I left on a Thursday (June 14th) and got back home on Monday, the 18th. That's when the craziness started. Either the first or second night, Phillip did not sleep well at all and started mentioning a tummy ache. He was a little glum and just not himself. Naturally, our friends assumed he was experiencing some homesickness. On Sunday, Maddie took him home with her to Maile's because he wasn't feeling well enough to go to church. That night he stayed with Sophie so she could help him through the night. He was absolutely miserable by this point and Sophie said that neither of them was able to sleep much that night. By the time I got home the next day, I could tell it was more than just home-sickness.
I took him to one of the pediatricians in the practice we go to and she thought that it might be strep throat since a lot of kids can present with stomach pains. They took two cultures: a fast acting one and an over-night one. The fast acting one came back negative, so we went home, hoping that the slow-acting one would come back the next morning positive, and we could get on some medication. Poor Phillip had another miserable night of tossing and turning and writhing in pain.
In the morning, 7:30 could not come early enough (when the doctor's office opens), and I called right away, only to find out that the other culture they had taken was also negative. They wanted to see him again. We took him in right away and Dr. Bob (our favorite) looked at him and thought it might be his appendix, so he sent us to Mercy hospital for some tests. They put him on IV fluids and gave him some Toradol (like a heavy duty intravenous Tylenol). The CAT scan and x-rays came back negative for appendicitis. He did have a high white blood cell count, and the ER doctor thought that it might be a bad case of gastroenteritis (bad stomach virus). The IV fluids were making him feel better, so they let us go home.
That night his symptoms came back with a vengeance. He was miserable and I knew it was going to be another long night. I started to wonder if maybe he had a bad case of constipation, so I gave him a glycerin suppository with limited results. Since Dave was gone, I called a good friend of ours from our ward, and he and another friend came over and gave Phillip a blessing which was very comforting. Unfortunately he did have yet another miserable night, so we called the doctor's office first thing Wednesday morning. They wanted to see him again.
This time the doctor wanted us to go to St. Louis Children's hospital and see a specialist. We had to be admitted through the ER and that was a very long day. He was seen by a couple of doctors who could not figure out why he was having the pain that he was. They again put him on Toradol adn IV fluids and he was finally able to sleep. Since the ER doctors couldn't figure out exactly what was going on, they gave me the option of going home again, or admitting him. Because of the past sleepless nights we had had I wanted him admitted so that in the case he experienced another miserable night, they would better be able to help him.
As soon as we were admitted, the doctors on his floor (and as it is a teaching hospital, there were SEVERAL) were very thorough and attentive. They started leaning towards an HSP (Henoch-Scholein Pupura) diagnosis right away, but since he didn't have a lot of the rash that is typical of this diagnosis, they weren't 100% sure. They gave him some morphine and he slept well until it wore off and then they had to give him some more.
Here is a picture of him on day 2 in the hospital. You can see that he is starting to get some facial swelling:
After the first morning of "rounds" when all of the medical students came to look at him and the attending came to talk with us, they were pretty sure he had HSP, even though he still didn't have a lot of the rash. Basically, it is a form of vasculitis, where his blood vessels are leaking into his body. They are also leaking in to his gut which is why the intense stomach pain and the bloody stool.
Day 3:
This was the most miserable day because of the severe swelling. Poor baby. They also could only give him Tylenol because they wanted him off of the morphine and anything else could cause more stomach irritation. He also continued to have much worse symptoms at night and the only thing that would give him any relief at all were REALLY hot baths. We probably gave him 4 of those that night.
Day 4:
You can see the swelling has gone down significantly and we actually got a smile out of him. He still was not eating or drinking enough to the doctors' liking, so they wanted to keep him another night.
Day 5:
Starting to feel much better and just happy to be going home. The doctors did say that while this is self-resolving, it can take several weeks before things are back to normal, and we have to take him to his pediatrician periodically for a urinalysis to rule out any kidney involvement which can be a complication with this. It can also recur, which is unfortunate, but we're concentrating on the positives.
Now that he has been home for almost two weeks, I'm realizing that the doctors weren't kidding when they said this could take awhile to resolve. Shortly after getting home, he did break out in the rash that they kept looking for in the hospital.
Also, because his blood vessels are leaking, he has fluid build up in his joints which causes him a lot of arthritis-type pain. Some days are better than others, but he hobbles around a lot like an old man. Sometimes the pain is so bad that he can't even stand to put weight on his feet. The other night he couldn't even stand up to pee, his feet were in so much pain.
He had a pretty hard night last night. They weaned him off of the steroids he was taking and so I'm wondering if that is why his stomach is hurting him so much again. Last night was a two-bath night. Poor baby, This fetal position is the only way he can get comfortable if he can find comfort at all. I hope this goes away soon. I wish I could take this away from him. Prayers are much appreciated and felt!
