Today we went up to Primary Children's for Justin's hematology appointment. His ANC was 0.4. The doctor's are going to have us continue with weekly blood draws and come up again in 2 months. They are leaning towards the diagnosis of Benign Neutropenia of Childhood. (For the record, I diagnosed him myself with this about 3 months ago :) They are still not 100% sure, but it is currently the only conclusion that makes any sense. This is actually best case scenario (knock on wood!) If it is BNC then he should grow out of it sometime in the next few years.

Yesterday's Number was 0.4

Thursday and Monday Numbers

Thursday: 0.4

Monday: 0.1

Hematology called and said that we didn't need to continue with twice weekly blood draws--not because he's getting better (obviously :) but because they felt they had the data they needed. So we are back to once weekly blood draws.

That said, Justin is doing great. He is healthy and turns 6 months old today! I took him in yesterday for his last Synegis shot (RSV preventative shot). He weighed 14 lb. 6 oz. Not bad for a little guy who started off at 3 lb. 7 oz!

We are continuing to pray that he remains healthy. Who needs neutrophils anyway right?

Monday Number

Todays number is 0.4

This weeks numbers:

Monday: 0.5

Thursday: 0.7

Definitely better!! 0.5 is the actual cutoff for Neutropenia, so for at least this week we are "better!"

The Dr. called today, and they are moving us to twice weekly blood draws to see if there is any pattern to J's neutrophil count. This is a bummer, I was really liking the 2 times per month much better! He continues to be healthy right now though, which we're very excited about!

We took J to his hematology appointment today. Not much new information. Unfortunately when they drew his blood, his neutrophil level was at 0.0 We are as confused as they, but right now he is not sick...so I guess we'll take it!

J's neutrophil number today was 0.4. Not great, but we've had worse, and he's not sick right now which is really what matters most!

Quick update--J is doing great! We have been home now for almost 2 weeks (knock on wood) and he is a very healthy, happy baby. We will go in again on Monday for a heel poke, and hopefully his neutrophil number will still be high. Definitely going in the right direction!

Great News! On Wednesday they tested J for HIV. I didn't post it because I couldn't deal with it. Today we got the results and they are negative. Hurray!!!

Went to our Hematology appointment today. J's Neutrophil number was 1.9 which is awesome!! They still have some concerns, and did some more testing. The Dr. said that "only time would tell", and then said by time he means 2 weeks. I'll keep posting if we hear any more results. Oh, and little chunky monkey is up to 12.2 lb!

Well, we're happy to report that Justin has had a great day at home. He even slept through the night! He has a hematology appointment on Wed. so we will see if there have been any results from the testing. Other than that, he is enjoying living in his obsessively sanitized home :)

Justin made it home today :) No test results yet to report, but we will go in for a follow-up appointment on Wednesday. Right now Justin is feeling much better though, and is grateful that he won't be getting poked at least for a few days!

Justin is doing good tonight. It turns out that he did not have a gram positive bacteria infection, but had Rhinovirus. We are hopeful that tomorrow we can bring him home.

IV team just arrived to place J's 5th IV because the other ones keep getting clogged also 5th poke of the day

Seriously?!! Just went out to the van and there was a note on it that said "sorry I slammed in the back of your van" at least they left a note...

They are going to do quite a bit more blood work tonight, then will do a transfusion to replace all they take

J is doing good today, but we are not going to be discharged yet. The docs want to do some more blood tests. His neutrofil count is up to 0.4

J is doing much better. His numbers are pretty normal, and he hasn't had a fever since 3am. As for the bone marrow draw, well, still not a lot to go on. They found that his neutrofils are being made by the bone marrow, but that they are not maturing. We're not sure if that's because he has had some sort of infection and his body is in the process of making new cells that haven't yet matured, or if they cannot mature. They are going to do a blood draw in the morning that will be sent to Cincinnatti for further testing, and then they are talking about maybe doing another bone marrow draw in a month or 2.

He might be able to come home in a day or 2 if his fever will stay down for 24 hours and his ANC (Absolute Neutrofil Count) will go up. It did go up today to 0.2 which is still abysmal, but better than the 0.0 it was!

J had a pretty good night. His fever rose again around 102, but has come down since. We still have not heard anything about the bone marrow draw. We're hoping to get some answers today!

Justin is resting comfortably tonight, and we are hopeful he will continue to feel better. His temp is still hanging out around 101, and we're not to sure what that is about. We did not receive any results yet from his bone marrow draw. He is definitely in pain from where they did the sample, but the oxycodone seems to be helping with that.

Bone marrow draw went alright. No results yet. Cant type in the main body of this, so the updates will just be titles :) J is resting right now.

Two nights ago J had a fever of 101.7. We tried to give him a little tylenol and see if that would do the trick. He had a rough night, and we knew in the morning that it was time for a trip to the hospital--(our 4th in 3 months.) When we arrived at the hospital his temp was 102.9 and he was struggling a little bit to breathe.

He has a condition called Neutropenia which means that his little body is not making enough of the bacteria fighting neutrofil--a type of white blood cell. In fact, as of yesterday his body had 0.0 neutrofils. Not good. He had a lumbar puncture (spinal tap) and many more tests. He was also put on antibiotics as a preventive measure to in case the infection was bacterial. We were finally moved up to the immunocomprised ward around 2:30pm.

J's heartrate remained around 205-220 until about 8pm. His oxygen saturation levels fluxuated, but stayed mainly in the 90's which is good. It was determined that he has a gram positive bacterial infection, which requires a different type of antibiotic than was being given. His temperature remained around 102.9 even with tylenol. He was one toasty baby!

Today they have decided that it has finally become necessary to do a bone marrow draw, to see if they can determine the cause of the neutropenia. I will keep things updated today as results come in.

Love,

Linds

Dear Friends and Family,

We are so grateful to have so many who care for our family and our sweet baby J. I've decided to keep this blog as a journal of what goes on, and to help keep you all updated.