"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Monday, June 15, 2009

Recap of the day and further explanation

So today Connie was not himself. He fussed if I left the room, fussed if I didn't hold him and fussed if he had to be upright for any length of time. He hardly touched his food and says he's all done after about one minute of an sort of activity other than laying on the floor. He started this some on Saturday, but we thought he was just tired. Yesterday was a little better but today was the worst. I thought to myself that I don't want to let his heart get as bad as last month so I called. The worst they could tell me was I was overreacting or something. Nurse Kelley came on the phone and said to send in a pacemaker transmission. This was about 4pm. I had to go to my parent's house to do so because we don't have a land line here. I called the office as soon as the report was complete and Kelley was already pulling it up. She sounded a little like she was in thought about it and then asked if she could have the Dr. call me back after he'd taken a look. She said nothing looked "horrendous" but she just wasn't sure. She called back five minutes later and said, "Come on in." I knew that wasn't good. MK, Connie and I sped down hwy. 70/270 to St. John's. We went straight in and got "the big room" (the one that has space for the cart that has the pacemaker interrogator machine. As soon as she hooked him up they could tell he was in atrial flutter again. Dr. Bromberg tried to convert him right there with the machine but was unsuccessful. He got on the phone with Dr. VanHare at Children's to set up a transesophogeal echo and cardioversion. He said he didn't think Connie was needing to have it done right away but also knew he wouldn't tolerate two weeks of anti-coagulation first because last time proved to us that his heart function deteriorates to much for that. Dr. VanHare's primary concern is the anti-coagulation levels post-cardioversion so his plan would be to admit Connie after the procedure for how ever many days it takes for his INR levels to get to a therapeutic level. He would even put him on Heparin in the hospital. Dr. Bromberg, with our quality of life in mind, suggested that as long as he's doing as well as he's doing now (sleeping, eating without throwing up, etc.), our plan should be to start him on coumadin now so that for the next few days he can get his levels up and THEN go through with the cardioversion on an outpatient basis. We like that plan better too! So, for now, the plan is to give 3mg of coumadin tonight and tomorrow night and then to give 2mg on Wednesday night. Then Thursday we'll take him in and they'll proceed with the TEE and the cardioversion (shock to get his heart back into normal sinus rhythm). This is the same thing he had a month and a half ago, but this time, we think we caught it earlier. For a little background, we've been periodically checking Connie's heart rate for that magic number of 100. We've been told that if he were to go into flutter again that his pacer would kick in the mode switch and automatically pace him at 100 so that would be our red flag. Well, we've been checking him and even today we are not getting 100. Dr. Bromberg said that the mode switch "isn't working". We don't yet have an answer for this. We are quite frustrated. Kelley said that the report shows that it "switched" some 19 times and then all it says now is "suspended". Dr. Bromberg said that looking at the report from the pacer, it shows several days (like more than 4) of high rates. Poor baby. No wonder he is asking to be held and doesn't want to play for more than a few minutes.

The other bummer, and it's a big one, is that he's now going to have to start amiodarone, a strong anti-arrhythmia drug. I'm taking Dr. Bromberg's advice and not looking it up to read all the horror stories about it. I did ask what we should watch for and he said we wouldn't see anything if something were wrong. The main side effects include issues with the thyroid, liver function, lung function and hematologic function (blood counts). He'll have to do a number of labs on Connie to monitor these areas and if need be, prescribe more meds to deal with those side effects. He'll also be hypersensitive to the sun, which shouldn't be a big deal for us b/c he has a rash guard on in the pool anyway so his scars wouldn't discolor and we practically own stock in coppertone with all the sunscreen we buy.

Coumadin (the blood thinner) has also been started and will probably be taken for at least three weeks or so following Thursday's procedure.

I guess this is why I haven't heard back about my interview yet. I guess God has more important things for me to do with my time!!

We continue to beg you for your prayers and ask that you specifically pray for Connie as he undergoes his TEE and Cardioversion. Pray that God will remove his fear of doctors and nurses and that he'll keep Connie comfortable and healthy until then. Please pray this prayer as often as you can over the next week.

Thank you,


The McCrums said...

Prayers are coming your way.....The McCrums

H. James said...

Keeping you all in our thoughts...

Doug and Kristin Dalitz said...

You all continue to be in our prayers.

Unknown said...


I'm so sorry Connie is going through all of this again.

Eli took Amiodarone from age 5 months until just before his 3rd birthday with no problems.
Most of that time he was on a dose of 200mg daily, which must be high because the pharmacist would call the PC everytime he wrote a new prescription. lol

We did routine blood tests for liver, thyroid and lung function and avoided the sun. There is also a danger of eye damage. We went regularly to test eyes-it can cause crystal formation similar to cateracts. This is worsened by sun exposure also.

We had to do hat, sunglasses and sunscreen which is difficult at that age so we just avoided the sun.

I hate that medicine but am so thankful that Eli was able to tolerate it for so long. No arrhythmias since we stopped it 8 months ago!

Sorry for the book-just wanted to reassure you!
Take care~