Appointment Update

Yesterday we went for The Princess' hematology and ENT appointments.

We received great news at hematology. Her platelets are still up, 94,000! The doc said that since it has been 6 weeks since the last IVIG treatment The Princess is probably making platelets on her own.

We have heard this before, and then 2 weeks later her platelets dropped. I am trying to hold out a little hope this tme.

The doc also said that she really feels this is just ITP and she does not see a need for a bone marrow biopsy at all. That was also great news.

We go back on the 15th, or sooner if needed.

The ENT agreed with me that a second set of ear tubes would be beneficial. The left ear, ehich has no tube currently, is filled with fluid. We will also have her adenoids removed. This is commonly done when a second set of tubes is needed. I was told the scheduler would call me.

To my surprise, I got the call this morning. They have an opening tomorrow for the surgery. Since her platelets are up today, I took it.

So, she will go in tomorrow morning to get all this done. And hopefully she will feel great by Friday for her birthday. Maybe she will even start to sleep through the night!

I can hope...


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

The longest day of my life so far...

I have had plenty of long days in my life. But nothing like today!

We started with The Princess' hematology appointment. Some good news there, sort of. Her platelets were down from the 67,000 we had last week. 25,000 today. This is of course very low, but not low enough to warrant a treatment. We will go back next Wednesday and will be prepared to stay for treatment if platelets continue to drop.

Then we went to the pediatrician. This was not originally on my plan for today, but The Princess woke up with a terrible cough at 2am. Very croupy sounding. Her inhalers seemed to help after a while and she went back to sleep around 4am. She kept saying "my ear hurts" and "my don't feel good".

The ears looked fine to the pediatrician, but we wondered if there was some sort of pressure she was feeling since she continually complains of ear pain, even with no infection. The pedi ordered a CT scan of the sinuses, STAT.

I called the lab and got an appointment for a little over an hour later. Just enough time to grab some lunch before the scan.

The kids and I enjoyed a picnic lunch in the back of our van. They thought it was cool to be in the van and out of their car seats.

Then we went for the CT scan. The Princess was SCARED. Poor thing. I had to stand above her and try to hold her head still while they scanned. She cried. Luckily, she held still enough they got what they needed. We would have results before the end of the day.

We got back in the van and I told the kids it would be a good time for a nap while we drove back down to the children's hospital for the pulmonology appointments. The Superhero was fast asleep. The Princess kept herself awake coughing her poor little head off.

I drove around extra to waste time and let The Superhero sleep. I ended up pulling over at one point to do The Princess' inhalers. She just can't seem to quick coughing. After some wasted time we headed to the appointment. Both kids had pulm. appointments. The Princess had a follow up for her asthma and The Superhero had his first appointment for a croup evaluation. He has had croup WAY too many times this year.

The appointment went well for both kids. As well as can be expected I guess. The Princess is starting steroids tonight for her "croupy" cough. She seriously can't stop coughing! She has barely stopped coughing for more than a minute since mid-day today. Crazy.

And The Superhero officially has asthma as well. He actually thinks the inhalers are cool, for now. We will follow up for both kids in November.

The doc was concerned that The Princess did not pass her swallow study again. She is going to schedule a bronchoscopy to see if something more serious is going on. This will be scheduled soon.

After that appointment, we headed home. Finally. I was/am wiped out!

I got things ready to make dinner when I got home. Then I got the call from the peds office. The CT results were in and The Princess officially has a really bad sinus infection. Antibiotics for the next 5 days, off 5 days, on 5 days. And a re-check of the CT scan in a month.

So, here we are, $150 in copays and $100 in rx's later.

So thankful today is almost over. Now hoping for better sleep tonight than last night.


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

No news is ... no news.

Just wanted to update you all really quick.

We took The Princess to her hematology and rheumatology appointments on Thursday.

I am SO thankful that Wendy mentioned having ANY lab work done with the same poke. The Princess woke up saying "No poke me!". When we went into our exam room at the hematology appointment I asked if they could talk with Rheumatology to see what labs they might want. They agreed that one poke would be best for her, and took care of getting the orders faxed over from the other building. So, we had ONE poke with FIVE vials of blood.

And thankfully, her platelets are UP still from the last round of IVIG. Her count was 127,000. We are hoping they stay up for a long while this time around. She follows up there again on the 30th of this month.

Then we wasted the day doing some shopping and having lunch with my mom. Then we rushed back to the children's hospital for the Rheuma appointment.

Part of the lab work requested earlier in the morning was to have The Princess pee in a cup. Yeah, that didn't happen. I tried and tried and tried. She wanted NOTHING to do with the darn cup. And at one point I had a very small amount collected and she decided to hold the cup herself. I thought this would be good and maybe she would actually cooperate. Nope. She dumped the little bit I had in the cup. I am sure if they still decide they want to run a urine sample we will try again, or just cath her!

Anyway, back to the appointment... The doctor came in and we went over The Princess' entire medical history. With a positive ANA screening, which was the test we did at the peds office, there is a chance she will develop Lupus. However, some people (I think she said 30%) test positive for the ANA test and never develop Lupus. Since we have other autoimmunity in the family (The Superhero), she will want to follow the Princess about every 6 months regardless of how the rest of the tests come out.

We are still waiting for the rest of the lab results. I am not even sure what tests she ran, but we will know more this week. She said we should have the results by Monday.

If all tests come back ok, then we will assume that for now The Princess does not have Lupus. If any of the tests come back positive, I am not sure what we do next exactly since I don't know what she tested for.

If The Princess does in fact have Lupus at this time, we would start a steroid treatment. The doctor is REALLY hoping we don't have to do this since the Princess is SO young. We are hoping the same.

Anyway, that is the update for today. No news is no news this time around.

I will do my best to update as soon as I get the results this week.


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Big day tomorrow...

After my post yesterday, and lots of thinking and worrying I decided to try to get The Princess in with the Rheumatologist sooner if they had any cancellations.

I was fortunate that when I called this morning they were able to get her in tomorrow afternoon at 2pm.

So, now we have Hematology at 10am and Rheumatology at 2pm. With some shopping at the mall in between. :-)

I will update when we know more.

For now, I leave you with this sweet, sweet face.

I hate that she has to go through any more medical anything, but she does it all like it is no big deal to her.

Amazing.

(another huge THANK YOU to the Small Acts of Kindness quilt group at New Life Community Church, she is in LOVE and carries her quilt every where, even when it is 100+ degrees outside)


***And a HUGE thank you to everyone who has commented on the blog or on FB. I appreciate all the thoughts and prayers being sent for The Princess and our family. You all mean more to me than you could possibly know. ***

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*