ITP Personal Stories

Kid's Stories

Caelen's Story

Caelen was 13 months old when he was diagnosed with ITP. It was 29 days after his MMR vaccination. He began to bruise significantly fast and it seemed as though they multiplied in front of me... all I had to do was touch him and there would be a hand print on his precious little arms.

Within one day his body was covered in bruises. I took him to our ER here knowing I would be suspected of abuse, and I was... naturally, how else could such a small child have so many bruises? They ran some tests and his platelet count was 1000. Time to panic! The doctor in the emergency contacted the specialist in the nearest children's hospital (6 hours from here). He required a transfusion of gamma globulin, and there was none in our small city. It would be sent from the nearest blood bank, Kamloops, 4 hours away but would not arrive until the next day.

My husband was still at work and had no idea what was going on. Caelen's future seemed so bleak at that moment. How could this be happening to MY sweet little boy? What did the future hold for him? Did he have a future? When my husband arrived we decided that the best thing for all of us would be to go home and spend the night as a family since we didn’t know how many more we would have.

The doctors did not approve of us leaving the hospital with this child. They informed us that if he cried too hard, he could hemorrhage or if we were in an accident on the 3 minute drive to our home, and he was to even bump his head there could be hemorrhaging and in either case we could lose him.

The next morning we arrived at the hospital, thinking we were prepared. Little did we know what was in store for us over the next week! Caelen was admitted to the hospital and taken to the 2nd floor, maternity/surgical. He was in a room with another sick child who was only 7 months old and had been abandoned by her parents. The overworked nurses were her only caregivers. The nurse that was assigned to Caelen was also the little baby's nurse and she was still a student.

The lab techs came up to get Caelen ready for the transfusion and it took them almost a half hour to get the IV into his little arm. The tech doing the procedure was training and had never put an IV into a child. I had to leave the room while my husband held Caelen down for them to do it. I justcouldn't handle it! They had to put it into his wrist and splint him, as they couldn't get it in anywhere else since his veins kept collapsing. By the time they were through with him, his arm was so bruised that almost the whole left arm was black! They got the IGG all mixed and ready for him and got him going.

This transfusion took 14 hours! And they were checking his vitals every 15 minutes. nfortunately, as well as being understaffed at our little hospital, they also did not have the proper equipment so my son's vitals were taken with equipment that was not designed for infants. This also caused a lot more bruising.

About one hour after his transfusion was done; they took some more blood if anything had changed. No change! How horrifying for us. After all this, the one and only pediatrician in our town was called, against our wishes. He ordered a series of tests including a chest x-ray to rule out pneumonia. When we questioned the tests, we were told that this doctor always orders these tests whenever he takes on a case. We were not told what all this included and although we didn't feel it was necessary as he was already diagnosed we went along with it. So we took our precious son down to x-ray and proceeded to watch him scream his little heart out as he was strapped into the tube they use for infants chest x-rays. Remember we had been told that if he cried too hard, we might lose him to brain hemorrhage! When the chest exam was done, the tech informed us that it wasn't clear enough and she would have to do it again. We left. When we got back up to the second floor, we informed the doctor there that we would be taking our son to the children's hospital and would like him to call the air ambulance so we could get him there safely. This doctor refused as Caelen's case was not critical enough. We had him call the specialist in Vancouver and he also said that our son needed to be there.

So although we were advised not to drive the three minutes to our home the night before because we would be endangering Caelen's life, we were now forced to get into our vehicle and drive the 6 plus hours to Vancouver. This drive is through the Fraser canyon and can at times be a treacherous drive. High elevations were only one of our concerns on our way. On the drive, Caelen suffered from some of the side effects of the transfusion, fever, vomiting, and diarrhea.

The specialist in the children's hospital was Dr. Wu. He had made arrangements that when we got there we were to admit through emergency because that was the only way we could get him there fast enough. The nurses were expecting us and when we arrived they were most helpful. We had the nurses in our town leave his IV in as it was so hard to do in the first place but when the nurse in Vancouver was examining Caelen for admittance to the children's hospital she was a little concerned. She could not identify the IV and was not sure if they had compatible equipment to use it. She called in another nurse who was their "IV" nurse. She examined the IV and discovered that they could use it. The reason the other nurse did not recognize it was because it was actually and adult sized IV. No wonder it took them a half-hour to get it in!

Once admitted we were put in a room with 3 babies. The hospital had no room for us but Dr. Wu felt we needed to be there. We had the nurses bring a single bed for our son and a cot for one of us. This was the only way that we could both stay there. We took turns sleeping in the single bed with him, if you could call it sleeping.

