Friday, March 31, 2006

Well, here I am behind my computer again ... so that's a good sign!!! This e-mail is an update on the situation with James. Since I don't know how well the grapevine has worked, I'm just sending this to everyone on my general update list, so nobody is left out. With that in mind, I'll start at the beginning as some of you may not know what's going on at all - not that we really do either!! :)

Monday night James woke almost every hour, crying and unhappy; even a bottle wouldn't console him part of the time. But all in all he went back to sleep each time, so come Tuesday morning I just grumbled about this boy who couldn't figure out how to sleep through the night ... it's always something with him. He continued to be a bear throughout the morning, and even though we had company he did not want to play or do anything, he just sat on my lap and was rather sleepy (after already having a morning nap). He woke up from his afternoon nap absolutely miserable. I decide to take him in to see if his ears were bothering him. After I called he got worse and would just sit there screaming, or throw himself on the floor. I started remembering little Rebecca screaming her head off and how impatient I was with her ... and how bad I felt later when I found out she had bladder infections ... so I tried to be more patient with James. Thankfully I had urine bags in the house and decided I'd get a sample right away to be tested when we went to the doctor.

The doctor squeezed us in at the end of the day ... James put on a good show for them too :) ... screaming and crying!!! His ears and throat were slightly red, but nothing to be concerned about. I'm so glad I brought that urine sample so that they could rule that out right away. The doctor then noticed that his lymph nodes were swollen in his groin area. They were also in his neck area, but this isn't uncommon with a cold ... the groin area would not happen with a cold.
We were sent down to St. Joe's pediatric short-stay (basically pediatric emerg). As we arrive he began to throw up ... so my first thought was it was all a bad stomach virus ... and the doctors leaned to this at first, but said they'd keep him to monitor him since he was throwing up and screaming and obviously in pain. A more thorough exam and they noticed his liver and spleen were enlarged. So he was sent for x-rays. The x-rays showed air in this bowels and they thought this was causing an bowel intrusion, hence the extreme pain. From here he was IV'd and a tube put in his nose to let the air out and transferred to Mac for possible surgery. At Mac we started the battle all over again ... more tests, doctors, blood work ... poor guy just screamed and screamed and then every once in a while I did manage to get him to sleep enough that he wasn't in pain anymore and another doctor would want to push and prod at the guy and there I was left with him screaming for another hour or so. By morning he was so tuckered that he actually slept right through an ultrasound ... what a relief ... they were able to get much more done that way and spent lots of time looking at detail. It was decided his bowels were not obstructed and so he was sent to pediactrics for them to tackle the case.

Throughout the day he slowly mellowed and stopped screaming so much. And so we spent the next few days in hospital with hardly anything being done. His stomach became distended the 2nd day and no change to his liver and spleen. Ultrasound showed the liver is only mildly large/inflamed, but the spleen definitely is. Those of you who know James also know his eating problems. This has all been brought into the puzzle as well. Doctors are now working to see if there is any connection to all that has happened.

Where we stand now - there are three basic area doctors are looking at:
James has been classified as failure to thrive. He had lost weight last month with a cold/ear infection and has never gained back up to where he was. In recent days he continues to lose. When looking at growth they review three factors ... weight, height and head circumferance. With both his weight and height he has dropped out of the percentile that he should be in. He has maintained his head circumferance. The last is a good sign in the situation. Your body lets everything else suffer so your head can keep up, so in that regard there is not something genetic that's causing him not to grow as his head is trying to keep up. We are now working with a dietician and occupational therapist to see if we can get him to gain weight and learn to eat. The doctors are trying to see if medically speaking there is a reason for his refusal to eat at times (most of the time).

The second thing they are looking at is viral infections. We continue to wait for the more detailed blood work to come back. Most of the initial blood work came back okay. His white blood cell count was low. Normally with infection it becomes high, although they do see at times that it drops low. Further blood work results will help with the failure to thrive situation as well as the viral infections. They are looking to see if his body knows how to properly use the food that it receives. One test has come back with regards to carbohydrates and that is fine. We are waiting for the other tests in this regard. They are also waiting for more detailed viral tests, such as mono (uncommon, but not impossible in children so young) ... and I can't remember the names of the others they lists. Blood work will also determine if he has Celiac Disease (body can't process wheat and gluten). These results will not be in until later next week. If viral this could all just go away as quickly as it came and we could possibly never know what happened.

The last thing they are looking at is cancers (such as leukemia) which are in the lymph nodes. Because his nodes as well as his liver and spleen are swollen/inflammed they feel they should look into this as well. Not all his symptoms lean towards this, but they don't lean away from it either, so they need to determine if this is an issue.

In short this is what we're looking at. This coming week he will need to go for a CT Scan to have a closer look at his body, see if there's anything more then what they saw on the ultrasound. His will also have to go for a biopsy of his lymph nodes. We had a choice whether to stay in hospital or to go home. In hospital James has basically remained stable. His stomach remains distended and no change in the liver and spleen, but he has perked up and is playing and more himself (no more screaming or pain that we can tell). He refuses to eat (nothing too unusual), and isn't always drinking well. He has thrown up again, but only once. He has never had any fever, but has lost a bit of weight. We decided that as long as it made no difference in the time it would take to have his tests done we would go home. Normally it would take weeks/months to get the tests done, but they will be done next week. They also advised that his IV was going to have to come out regardless because they only last about 4 days (he'll need them put back in for the surgery/biopsy). So we felt that the best place for both of us was home, where there is structure and we can actually get some real sleep. We also made sure that before we left we would not have to go thru a long ordeal of Emerg again, but they advised that we would be able to skip that process since we had just been discharged and gave us the info for this. This leaves me a bit more comfortable, as my biggest worry is not knowing what do as there are so many things going on at once.

Starting next week James will also be under HomeCare. Which means a dietician and occupational therapist will be coming to the home to see if we can make any progress on his eating. We also have to switch him from normal formula to a high calorie formula. Our first goal is to get his weight up, then we'll focus on teaching him the proper way to get his nutrition. The occupational therapist also makes sure that he is functioning well in other areas, but she advised in the hospital that from the little bit she saw he is doing just fine in other areas.

So that's about the sum of it right now ... I probably forgot something important, but there's so much going on I can't seem to get it straight half the time ... hopefully sleep will help clear the mind!! :) Right now we're glad to see that James in most aspects is more himself. We're extremely happy to be home and I'm off to my nice comfy bed now for much need sleep!!!!

We thank all of you for your prayers, concerns and offers thus far and ask that you continue to remember us. We pray the Lord will grant all things well in due time, but know that his plan and purpose is higher then ours.