Sunday, July 16, 2006

Donaldson family heart story submitted by heart mom Rebecca Donaldson.

HISTORY: Peyton was diagnosed with a heart condition when she was 8-weeks old. Mom was suspicious of something being just not right with Peyton after she was born. Within an 8-week period of time Peyton was seen by her doctor’s office 10 different times. Each time the various doctors thought that her formula did not agree with her or that she was just a fussy baby. As the days turned into weeks, Peyton’s symptoms increased from not being able to sleep flat, to projectile vomiting, to continuous cold hands and feet. She started sleeping in her car seat because if I placed her in her cradle or my bed, laying flat would cause her instant pain and discomfort. She was put on a special formula and we were told to give her 1 ounce of camomile tea daily. The doctor thought this would calm her.

On October 22, 2004 she just was not acting right, something was wrong. She was eating less and less, she had not gained any weight in over two weeks and she was extremely fussy. It was Friday evening and she had been attending day care as I had to go back to work when she as 6 weeks old. I kept thinking that maybe she had an ear infection so I took her back into the doctor’s office. After an exam, the doctor was not sure what was going on and told me to go ahead and get her dressed. As I was getting ready to leave the doctors office yet again totally frustrated, the doctor brought in her little laptop and started going through Peyton’s file. She asked me to get her undressed again. She did another exam and told me that she believed she heard a murmur and referred me to Salem Hospital for an x-ray and EKG. She told me to do this anytime over the weekend. She herself would be out of the office for a few days so she would have the report sent to another doctor for review.

Well not wanting to waste anytime, I quickly came home and made arrangements for Levi to stay at a friend’s house and Keith and I took her into Salem Hospital that same evening where an EKG and X-ray were performed. Over the weekend Peyton started having diarrhea. She would have 1 liquid watery diaper every hour or so. This continued over the weekend. On Monday, she went to day care and I went to work. I called the doctors office as soon as the phones were switched over and left several messages for someone to call me back with the results. After many unsuccessful attempts, I called someone who I knew had access to the x-ray report and asked if they would please read it to me. By now I’m just sick to my stomach and furious with the doctor’s office. The x-ray report came back and showed an enlarged heart and an echocardiogram was recommended.

Since Peyton was still “sick” I called the doctors office and finally got an appointment with her regular pediatrician for Monday later in the afternoon. During lunch time I finally got a call back from one of the doctors. She told me not to worry and that the x-ray report really wasn’t too bad. At this point I am furious and interrupt her and tell her that I already know what the report says I want an echo scheduled immediately. She gives me this song and dance that OSHU comes down once or twice a month and does them at Salem Hospital and she would see when she could get us in. WHATVER!!

That Monday afternoon, both Levi and Peyton are taken in to see Dr. Gilbert since they both have been “sick”. I only wish I had taken Peyton to Dr. Gilbert sooner. He is such an awesome doctor and always booked so he actually had not seen her since he discharged from the hospital when she was born. Levi was diagnosed with a sinus infection, again, poor guy. Peyton was examined thoroughly and Dr. Gilbert knew right away something was wrong with her. I’ll never forget the look on his face when he told me she was a sick littler girl. It was too late to get her into Doernbecher that day for an echo as everybody was already gone so he had us go up there first thing in the morning. On my way home from his office, he called my cell phone and asked me to take her over to Salem Hospital for labs and 02 saturation check, which I did.

The following morning, Tuesday, October 26, 2004, our lives would never be the same only we didn’t know yet. We got Levi off to school, and were on our way to Doernbecher. Of course we got lost and then I realized I had forgotten her diaper bag. We had spotted a Fred Meyers so I ran in and got diapers, wipes, formula, and a bottle. Dr. Gilbert called me on our way up there, he was hoping we would had been there by now, so I had to explain to him that we had gotten lost and forgot her diaper bag. He gave us directions and we were one our way, not realizing how close we were to the hospital.

The strangest thing happened when I walked down to the 7th floor. The receptionist looked right at me and asked if this was Peyton, I hadn’t even gotten all the way to the desk to check in. When I told her it was Peyton she directed us to the 8th floor where we were quickly taken back to a room. The echo tech was in and out of her room, only we didn’t know why. She was constantly interrupting the echo procedure and would leave then would come back in. 45 minutes later, we were done and sent back down to the 7th floor. This time we were given a “lifetime card” with Peyton’s rank and serial number on it. I remember Keith saying how neat that was. We weren’t quite understanding what was about to happen. I remember some lady coming out from the back and asked if Peyton was here yet. The gal that was checking us in pointed to us and told her she was getting her paperwork in order. This nice lady called us out anyways and took us down what seemed like this long hallway and into a procedure room. She had us get Peyton undressed and she took her weight and vital signs. I remember Keith saying to her either something is really wrong here or you guys have exceptional customer service. The nice lady commented on how they pride themselves with having good customer service. Then in walked some guy and another lady. The nice lady left the room. The man introduced himself as Dr. Silberbach and the gal with him was an internist. Keith asked him what was going on. Dr. Silberbach wasn’t quite sure yet as he had only heard the rumour that she was a pretty sick little girl, he himself actually had not seen her echo yet. I’ll never forget Keith telling him that we didn’t like rumours and to find out exactly what the hell was going on.

Dr. Silberbach did just that only to come back moments later with devastating news. I don’t remember too much only that something was wrong Peyton’s heart and that we were both crying and Peyton was being admitted to the ICU.

