Ports aren't as easy as they seem!!

This past week has been a LONG LONG WEEK! Thursday July 19 was like any other Thursday. It was the 2nd week that my boys had their ports placed & 2nd infusion. They were still pretty pink because their bodies were not used to them yet and were not fully healed.
We started the morning by putting Emla cream on them and putting their bandages over them and heading to the hospital for their infusions. When we got their they took of their bandages to access their ports and by that time Kingston's port area was very bright red and tender to touch. The port was still accessed and his vitals were good for the next 4 hours.
After the infusion his port was still a bright red color. We left the hospital and about 45 minutes down the road Kingston woke up pulling at his ears, acting uncomfortable. By the time we got home and I got him out of his carseat and realized he was burning up. I got him in the house and took his temperature, it was reading 103.3 under the arm. I got my mom on the phone calling the doctors office as I headed out the door. By the time I got to the pediatricians I had got a text telling me they would see us right away.
We went right in and they took his temperature rectally and it was reading 105.3!! Wowza poor boy just wanted to be held by mamma and didn't want anyone else touching him. I had gave him Tylenol before we left the house and it was still rising.
The doctors office set us up at Wilson Hospital where we headed over there right away. All the doctors were scared that it was a line infection and would have to come right out...
That was just the start to our week long trip in the hospital(s)!!

FIRST Infusion with Ports!

Today is the first time in 4 weeks that the boys got their medicine. They were sick the first week, then vacation the 2nd, and last week they had their ports placed in.
I am so glad that we went the route we did with the ports! Today was such a breeze compared to the last 3 months.
We got there at 8:30 & they were hooked up to their medicine by 9:20! It was such a painless and more enjoyable process than getting ivs!
Everyone in the room had to put masks on, except the boys since they decided they weren't having anything to do with it. She then had to scrub them down and disinfect the area around their ports(under the left arm). She then put a needle that looked like a push pin into the port, which did not hurt since we put on the numbing cream before we left the house. She made sure it was accessed, which it was. Put tape on it and they were good to go. It maybe took 2-3 minutes to do all of that.
The boys were a little off edge because it was something new to them, but I'm sure next week they will realize it wasn't that bad and settle down some more. The hardest part for them was taking off the tape at the end when they were all done. And if that's the most pain they have to endure through this whole process, I think we can all handle that!! :)
Other than that treatment went very. The one nurse today told me that I have two very strong and healthy looking boys, which I am very proud of under the circumstances.

I still have boys on the bioplasma cell salts, and I see a HUGE difference when they take them. With all the traveling we did in the last month the boys didn't get their bioplasma cell salts & boy do I regret it! I saw a lot of storage in their faces. They got sick, which they haven't been since the winter time. I knew I needed to get them back on them religiously like they previously were. So I set my phone for three times a day to have the medicine and within a week their faced were starting to look better. I had family commenting on how good they were looking. Within two weeks of being on the cell salts they are having solid bowel movements, which I've noted in other posts how they've never had them till this medicine.
And now I know it's the cell salts because they haven't had their ELAPRASE, their therapeutic enzyme replacement since I've started this up again.
I always have the nurses asking about it or what I'm doing because they are looking so great! I'm really just glad that I found something that I KNOW HELPS THEM!! :)

Road Trip to Akron Ohio to see Dr. Hertle

Today July 3rd both of the boys had an eye appointment with Dr. Hertle. It has been 8 months since Hunter had eye surgery to correct his nystagmus also known as "dancing eyes" and to adjust his optic nerve to give him a more broader spectrum and to correct his head tilt.
Hunter has not been in glasses since January of 2012 when Dr. Hertle took him out of them because Hunter kept taking them off and they really seemed to be bugging him.

Before surgery Hunter was pretty much blind in his right eye and slightly blurred in his left. Specialists in Nashville TN and Binghamton NY both said they're was nothing that could be done. We thought else wise, and luckily we did because we found Dr. Hertle that is the nations top specialist in pediatric nystagmus and other pediatric eye diseases that require surgery to correct. He is actually the only doctor in the US that will perform this surgery for children. Luckily he is training a team so others will be able to perform this surgery in the future!

The boys had a few test done on them. They did not find any swelling or buildup behind the eyes. Hunters nystagmus wasn't cured from surgery just corrected. It's not noticeable by most people and only happens rarely. His vision has been corrected to the point where he does not need to wear glasses at this point in time. His right eye is now a +1.50 now, which is very good compared to the before. He should only need glasses come the school years where he will need them for reading. Other than than that it dies not in-pare his everyday activities. He does have an astigmatism in one eye that is not affecting his vision at all which may be corrected later with the glasses.
Kingston's cornea and optic nerve was very clear. His vision was excellent as well. He does have two astigmatisms that will be corrected at school age with glasses as well.

I'm very happy with my bits results and glad that their vision will not be holding them back in any way! :)