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.*

Update on The Princess

Well, if you read THIS post, then you know that we went in to get tubes for The Princess. I am happy to report that the surgery went well and she is doing mostly better now.

The doctor said her left ear was REALLY inflamed and full of fluid (which he drained). She did great going off to the nurse before the surgery, only cried for a minute.

She had a hard time waking up after wards. She cried a lot and was thrashing herself around. I went in and held her in recovery and once she opened her eyes we got her to drink a juice. Then they rushed us out (that is how out-patient works around here).

They seem to kick you out pretty quick. She was still pretty fussy so I sat in the back of my dad's truck with her. I had her eating snacks within a few minutes and she was a much happier little Princess.

My mom took The Superhero to school and picked him up. Then she kept him until the afternoon so I could spend the day with The Princess.

The Princess and I watched a Strawberry Shortcake movie (her new favorite) and then we took a 2 1/2 hour nap around 11am. It was SO nice to sleep! She has not napped that well in a LONG time.

Since the surgery, she has started going to sleep easier. She is still not sleeping well, and is in bed with me every night.

She has also started talking and demanding things in her sleep. The other night she insisted we get her crocs for her (either that or socks). Before we even had a chance to get them, she was fast asleep. Last night she insisted on having a hair bow. I told her I was going to get one, and she went back to sleep while I pretended I was getting up. Silly Princess!

And on another Princess note, we went to the GI doctor yesterday. I can honestly say we talked about EVERYTHING that has ever gone in and come out of The Princess. There was more poop talk than I could have imagined.

But, the doc has determined that we definitely need to do an Endoscopy (upper) and something else in the lower area too. She named several reasons that The Princess could be feeling the way she has for so long.

I have to go back to giving her Gluten for the next couple of weeks and the procedure will be scheduled for 2-3 weeks from now.

I will keep you all posted on when this is scheduled and how it goes. I just want answers. She needs to feel better.

Thank you all for your thoughts and prayers. And, I will leave you with some pictures from her surgery day. Enjoy!

In Pompa's truck on the drive over, 5:30am.

She REFUSED to wear their gown, she chose to be naked instead (just a diaper).



Being super cute.


"Reading" a book with Pompa. (really watching the movie instead)



Eating a snack on the way home.

Ear Update

I have been writing my blog post update post in my head for days! I have not had time to get it typed up. BUT I did not want to wait to update you all on The Princess' ears!

She is MISERABLE!

We took her to the doctor last Wednesday and started antibiotics. Went back on Friday because she was not improving AT ALL. The doctor on Friday (we had been seeing the Nurse Prac. the other days) could not believe how bad her left ear was! She insisted we get into the ENT that day!

So she called and got us an appointment. We went from one docs office, quick drive through McD's and off to the ENT.

He said her ear was bad, but did not require an emergency surgery the same day. We would schedule it for Tuesday.

With Tuesday being surgery day, that meant NO motrin for 3 days before surgery! That mean ONE CRANKY PRINCESS ALL WEEKEND LONG.

She has been miserable and it gets worse by the day.

Today was the first time at daycare that they told me she cried at nap time. The director had to come and hold her until she fell asleep. :-(

Surgery is scheduled for 7:30am tomorrow. So, if you could all say a little prayer for my Princess tonight through surgery time, I would appreciate it.

I know this surgery is "no big deal", but she still has to be put under. And there are always risks. But, I know she will feel a TON better with tubes!

I will update again tomorrow if I can.

Vacation and The Princess Updates and Pictures

(Day 30 of NaBloPoMo)

I am finally taking some time to update you all on our trip! Enjoy!

• I first want to say THANKS for reading along this month as I posted every.single.day this month. It was easier in the beginning of the month, but, these last few days have been killer to get my post in!

• The Princess did great on the 2 flights to IN. She did not sleep much, just a little on the first flight. She was in a great mood the rest of the time!

• The Princess DID NOT sleep well while we were gone, AT ALL. She had psychotic melt downs where we could not get her to calm down long enough to listen to us. It was HORRIBLE. But, we survived.

• We enjoyed spending time with all of our family there. We went to attend my cousin's daughter's first birthday party. Little Miss L. was adorable for her party AND we got to be there for my cousin's marriage proposal from her boyfriend of almost 3 years. This made Little Miss L.'s 1st Bday that much more special.

• We got to meet up with Hallie and The Princess from The Princess and The Pump (she posted about it here). This was an AWESOME part of our trip! She picked up The Princess and myself to go to lunch. We went to Red Robin, let the Princesses play at the park, and we did a little window shopping. Then we headed back to my Aunt's house to hang out for a bit. You can read more about the visit on Hallie's blog, and see my pics from our time together, below.

• The Princess did great on our first flight on the trip home. She actually slept the whole 2 hours. THEN the second leg of the trip...UGH!...The plane was nice and had video monitors for every seat. I thought GREAT we can watch a movie and the flight time will go faster! NOT! I bought ($6) Toy Story 3 and then found out that our headset connection DID NOT WORK! So, The Princess watched with no sound for a while. Then she SCREAMED for about the last 45 minutes of the flight! It was horrible!

If you remember a few weeks ago The Princess was sick. She had an ear infection about 3 weeks ago. We followed up the next week and they thought it looked like the ears were clearing up fine. I MEANT to take her in again before our trip to double check, but figured they were looking better and she was ok. Boy was I wrong! I ended up taking her to the doc yesterday after she has had too many rough nights of sleep and has been cranky. EAR INFECTION in both ears, AGAIN! One ear looked so bad the doc said it was RED and bulging out! Lots of fluid.

Since The Princess seems to be getting LOTS of ear infections, we are being sent to see an ENT about tubes. I scheduled the appointment for next week. We put her on antibiotics AGAIN. She is becoming resistant to them since she does not have a lot of options due to her penicillin and cephalosporin allergies.

So, we will see the ENT on Wednesday and the GI doctor about my celiac suspicions on Thursday. I will update after both appointments.

And, THANK YOU all again for sticking out the first NaBloPoMo I have done! I am not sure I can do it again, though I am thinking of trying for November. We will see!

Enjoy the picture collages below from our trip!

The flight to IN.

 

Random.

Little Miss L. on her 1st Birthday.

Random.

Meet up with Hallie and The Princess.