Checking in from St. Jude

It has been a long week, and I haven't been able to post anything because the hospital we were in didn't have internet access.

On Tuesday I took Chet in for counts. I could tell he was looking a bit low, and wanted to make sure it was safe for him to try to earn his swimming merit badges that night. His platelets were at 5,000, and his other lines were down as well. The arrangements were made to take him to get the platelets, and since we thought that was all we would be doing we just got in the car and left thinking we would be home in a few hours. From now on, we are going to have an overnight bag ready to go at a moment's notice.

He was given his platelets, and we were on our way home surprisingly early. He was released at 11:30 pm. We were halfway home when he began to tell me his stomach was hurting, and it was getting worse. Thombrosis (clotting in the stomach and brain) is a problem for PNH patients, so I immediately called the doctor on call at St. Jude who told me to get him to an ER to see a pediatrician. I called his local doctor to see which ER I should go to since we were about the same distance from the one we came from and the one closest to our house. He sent me back to the city, and we got back about 12:30am. My cell phone battery had died, so I couldn't call ahead to the ER to tell them what was happening and that we were on the way back. (The next purchase I need to make is a car-charger)

The rest of that night was spent in the ER. Chet had had a pancreatic attack, which was causing the severe pain. He had bright red blood in his urine (which is another problem from the PNH... it means he was experiencing an increase in the breakdown of his red cells. There is a medical term for it I cannot think of right now.) He was given morphine, and he was finally able to sleep, and hooked back up to an IV. I have no complaints about the doctors and nurses there, and this isn't meant as a complaint, but since this is such a rare disease we spent quite a bit of time that night sharing what we did know about this disease with the doctors there.

At 6 am he was admitted to the hospital and put in a room. Jack had already gone home to make sure the kids were ready for school, and Chet and I went to sleep for a couple of hours. By the time we woke up he was no longer in pain, and the blood in his urine was dark brown instead of bright red. The doctos at St, Jude asked the doctors there to have an ultrasound done to check for clotting, and that showed everything was normal. (I told him that the good news is that he isn't pregnant.... he giggled at that.) By the end of the day he was eating again and his urine was clear. We thought we were on a fast track home. Then the doctors said they wanted to see what his counts were in the morning to make sure his liver and pancreas were completely normal.

So the next morning the counts were taken and his platelets were falling extremely rapidly. His other bloodlines were falling too. His red cells and white cells were very low, and the doctor said if he didn't know he had PNH he would think he had developed severe aplastic anemia again. He called the doctors down at St. Jude again to see if he should go ahead and give him more platelets, or possibly whole blood, and his doctors decided they wanted him down here for evaluation. (His doctors and nurses were rather fascinated by him there... they don't treat very many patients with such rare diseases, and he looks so perfectly healthy as well as being such a calm patient that I think he really won some of them over.)

An ambulance was ordered, and within an hour we were on the way. I tried to follow the ambulance, but once we hit the freeways I never saw them again. We had made arrangements to meet Jack in Conway, and he brought Beth and some changes of clothing to me there. Again we got on the freeway, and finished heading into Memphis, and again I never saw the ambulance again. I got pulled over just outside of WestMemphis, but when I let him know why I was driving so fast the officer let me go. He even told me that he had seen the ambulance and I wasn't too far behind.

After arriving, I found Chet in the treatment room, and his doctor came and did an evaluation. Then they taught me how to flush his IV line. I have never wanted to be a medical practitioner of any sort, but I have been receiving a lot of new medical knowledge this last month. After another set of counts showed he wasn't in any immediate trouble, we were sent to the family hotel to sleep. Oh heaven...real beds.

Today we went in for the first set of testing, and his counts are still falling. His platelets fell another 3,000 in just the few hours between being discharged last night and the early am appt today. I don't know yet what the PNH test level results were.

Chet has had some terrible IV experiences the last couple of weeks, so a ChildLife specialist came in and talked to him about it for a while. She brought an IV doll and went over the entire procedure with him, explaining every step. Then she taught him how to try to relax and be calm through the process, and gave him a "coping bag" for his next IV stick. It is full of stress balls, a 20 Questions game, and a pinwheel to focus breathing with. I think she did a great job, and he seems to feel better about the idea of having to have IVs. Beth took the little IV class with him. I have some pictures I will upload later when I can get them loaded.

We are going to be here until at least Tuesday. There are several more tests being planned, and the results of those will determine what happens next.There has been talk a couple of times about the possibility of seeing if it is time to have the marrow transplant. Chet feels fine, though, and looks good, so that makes all of this lot easier to handle. Jack and the kids wanted to come down last night for the weekend, but there have been a lot of thunderstorms with tornado warnings there and here. If we are still here next weekend they will try to come down, but we are hoping to be home by then.

Tomorrow is a free day as far as testing goes, but I think we are going to stick close by. He is still getting fatigued extremely quickly and his immune system is down, so there is no reason to take any risks that can cause him more problems. My phone should be working tomorrow since we won't be in the actual hospital building, so feel free to call if you need to. I will post when I hear more.

Thank you to everyone who comes together to help out in so many ways when these crisis times come. We are so grateful for all of you.