So thankful that God is in control...

All week last week Chase had trouble with his blood pressure being high. We had visited the nephrologist the week before and had a plan to monitor his BP morning and evening while we were waiting on some tests to come back. I talked to the nephrologist on Tuesday and found out most of the tests came back ok, but he had blood in his urine and a high urine PH. We were told to continue monitoring his BP and he would make a decision on Monday (today) about the medicine. As the week went on, his BP got higher and higher so I called the doctor and left a message.

On Friday evening he called me back and we had a very long conversation about Chase’s blood pressure, dizziness, the blood in his urine and stool, his salty skin and other ongoing issues. He decided to not wait until Monday for the meds and called a local pharmacy to have a BP medicine compounded for Chase. We left immediately to go get the medicine and stopped to pick up supper. When we got home, we all sat down to eat and Chase wanted out of his high chair. I got up and got him out and he couldn’t stand up. He has trouble standing often so I just picked him up and stood him back up. As he began to walk toward the living room he was holding on to the wall and staggering. He had a very blank stare as he looked back at Ryan, his Nana, and I. We all immediately knew something was wrong. For the next couple of minutes he continued to fall and stare and stagger sideways as we were getting the cuff to take his BP. Without an expression, Nana said “get his medicine” as she pumped the BP cuff again and again. It was 162/100 and his heart was racing.

I called the answering service at the hospital and was quickly connected with his nephrologist. Her instructions were to take him to the nearest hospital and they would send the transport team after him. I explained we could get him there sooner than going through the local hospital and that we had just given him a dose of the medicine. She told me that he could begin having seizures at any time and to be aware of it as we traveled to the children’s hospital. The ride down was scary and Chase continually patted his eyes and rubbed them as if he couldn’t see anything. They were waiting on us when we arrived and decided to admit him for monitoring. His BP was down to 94/70 about 2 hours after we gave him the medicine. His BP fluctuated all weekend, but remained within normal range with the meds and we brought him home yesterday.

They really have no explanation for all of this and do not know if it is connected to PHA (I believe it is). They are testing him for Pheochromocytoma - a rare tumor in the adrenal gland that effects adrenalin and can cause similar spikes in BP. The test takes a while to come back, they said maybe the end of this week or next. We are still monitoring his BP and trying to adjust his medicine as it is making him tired and want to sleep a lot.

I know it isn’t sheer irony that Friday unfolded as it did. It was all God’s perfect plan. It was perfect that when we knew something wasn’t right with little Chase, Nana just happen to be here to take his blood pressure and we had just picked up his medicine and had it in hand to dose him as soon as we did. Anything could have happened, but God was in control.

His next colonoscopy will take place on Monday, the 17th . They are going to do the procedure in the OR because of his medical history, BP, and low weight. We have to begin the clean out process on Thursday giving him equal doses of Miralax on Thursday, Friday and Saturday and then stopping his feedings and increasing the doses on Sunday while putting him on clear liquids. I feel so bad for the little guy and I pray that God will make this procedure as painless as possible as his last one was awful.

Chase continues to amaze me daily as his smiles never end. J

Enjoying the rooftop terrace playgroud at the children's hospital.