The first thing that had to happen was a bone marrow biopsy. They wanted to rule out leukemia etc. He was to be awake for this procedure but heavily drugged. They did not want to chance putting him under. As it was, they had to give him so much medication that he was knocked out and had problems breathing. The doctors in the pediatrics decided that they had to give him narcan to bring him out of it. There were two doctors consulting on his case and both were still student doctors. They could not agree on how much to give him so as not to bring him out too quickly.

Now remember that we had been told that he could bleed to death with even a bump on the head and this was Thursday now, two days without sleep for both of us. One doctor left and the other administered half the normal dosage of narcan. As Caelen was coming out of his drug induced sleep, the other doctor left too, and all the nurses. Before the doctor left he told me I might want to sit on the bed with Caelen so he is not shocked as much as he wakes up. Well, he woke up very rapidly and as a result, was very disoriented. He began thrashing about and I couldn't hold him still. As my son awoke, I watched him bang his head and arms several times. My husband went to the nurses' station to get someone to help us. The other sick children's parents were all watching in horror, as well as my Mom, Dad and Mother-in-law. No one knew what to do.

The next thing I knew, I was covered in my son's blood, as was he and the bed. By this time I was yelling for help. My husband was back and no nurse was with him yet. I was panicking. I thought my son was dying in my arms.

In all of his thrashing, he had pulled the IV line loose from the IV in his arm. The result was the blood backing up the IV and out onto everything. As I held the line so no more blood could escape the nurse came in. When she reached for the line I let go and left the room. At this point, I finally broke down. I went into the bathroom down the hall and collapsed on the floor unable to hold even the weight of my own body. As I wretched into the toilet, my mother was knocking on the door. I hadn't locked it and she came in. Caelen is her first grandchild and she was as upset as I was. People passing by were knocking on the door to see if I was OK because they could hear me sobbing and retching. After what seemed like forever I was able to pull myself together enough to go back to the room. I did not want my son to see how upset I was. Needless to say, the staff was very apologetic, though that didn't make me feel any better.

The biopsy came back negative for all the things they tested, so they proceeded with the second IGG transfusion on the Friday after this all began. As the nurse hung the bag on the stand, I noticed that it was much smaller than the one that was used at home. So I questioned her about it. A little bit hesitantly, she told me that the IGG could only be hung for 4 hours at a time or it would go bad and that she would be by every four hours with a new bag! At home, they had hung one bag for 14 hours. Naturally, she would not say anymore about it.

Even this seemed to take forever. Caelen is and was then a very active child. He had been walking since eight months and was well onto running by this time. He was sickly looking and covered in bruises, but full of energy. He had two black eyes from rubbing them and large swollen bruises all over his head from the splint on his arm. It was very hard on all of us to try to keep him as inactive as possible. The doctors were afraid of complications so they could not sedate him at all.

Once the transfusion was completed, we waited about an hour and they took some more blood. He had only improved marginally so we had to stay at least another night for observation. On Saturday, his platelets had risen to 56,000. That was quite an increase from 1,000!

Dr. Wu allowed us to leave, but we had to come back on Monday for more blood tests to be sure it was remaining. We drove to an aunt and uncles house and stayed there. On Monday, we returned to the hospital for the blood work. When the results finally came back, his platelets had dropped to 30,000 but Dr. Wu was going to let us go home and have our family physician observe him. We were to be sure not to have him exposed to the chicken pox and to have his blood work done every week for six months minimum!

Dr. Wu informed us that this had been brought on by Caelen's recent vaccination for MMR and that we should not have him vaccinated with any live viruses. When we left Williams Lake, our family doctor had been away on holiday and during our stay in the children's hospital he had called to see how things were going. We were glad to have heard from him and to know that he had been in touch with Dr Wu.

After arriving home we investigated things a little and were in touch with the local health unit. They were aware of the situation, as Dr. Wu had been in touch with them as well. They were launching an investigation of their own and would be in touch with the Provincial Disease Control Centre. They kept in touch with us and also informed us that Caelen's case was passed onto the Atlantic Centre for Disease Control. Caelen cannot travel abroad without consulting the ACDC and he no longer has any immunizations.

We continued to have his blood work every week for 6 months, then every second week for about 4 months and then once a month for another 3-4 months. We still have blood done whenever he gets sick and watch him very carefully for bruising. We had a couple of scares when his platelets have dropped but they for the most part stay above 100,000 now.

Caelen is now 3 yrs. and 2 month old and I am now 39 weeks pregnant with our second child. We are very unsure if we will chance immunizations. They say this is not hereditary but we are still stuck between a rock and a hard place. I hope that no one else has to have such a horrible experience in such a time.

Caelen's Mom (kevin_glenda@shaw.ca)

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