Posted (Tina) in All Posts on September-15-2009

It has been 2 weeks since Ella’s echo that showed her stints have narrowed causing pressure in her superior vena cava. It explains why the collateral veins have re-appeared all over her chest. Actually, the veins have become even more prominent which tells us that it is getting worse, not better. Moreover, she has been extra fussy. Typically this type of behavior appears when she is not feeling great. It isn’t that she is fussy all the time, but it is a lot of the time. Plus, when she is not doing what she wants, she has no tolerance. So holding her breath and having spells has become a frequent occurrence. Her baseline oxygen requirement has gone back up to 1 liter. Even then, her color doesn’t look as good and her eyelids get a purple color. Thankfully, we have not had pass out spells, but she desaturates very fast.

I had not heard back from the hospital to schedule her procedure. I was getting concerned and decided to rattle some cages this morning. Good or bad, we have an appointment next Wednesday at 6am. Check-in time is 6am and the procedure is scheduled for 7:30am. Yikes, none of us are morning people, but it is the soonest time so I didn’t want to negotiate on the time slot.

I’m bummed that Ella has to have this procedure. I wish it had been at least a year before having to go back to do maintenance on the stints. I’m scared that this might mean 2x/year visits to the heart cath lab. That is not a fun thought since it requires anesthesia and putting her out; there is always risk with this type of procedure.

We wanted to cluster care to see if we could get teeth or ears checked out while she was sedated. Based on the appointment being the first procedure of the day, we have a good chance of things timing out the way we need. The audiology ABR test scheduled for 10am. As long as Ella is done with the heart cath procedure, it will time out beautifully. However, the test takes 60-90 minutes. So if she is not ready at 10am, the audiology test will need to be rescheduled for another time (that is the only time slot they have available). We’re still working to see if someone from the dental clinic can come look at her teeth while she is in the cath lab. Hopefully, that will work out too.

Once all her tests are complete, I’m sure we will spend the night at the hospital. This will be the 3rd hospital stay this year and hopefully just an overnight visit. Last time, the anesthesia gave her diarrhea and a bad tummy ache. We had to fight with the nursing staff for 2 hours for a dose of Maalox to calm her. I think I’m just going to have it handy in my bag this time, so we don’t have to have unnecessary battles. The anesthesia also makes her itchy, so we’ll need to watch for that symptom too. All in all, she looked worse after the procedure. It wasn’t until about 24 hours later that she started to do well, but that is fairly quick. I’m hopeful that it will be the same thing this time.

It is a blessing that Josh does not have a job right now, so that we can all endure this time as a family. On a positive note, the Lord has provided some small contract jobs. This is not even close to meeting our needs, but every little bit helps and we are thankful.

Please pray for Ella. We really want her to feel better and pray for an uneventful procedure and quick recovery. In the meantime, for Ella to hang tight and deal with this icky feeling and lack of oxygenation. And please pray for me and Josh. Every time we return to the familiar setting of the hospital and our baby girl has a procedure, all the emotions of our journey surface. It is hard not to let it weigh heavy on your heart.

We’re not sure what His divine plan means, but trust that there is a greater purpose in all of it.

1 John 4:16 (NIV)
And so we know and rely on the love God has for us.
God is love. Whoever lives in love lives in God, and God in him.