Sunday, March 23, 2008

Quick update on Joshua

Well, it is already 10 pm and I have got to be up with the sun to take Evan to physical therapy in the morning, so unfortunately, I will not be able to publish my backlog of blogs this evening, but I did want to pop in quickly and give everyone an update on Joshua.

I wish I could report that all is well and that he is happy and healthy once again, but unfortunately, that is not the case. As Richard posted, we were released from the hospital around noon on March 11th. By late afternoon he had spiked a fever again. I took him to see his pediatrician first thing the next morning and we rehashed the entire saga from the very beginning. We poured over his chart, looked at every test result multiple times and talked about all of the different possibilities. We left the office with orders for more blood work and to call the doctor if his fever spiked over 101. By that evening he had been fever-free for 24 hours. He continued to be fever-free for almost a week. . .when suddenly he began spiking fevers again on Monday afternoon. That same day we received the results from the blood work that had been done the previous week. The results showed that his t-cell count (the white cells that make up your immune system) was still low (we ran the same test in the hospital). While they had increased slightly from his numbers in the hospital, they were still low enough that our pediatrician decided that we should have an official consult with the Infectious Disease doctor that we had worked with at the hospital (currently scheduled for April 1st). What exactly does having a low t-cell count mean? Well, unfortunately, all it really tells us is that his immune system is compromised and that something is, in fact, going on.

His fevers continued on Tuesday and Wednesday and, after speaking with the nurse who then spoke with the doctor, we were told to call if the fevers continued into Thursday. Of course, he woke up with a fever on Thursday, so we received orders to get more blood drawn and have an xray of the sinuses done. Late Thursday afternoon we received a call from the nurse that his xray showed that he did, in fact, have a mild sinus infection and so they immediately called in a prescription of antibiotics which we were to start that night, with orders to call them if, after 4 days, he was still having fevers. Well, we are on day 4 of the antibiotics and, unfortunately, his fevers seem to be heading up (103.6 at bedtime this evening) rather than out, so it looks like we will be making that phone call in the morning.

We have already done xrays, ultrasounds, blood tests, viral panels, respiratory panels, urine tests, CT scans and bone scans which all yielded very little information on what could be causing these persistent fevers, so our next step will likely be looking at his heart (one of the few places we have yet to look) and possibly doing a spinal tap (although the doctors seem pretty certain that this is not meningitis, viral or bacterial).

To say that this has been a bit unnerving would be putting it lightly. When this all began almost a month ago, he had RSV and a urinary tract infection and the fevers made sense. But those things went away and the fevers persisted with no explanation. When test after test yielded no answers and the doctors even started to become frustrated, it became a bit overwhelming and scary. When it seemed like his fevers might take their leave as mysteriously as they came, I was more than happy to send them on their way without further explanation. Had I known that they would simply be taking a brief vacation, I might have asked them to stay so that we could get to the bottom of this a bit quicker!

Underneath all of the unknowns, there is one thing that I do know and that is that Josh will be okay. We will all be okay. I have spent a lot of time on my knees praying for answers, praying for peace, praying for the doctors that are presiding over his care, and the spirit has most certainly witnessed to me that all will be well. Will he be miraculously healed? Maybe not. Will it take time to find answers? Most likely. But I have faith that all will be well in the Lord's time and that the answers and the healing will come. We have been blessed with an excellent team of doctors who are very skilled and very proactive and I know that, eventually, we will get to the bottom of this.

We appreciate the thoughts and prayers of all of our family and friends during this difficult time and hope that you all know that those thoughts and prayers are what lift us up and keep us going! Please continue to pray for our sweet boy and for the doctors who are working hard to find out what is causing his illness. We have witnessed many miracles in our lives as the result of prayer and know without a doubt that the Lord hears each and every one!

9 comments:

Amanda said...

Valerie, Thanks for the update and we will praying for your family and for Joshua. Thanks for sharing the pictures of the the cutest little easter bunnies!!

Take care

Michelle said...

Gosh, I hate to ask these questions, but I am going to anyway.

Has he had any seizures at all? Even if he hasnt, with the unexplained fevers, PLEASE ask them to rule out (via MRA) Moya Moya syndrome. It is becoming a well recognized fact that MoyaMoya is much more prevalent in kids with DS. That he had RSV would be an even bigger clue, as it generally follows an upper respiratory illness. MANY docs have never heard of Moya Moya, and if they have it is only in passing. I personally know several children with it, all with DS. Many of the symptoms are heard to see in our kids, and likely even harder in Joshua due to his other disabilities. Please ask your doc today, MM can come on quickly, and MUST be treated immediately. It is very likely not MM, but if it is, there are things that can be done to lessen his chances of further damage from strokes, etc. I really dont mean to scare you, but this is one worth ruling out. Please just ask? And all my prayers..

Shelley said...

Valerie,
We will continue to pray for Joshua. I can't imagine how frustrating it must be to not know what is going on.

Ute said...

I think about you and your family a lot. Something like this is very unnerving, but you have a very good support system thru your wonderful family and the hospital team. I pray for all of you, that they will find the source of this fever and finally can manage it.

IAmDenise said...

Valerie
I will continue to pray for you guys and for Joshua.

Denise
TTC

Charissa said...

Praying for you and Joshua.....I sure enjoyed seeing the pictures. Please keep us all updated!

Nichole said...

Your family and the doctors are in my prayers. I know how extremely helpless you can feel when they don't know what is wrong with your child. We dealt with "fevers of unknown origin" with our daughter over a year ago. They have been gone about a year, but we never knew what caused them. I never thought I would be content with not knowing what was wrong, but I am because the only way we will know, before heaven, is if the fevers return. Thanks for the update.

Katie and Pete said...

Val,

I have been watching your post for an update on Joshua. My thoughts and prayers are with you and your family as you go through this difficult time. Poor little guy - I hope they find out what is wrong quickly. Poor mom, you must be exhausted.

Katie

Christina said...

Praying that you find some answers soon. I can imagine how frustrating and scary the last few weeks have been. The pics of the boys in their bunny ears are adorable!

Christina
RR Group