LIFE: MY STORY

Sunday, November 10, 2013

Immunology Visit

This was the first time we have EVER seen an Immunologist for Haven.

I wasn't sure what this meeting was going to be about or how helpful it would be but I have been desperately trying to figure out why Haven's immune system won't kick back in. We've been doing this for 6 years now and she's a little tired of it and we just don't know how low she can go before it's bad.

The Immunologist was super great. Haven really likes her. She was very personable and I think Haven loved that she was pregnant too. She already knew about Haven from hearing stories about her over a year ago. Which was amazing. So she also knew about ROHHAD. This is AWESOME to a mother with a ROHHAD child because it's hard to find anyone that has heard of it or even looks it up before you enter the office.

She was a bit shocked I would say at Haven's IVIG dose. She thought it was rather high. Which explains why Haven has migraines now and especially for two days after IVIG. She wants to lower the dose and is going to talk to Oncology.

We also discussed with her moving to the new hospital because they do her labs and infusions on Saturdays which works out better with my schedule and having to work to feed and pay for medical bills! She is going to discuss with Oncology the possibility of taking over Haven as a patient. Honestly we don't need to see Oncology - we'll never have doctors like we did at Hopkins - and we only see her every 12 weeks for about 15 minutes. They don't do anything on weekends and she doesn't even have a bed to sleep in for the 6 hour treatment. Keeping fingers crossed and I have to make lots of phone calls when I get back from this trip.

If they do get the approval to lower he dose Haven will go back to every 8 weeks instead of 12 weeks - if this helps headaches then I'm ok with it. She will also only have to do 4 hours of treatment instead of 6 hours. This is awesome! Not to mention through the winter months I would prefer more immune system bump ups than less.

So I should know by Thanksgiving what is going on here. She doesn't have IVIG until December sometime - again I have to check these calendar dates. They seem so far away when you make them and then you leave the country for a month and BAM they are all on top of you!

New Hospital for Labs

After a massive confusion at Haven's "close" hospital to get her lab work and port flushes done we were moved to another hospital. I found out it was all miscommunication but we ended up liking this hospital better anyway.

Instantly Haven was very happy with this hospital and room. This is where they get all their infusions done and now we are looking to change to this hospital from Primary.

She also really liked the nurse because the nurse had a port too. She had an instant connection to this nurse since she had undergone chemo and stuff that Haven has gone through.

We are hoping to move. I take her back on the 16th of November for labs for Immunology and her flush.

Pulmonary Doctor Visit

After my trips I took Haven in to see Pulmonary. We reviewed all of her sleep issues - seems to be the biggest issues she has right now. She has been sleep walking and even coming all the way down the hall to our room looking for us.

I really liked the Pulmonary doctor - he listened to me and he already knew about ROHHAD and it's issues. We'll see if he stays on the good list.

We have a sleep study scheduled for December - had to wait until after my next travel adventure. Then we will meet with him again in January. I'm going to have to find out when that was exactly - I have another trip planned from Central America during that month.

Once we get any results I will let you know!

Shanghai China trip October 2013

I've seen the buildings in Shanghai in TV many times…but to see them in real life is amazing.

Everything is so different from the next building.

This tower amazed me. Made me feel like I was in Epcot or something.

The Hyundai building is such a beautiful color of blue.

Looking down the pier

The other side of the pier is older buildings from different ages of China.

Peace Hotel - Nixon stayed in

War Memorial to the Veterans

The construction and art details are amazing at the war memorial

Beautiful

We went walking around the area and this is a beautiful covered seating area

Cheeseburger steak -- what more could I ask for.

Cute little crab cakes. If I ate crab it would be better but these were so cute.

Mayor of Shanghai

Went shopping in Temple Square

Tea House - can't even explain how beautiful these buildings are

The Temple

View at night from the hotel. I stayed at the Galaxy Hotel. I really liked it and the price was amazing. I will definitely stay here from now on in Shanghai.