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.*

Where do I begin?

Sometimes I don't even know which way is up any more. Our crazy normal continues around here. The kids have both been sick off and on for the past 4 weeks or so. We all currently have a sinus/ chest congestion. We all sound like we have bronchitis/ croup going on.

The Princess just really started sounding bad last night/ this morning. She woke up struggling to breathe, super seal sounding, and wheezy. I called and scheduled an appointment with the pediatrician.

Before we left I remembered that the hematologist had said she did not want The Princess put on steroids if we could help it. At the time she said it, I didn't ask why. It wasn't relevant at the time. I am thankful I remembered this today though. typically, for croup, we would put The Princess on steroids to help her.

So, I called the hematology nurse and left a message. She called me back on our way to the pediatrician. We discussed that of course if The Princess really needed the steroids to help her breathing, we would do it. But, if we can avoid them, we should.

Since The Princess has has ITP for almost 6 months, we have to start looking at other possible causes of the low platelets. It could still be just a low platelet problem, ITP. Or there could be a problem with her bone marrow. Even with no other symptoms.

So, we will be discussing a bone marrow biopsy with them at her appointment next week. If we give her steroids now, it could affect her bone marrow and give us false results.

The one plus of this, if there is one, is that we should be able to combine and do both the bone marrow biopsy and the ear tube/adnoidectomy/sinus cleanse all at the same time.

I will update after both appointments on Tuesday. Until then, please pray for calm nerves around here. I am trying not to stress about any of this and to give it all to God. It will all be ok, one way or another.

*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.*

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.*