We came to the hospital yesterday afternoon for Mason to receive his second IVIg treatment. He will be getting them every 30 days while on the transplant list, to help keep his antibody levels down. The treatment didn't get started until 11 pm, because they had a dosage issue that caused a delay. By mistake his IVIg dosage was ordered for a 22 kilo child, but he weighed in at 22.2 lbs which is about 10 kilos. Big difference! Then the treatment takes 12+ hours. Mason has been a brave boy for this sleepover, but his least favorite part is his IV! That is why he's so sad in the picture below.
We do get to leave this afternoon and return to our "home away from home". Thankfully, it hasn't turned into a 4 day IVIg treatment stay like last month. Mason is already so excited to hear me talk with the nurses about going "bye-bye". I keep telling him he needs to get used to these sleep-over's though, because when his new heart comes we will have a VERY long sleep-over!Next Thursday, April 1st, Mason will have a heart cath to check his heart function and pressures. It is routine to get one every 6 months while on the transplant list (with many many more after transplant). His last one was in September. That awful September 3rd that I wish I could forget, when we were told we only had months left with our Mason! But, now we are in a new chapter on a journey with renewed HOPE. I ask you to pray with our family that all will go well with his heart cath and of course that his NEW SPECIAL HEART will come SOON.
Until I have more news.......thank you for all your prayers and for the donated flight miles!
Here are a few pictures of our visit with Daddy two weekends ago:
Mark and Mason over looking Half Moon Bay
Mark, Mason, & I at the famous Maverick Surf Shop
Exhausted Mason after our weekend with Daddy
Here below is also a very special picture. One of my "Heart Mom" friends wrote Mason's name in the sand at a beautiful beach while on vacation in Mexico, to let us know Mason was being prayed for all the way in Mexico. Thank you Jess for thinking of us and for e-mailing me the picture!
Until I have more news.......thank you for all your prayers and for the donated flight miles!
8 comments:
That sad face is breaking my heart, :( but the pics with Daddy helped.
Mason remains on my minds,in my heart and in my continous prayers.
That sad face gets to you. It reminds me of the many hospital stays we've had with Logan. All they want is to go home and play...not be stuck in the hospital.
Praying for you guys!
I love the pictures!
Stef
www.whenlifehandsyouabrokenheart.blogspot.com
Ah, that first picture melts my heart. Those sleepovers are never fun! We'll be praying for a perfect cath on the 1st! I loved our cath experience at LPCH, it was fantastic!! Hopefully you have the same luck. We are SO excited to see you in just a month. How times flies!!
Sweet pics with Mason and Daddy!
Thanks for keeping us posted. I've been wondering about him :) Take care.
Mindi and Libbi
Mason, I don't like IV's either! You're such a good boy for not pulling it out! Keep being tough little man!
How stressful! But I am glad that they have treatments that can help keep him healthier. Keeping Mason in our prayers. Hang in there!
What a brave little guy. I was also a patient at LPCH and live in the Bay Area. I had restrictive cardiomyopathy, but got a heart transplant in November 2009. It was actually not that bad, god got me through the whole thing. Who is your doctor at LPCH, I had Rosenfield.
Oh Summer you are so strong!! We pray for Mason and you! That picture of Mason and his IV is just so sad. I just want to come over there to Cali and give him a hug. We will keep praying for that heart! We love you guys!
Scott, Amy and Carter
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