Well, we had a good appointment today. Bentley and Marseille are both stable. Their organs looked good– as good as they can– with little to no change. What a blessing.
We were ready for this appointment because Bentley has been throwing up randomly and has been complaining of being tired a lot. He had 3 throwing up episodes in past four weeks with no real sickness attached to them, and no new unusual foods. I thought that his blood pressure medication might be too high for him now, but his blood pressure was good when they checked it so his medicine is going to stay the same. At first it was high and they had to recheck it.
I was really proud of Marseille, it was the first appointment in her entire life so far that she didn’t cry the whole time. The Dr. actually got to feel her stomach :) YAY! Though she did cry the two of the three times that she had to get her blood pressure taken… we’re working on that! Marseille’s blood pressure was still high after her not crying reading, so we have to up her dosage.
Anyway. Another good thing that came out of the appointment, in a round about way, was their blood pressure prescription. We no longer have to get it compounded, this will save us a lot of money and time! Because compounding is expensive for pharmacies they don’t take insurance, but now since Marseille’s dosage changed we can just get the pill form. And because we live in America and a lot of people have high blood pressure, it is on the $4 list at most pharmacies!! What a huge blessing!! I just have to crush it for them :)
Now on to the issues! Both Bentley and Marseille came back with high CO2 counts. The Dr. is thinking that they might have Respiratory Acidosis. Basically Respiratory Acidosis is an acid imbalance in the body caused by breathing problems. There is an excess of CO2 and if forms an acid in the blood. The “remedy” for them is sodium bicabonate or an antacid.
The Dr. was also concerned with how small Marseille is. She has not grown much in the last year and Bentley has capped off too. PKD does make children smaller, but not as small as Marseille. Danny’s and my heights were factored into his thinking, but the high CO2 can definitely be contributing to her size. He was okay with their weight, just not with their growth. They ordered more blood work for their blood gases and to get a more accurate CO2 count. The Dr. said that they would call with the results and they scheduled our next appointment for August.
So, we drove over to the hospital to have the kids get their fingers pricked. As soon as we stepped into the room to get their fingers pricked, Bentley put his head down and said very quickly, “I don’t like these people!” and then began to wail. The respiratory lab workers were definitely not used to drawing blood from kids, but the kids left on good terms :)
So, overall it wasn’t a bad visit! We will let everyone know the results!
Thank you again to all who prayed for us this morning and continually lift us up in our prayers! We are grateful :)