Where have I been? An update...

Hello Blogging World!

Things have been nothing but CrAzY around here, as usual. I guess that is our normal now.

Last time I posted about The Princess she had a day of an IVIG treatment prior to her bronchoscopy.

And I realized today when my dear friend, Chasiti, posted on my FB wall that she wanted an update on The Princess, that I hadn't updated anyone about anything. I have been in a funk of sorts with everything going on.

Well, here is the update...

• We had her bronchoscopy on 9/15. She had her platelets checked that morning and they were above 100,000 and she was cleared for surgery. The bronchoscopy was done and over within minutes. The pulmonologist said she had the most beautiful airways you could imagine. We discussed the swallowing disorder and she, along with the other pulm. docs, are investigating the diagnoses of dysphagia. She said that more and more kids are being diagnosed with it from their radiology department that they are wondering if they are over-diagnosing. We discussed transitioning The Princess to regular liquids over time. I took it upon myself once we were home to try The Princess with plain water. She has been doing GREAT since. She originially was coughing a lot when drinking. Now I am wondering if her asthma was out of control back then and that is what caused the coughing and not her swallowing at all. Anyway, for now, I am doing plain water mostly and she is in Heaven.

• We have been back to the dermatologist and the rash on her face was not clearing up. She started her on 2 months of Zythromax, to be taken 3x per week. Her face is clear now and I am hoping it stays that way.

• The Princess was diagnosed with a Sinus infection back in August.  After 2 rounds of antibiotics I took her back to the pedi, along with The Superhero. They were both very sinusy (is that a word?) and had goopy eyes, etc. We decided they both had sinus infections and they were both put on one month of antibiotics. The Princess can only have Zythromax, so we upped the dose this time. 

• We followed up with the ENT for The Princess last week due to her ear tubes. It has been a year since they were put in.The left one fell out a while ago and was stuck in the wax. The ENT was able to get it out. The right one is still in place for now. We also discussed The Princess' sinus infection. I am concerned that we are putting her on antibiotics for such a long period, and there is only ONE she can even have right now. I am very worried about the possibility of her developing antibiotic resistance. I have even contemplated pulling both of my kids out of school and keeping them in a bubble at our house. We stayed in most of last winter due to illnesses and it seemed to help. But, that is not as realistic this year. I am busy with work and can't have both kids home with me all the time. Anyway, back to the ENT. He said to keep her going on the antibiotics we were doing for now and to follow up with him in a month. He mentioned the possibility of surgery for her sinuses. We have an appointment on the 31st of October.

• In the meantime, I looked up other ENT's. Not because I don't like ours, I do, but he does not do any sort of surgeries at the children's hospital. And after her ear tubes were put in at a surgery center, and they kick you out the door as if she was an adult, I decided I wanted to keep any surgeries that are required at the children's hospital if we can help it. So, I found a ped ENT who does surgeries at PCH, and he has an office about 3 miles from my house as well. PERFECT. I called yesterday and they were able to get us in TODAY. He looked at her CAT scan from the end of August and agreed she had a sinus infection. He said he would not do surgery for that alone. BUT her left ear, the one with no tube currently, was filled with fluid. He said a second set of tubes was probably not out of the question. And if we put new tubes in, we will take out her adenoids and clean out her sinuses while we are in there. We go back in 2 weeks on the 26th to see how her ear looks and make a decision.

So, that is where we are at right now. I am thinking surgery for the ears/adenoids/sinuses will be happening. And that means a platelet check and possible IVIG beforehand to make sure she doesn't bleed all over. Fun times in our house!

I feel like the "If you give a mouse a cookie..." series right now. :-) (Those of you with small children HAVE to know what this book is)

At least she is still pretty happy and growing up WAY too fast...

*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.*

Illness Update

Well, I am feeling better today. It was definitely a rough week of achiness (just made that word up). I am still coughing some, but not too bad.

I took both kids to the doctor yesterday. The Superhero needed a follow up from his hospital visit and was not complaining of ear pain. The Princess has been breaking out in hives and is now sounding croupy.

The Princess seemed ok at the doctor's office, of course. I had the doctor write the rx for steroids in case the croupy cough got worse. Which of course it did last night while we were sleeping, that is how croup works. :-) She started steroids today and should hopefully be better soon. The hives could just be related to the virus she has, we are keeping an eye on them/her for now.

The Superhero has yet another ear infection. I asked the doctor why he has had so many ear infections and bouts with croup lately. 4 ear infections and 2 times with croup since Thanksgiving seems like A LOT to me. She agreed and said it could be a sinus infection that just one round of antibiotics would not be clearing up, which is why everything comes back.

I took him over for an x-ray of his sinuses and waited for the call. The nurse called me yesterday afternoon and indeed, he has a bi-lateral sinus infection (both sides). He will be on antibiotics 2x per day for 30 DAYS. And then we will repeat the x-ray to see if it has cleared up.

I am hoping this will be the end of the illness string at our house. As much as I hate him being sick and needing antibiotics for 30 days, at least we CAN treat it and it should clear up this time.


*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.*