Most of that day is a blur to me. I remember somehow that Levi was picked up and taken to his grand parent’s house where he stayed for the next three days. Friends and family and our employers were contacted to let them know what was going on. She was admitted on Tuesday, I remember Dr. Silberbach making phone calls to specialists all over the place trying to figure out the best way to care for her. Our best bet was to try a beta blocker. This seemed to work well the first night and it was decided that the next dose would be increased. That next dose pretty much wiped her out. She was so lifeless.

On Thursday things were not looking good for PJ at all. I will never forget when Dr. Silberbach told us she needed a heart transplant and she needed it quickly or she would die. I remember sitting at her bedside wondering why all of this was happening. Why wasn’t this caught when I was pregnant, or after she was born and then in walked the hospital Chaplin, he wanted to give Peyton a blessing and not two seconds later in walked Bishop Ballard, from the Mormon Church, he too was there to give Peyton a blessing although we had no idea how he knew about her or that she was even there. All we knew is that all of sudden there was not one but two men of God standing before us, each wanting to give her a blessing. I remember Bishop Ballard standing over Peyton praying but Keith and I were crying so hard I don’t remember what he said. I just remember this calming feeling and then he was gone.

Things moved fairly quickly after that. We were told we would have to go to Loma Linda where Dr. Bailey would take over her care. We kept saying who is Dr. Bailey and why us? We initially had a phone conference with someone from the Transplant Team in Loma Linda. We were told that the insurance company (go figure) was bartering about where Peyton had to go and who would fly her there. Dr. Silberbach was quick to straighten them out and got “approval” to have her admitted to Loma Linda.

We initially were told she would be taken by air ambulance probably Monday or Tuesday and to go home and get our affairs in order and to figure out which one of us was going to fly in the air ambulance with Peyton. We were told that both of us could fly but we were undecided at the time on exactly what was going to happen. We had to make arrangements with our employers, who was going to watch the house, how we were going to pay for all of this, etc. etc. Have you ever watched the movie John Q? You know exactly what I mean….but more importantly we still had to figure out how we were going to tell our little boy that his new baby sister needed a new heart.

After being home for a little bit and talking to Levi, Keith took Levi out to get his Halloween costume, as it was after all Friday the 31st, Halloween. It was also my oldest sister’s birthday.

I stayed at home to make the necessary phone calls and get things packed. While I was trying to grasp exactly what happened to our family in 3 short days my cell phone rang. It was the nurse at Doernbecher. The Panda Team was in Peyton’s room waiting for us. I didn’t quite understand what she was saying to me. She then told me that she was being taken by air ambulance and that one of us needed to hurry up and get there.

I never did quite figure out how we went from leaving on either Monday or Tuesday or next week to leaving ASAP. I called Keith and he told me to get over my fear of flying and pack a bag and that he would stay behind and take Levi trick-or-treating that night and they would drive down on Saturday morning. My best friend Stephanie had come over that morning to help us out. She ended up taking me up to Doernbecher and took care of our house and dog while we were gone. It was such a whirlwind that week; I don’t know how we survived it.

I still get sick to my stomach when I think about that air ambulance flight. It was so cold that night in Oregon, we actually had freezing rain.

Peyton and I arrived in Loma Linda at 10 Friday night, it was the first time she had opened her eyes since Wednesday. She actually smiled at one of the Panda Team Members while she was being transported down the hall to her new room. It was such a scary place at first. The hospital hall ways were packed with people. The city was devastated by the fire; it basically had been on fire earlier that week. I remember feeling like I had arrived in hell.

The first doctor I meet when we get in Peyton’s new room in Loma Linda was Dr. Slaughter. I couldn’t take anymore; I was taken by security an hour later to the Ronald McDonald House. In the morning Security picked me up and took me back to the hospital. (I was told not to walk anywhere alone outside the hospital) See Loma Linda is an excellent place for care but in a very horrible area. They weren’t kidding either.

On Saturday morning my Dad and mom (in California, yes I have two sets of parents, one in Oregon and one in California :}

Anyways my Dad and Mom met me at the hospital where they met their new granddaughter for the first time. A few hours later Peyton was diagnosed with pneumonia. Her breathing became more rapid and she was placed on a ventilator. Sunday couldn’t get here soon enough. Keith and Levi finally arrived early Sunday morning. Poor Keith, he went straight to the hospital to see Peyton instead of meeting me at the Ronald McDonald House liked we had planned. It was early, only 6 am. And he hadn’t seen her since we left on Friday morning at Doernbecher. Since it was so early you could only access the hospital through a security area. The guard asked him who he was there to see, all Keith could get out was her name and heart transplant. The security guard ended up walking him and Levi up to unit 5800. Levi wasn’t allowed to see her due to their strict hospital rules so he waited in the hallway while Daddy went in to see his baby girl. It was an emotional time to say the least.

Well Peyton received her new heart on November 25th and 26th of 2003. Six weeks later we brought our family home to Oregon. Peyton receives all of her postop transplant care at Doernbecher Children’s Hospital in Portland, Oregon. She has had 6 biopsies so far and scored a nice big fat 0 on 5 and scored a 1a on one. She is a very beautiful healthy happy little girl. She is full of love and life. We are so thankful everyday to the donor family to show such courage during a very difficult time in their lives. Through their selfless act of love and kindness they gave our daughter life and for that we will forever be thankful.

It’s been a difficult road these past two years to say the least. Six months after Peyton’s transplant I ended up quitting my job to stay home and take care of her. I have since taught myself medical transcription and work from home to try to bring some income into the household. It has been rough with only 1 insurance now and losing half our income when I quit. We are now in the process of selling our home so that we can afford all of the transplant medications and those never ending medical bills. We are very fortunate to have Peyton with us today. So many children die every day from CHD, we are truly fortunate to be so blessed to have her with us. She is truly a miracle in every sense of the word.

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