on high doses of antibiotics and it wasn't helping the "pneumonia" clear up. She had percussion therapy where they would pound her chest lightly with this little rubber tool to clear the lungs. She was having that 3 times a day and it never helped. She was on 100% oxygen this whole time and her oxygen level never went above the low 80's the entire time.


Her red blood cell count was triple what it should have been and they couldn't figure out why. They did a bronchoscopy and they suctioned out her lungs. It didn't help. They did the sweat test checking her for Cystic Fibrosis. It was negative (thank goodness) But they STILL couldn't not figure out why she wasn't improving. They were talking of sending her to Lucile Packard Children's Hospital in Stanford. But first, they wanted to try one more thing.


Finally they called in a Cardiologist who ordered a CT Scan. Once they did the scan, he thought he had found the problem. So, he ordered another one to be done the next day with contrast.


That night, while she was sleeping, I prayed harder than I have ever prayed before. I didn't pray for her to miraculously get better that night, although I would have been more than happy with that. I just simply prayed that the Dr would find whatever it is that was making her so sick, and fix it. After I prayed, I felt positive for the first time since this all started. I knew that God had listened.


The next day came the CT. After it was over, the cardiologist came in our room looking happy. They found the problem. And it could be fixed.


He told me that she had a pretty rare problem in her right lung. She had a large Pulmonary Arteriovenous Malformation and it was causing her oxygen to be dangerously low. He sat with me for a long time explaining what it was, what it was doing to her and how they were going to fix it. (He also said had I not brought in her in when I did, she might not have been here the next day. The scariest words I will ever hear) The next day she was scheduled for a Cardiac Catheterization and an Embolization. (The Cardiac Cath in this case did not stop at her heart. It had to go through her heart and into her lung)


The next day came and it was time for the catheterization. They gave her something to relax her so they could take her in the room without me going in with her. We got to walk her down, and hand her over.. That was one of the hardest things I have ever had to do. Scott and I went back to the room and waited for what seemed like forever. (It was actually about 4-5 hours) We finally got to go down to recovery. She was not a happy girl but for the first time I noticed, her lips were pink. I had always thought that grayish-blue color was just her. That's how she had always been.


After spending time in recovery we were taken to the Cardiac Care Unit. There she was told she could eat whatever she wanted. She wanted pizza! It had been days since she had an appetite and since she had had so much energy! We ordered her a pizza and she ate quite a bit!


The next day, she got to come home. It was SO nice to be home and it was even nicer to see how much more energy she had. We always thought she was just a quiet girl. But she changed! And it was good. :)


We got a call from her cardiologist a couple of days after her release saying that he wanted to refer us to a Geneticist. He said that usually, Pulmonary AVM's just don't happen without a cause. So he wanted them to look into it further to see if she had a genetic condition that we didn't yet know about.


We got the appointment pretty quickly. We spent over 2 hours with the geneticist that day. They looked Bumble Bee over from head to toe, found some telangiectasias, took pictures and documented everything. I was told about this genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT). She told me at the time, there was no way of testing any other way than a clinical diagnoses. And from what they have seen, Bumble Bee definitely had it. (About a year and a half later, they finally came out with DNA testing and with that they did manage to find Bumble Bee's mutated gene for HHT)

Early on in 2004 I noticed that Bumble Bee was getting easily tired once again. I thought it was possibly her PAVM so we had it checked out. The Cardiologist thought everything seemed ok and said she would be more tired than other kids her age, so we let it go. I did notice then that she was drinking more and more. I kept mentioning it to family members who said she was drinking a lot because it was hot, or she was bored, or that's what kids her age do, etc. So, I let it go.

We moved to AZ in October of 2004. It was still in the back of my mind that she was drinking a lot but still, I let it go. In January I noticed that she was also going to the bathroom a lot more than usual. When I mentioned those concerns to others, I was told she was peeing a lot because she was drinking a lot. They were trying to tell me not to worry but I was still concerned.

I made an appointment for a well check. The appointment was set for February 18th. A few days before, she started getting up in the night 2 or 3 times to go to the bathroom. I just knew then that something was wrong. Diabetes was in my mind, but I had no idea how serious it was.

I took her to her appointment on February 18th and mentioned my concerns. Thank goodness the pediatrician listened to me and took my concerns seriously. They did some lab work and said they'd call me if anything was wrong.

The next day I got a call. It wasn't our regular pediatrician. He was out for the day. It was his partner.

"Mrs. (Last Name)?"

"Yes?"

"This is Dr. (Last Name) from (pediatricians office). I was just looking over the results of your daughter's lab work. Does she have Diabetes?"

"Well, she was tested for it yesterday and I was told I would get the results today."

"Well, I'm sorry to tell you, but she does have it. We need you to get to (children's hospital) right away. I'll call and let them know you are coming. Get there as soon as you can."

By now I am in shock and I asked what I now feel was a stupid question.

"So what does this mean? Will she have to be on medication? Pills or something?"

"No Mrs. (Last Name) She will be on insulin shots. This is Type 1 Diabetes and it is very serious. Please get her to the hospital now. I'm very sorry."

And that's when I lost it.

I called Scott at work and he immediately came home. Neither one of us knew how much our lives had just changed once again.

When we got to the hospital, she as admitted for 5 days. Luckily we caught it fairly early.

We had a crash course in how to take care of our daughter and keep her alive. You can't learn everything you need to know in 5 days. But after the 5th day I guess we had learned enough to take her home. It was scary. Very scary. But together we managed.

That same year it was found that her Pulmonary AVM had gotten bigger. She had another Cardiac Catheterization to embolize it. This time they used an Amplatzer Vascular Plug.

Her Endocrinologist became concerned about her lack of growth. He mentioned his concern at each visit, but in the end attributed it to the fact that she takes after me. (I am only 5ft)

She started to get a lot of headaches and leg pain. It was so bad she would wake up in the night crying. The worst problem she was having was severe stomach pain. She would literally scream in pain throughout the day and she was constantly in tears. She seemed very sad and irritable a lot too. She had her yearly lab work drawn and it showed nothing too concerning. I mentioned my concerns to the Endocrinologist and told him all the trouble she had been having. I told him I was worried she may have Celiac Disease. He said her lab work looked ok but if I was concerned I could just stop giving her wheat. We changed Endocrinologists shortly after that.

I made an appointment on my own with the GI Specialist. The day of our appointment he listened to my concerns and decided to do a biopsy for Celiac. The biopsy was scheduled for a week later.

Immediately after the biopsy, the GI Specialist told me he saw quite a bit of damage but he would call me within a week to confirm her diagnoses. About 5 days later he called and said she tested positive for Celiac. She has been on a Gluten Free diet ever since and is doing MUCH better.

it was thought that once again her PAVM had grown. They did another Cardiac Catheterization but once they were in there found that everything was still closed off with the exception of a few tiny ones that they couldn't get to (but were not causing immediate harm) We are keeping an eye on those.

Bumble Bee is a very strong, very brave girl. She has been through a lot more in her lifetime than anyone should ever have to go through. She amazes me every day with the things she has to deal with. I wish I was half as strong as she is. She's wonderful, she's amazing, she's brave and strong. She is my hero and I am lucky to have such a wonderful daughter.