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.*

Tomorrow's the day...

The Princess has two appointments on Thursday and The Superhero has one appointment as well.

We go down to the children's hospital bright and early for her modified barium study. Then we have her hematology appointment. Then in the afternoon, The Superhero has a pulm. appointment.

We are hoping and praying for a few things...

1) The Princess to have outgrown this swallowing disorder. I am tired of mixing gel into her liquids. And I am sure she is tired of drinking them.

2) Higher platelet counts. She is still bruised, though not nearly as much as last week. So I have hope that they have gone up enough to avoid an IVIG treatment. I really hate putting her through that.

3) Praying for answers as to why The Superhero has had croup so many times. Is it asthma? And should we be doing anything different?

I will update FB throughout the day and the blog either in the evening or by Friday morning.

Thank you all for your thoughts and prayers.


*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.*

Another illness update

I wish I could be posting that we ALL feel 100% better, but, we are not.

I went to the doctor on Monday and was told I had bronchitis. Antibiotics started and I definitely am feeling better. not completely, but better for sure.

The Superhero is still on his antibiotics for the sinus infection. He is about 7 days in of the 30 day regimen.

The Princess, well, she is NOT better. Not completely anyway. I took her to the doctor on Monday and she was put on antibiotics for bronchitis. We also started up her breathing treatments again, every 4 hours, around the clock.

She was not getting enough better by yesterday (Wednesday) so I called and made her an appointment for this morning to get back in with the doctor. I was thinking she might have pneumonia, but I wasn't sure. She seemed to be breathing more shallow than normal and taking more breaths than normal. I had a HARD time sleeping last night. She was in bed with me and I just listened to her breathing all.night.long.

Took her in this morning and her lungs sounded great. I had done her breathing treatment not long before we had gone in. I went ahead and asked for the chest x-ray to ease my mind about the pneumonia. We went over to the radiologist and had her x-ray done. (this is where they place her in this barbaric looking contraption I had never seen prior to the last few x-rays she has had done, it works well at holding her still though)

We came home so she could eat lunch and nap. Then I got the call. It was our awesome nurse from the peds office calling to let me know the pneumonia was NEGATIVE. Which is GREAT news.

Then there was a BUT. Isn't there always?

BUT, she does have asthma. Keep the breathing treatments up every 4 hours. (paraphrased, of course)

She may be able to come off them for a while when she is feeling better. We will just have to see how she does. The air quality is POOR here in AZ which does NOT help.

Sigh.

So, now we have asthma to deal with and worry about. It had been mentioned previously since she has had issues in the past, but usually they don't actually "say" it until they are a little older.

Never a dull moment in the house with The Superhero and The Princess.


*Disclaimer: I am a mom of a T1 Diabetic child. 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.*