Last week one of our nurses noticed something very odd while Kai was sleeping. His heart would speed up, slow down, and pause. Since then we have been very diligent in listening to his heart. We have discovered that when he is sleeping, it will have that unusual rhythm, but when he is awake it is normal.
We haven't taken him in to a cardiologist yet, but we (and some of our nurses) have done some research online. From what we have been able to find, it looks as though it could be a relatively normal heart irregularity and will work itself out in time. Hopefully that is the case, nevertheless, it is very disconcerting to hear.
Of all the issues that Kai has had, his heart has always been strong and healthy. To have his heart basically pausing (or skipping a beat) is a little frightening. I have noticed on his pulse oximeter machine that his heart rate will increase and then decrease while he is asleep, but it doesn't show every beat, so unless we were listening we wouldn't catch it. We were given the cheap pink stethoscopes that they use in the NICU when Kai was released from the hospital. They work fine for our purpose (listening to his lungs to make sure they are clear) but it is hard to hear his heartbeat through the sound of his breathing (and the machines). What I would really like is to get a nice stethoscope so I can listen to everything much more clearly.
Our pulse/ox machine went out a few weeks ago. It stopped reading and kept saying "bad sensor." The machine is "patient owned," meaning that we paid so much in rental cost that we now own the machine. The machine itself has a two year warranty on it, so that if anything were to go wrong, they would take care of the replacement cost and give us a new one. However, that warranty does not extend to the cord, and to replace the cord, it will cost two hundred dollars.
That cost wouldn't be so bad, except we just paid two hundred dollars on a medical bill from Kai's synegis shot (a vaccine for RSV). In order to receive the synegis shot, we have to get pre-approval from Kai's insurances, which we received. Or so we thought. The vaccine comes in a series of five units of two shots each over a period of four or five months. Kai is covered on two insurances, and his primary insurance took care of the $9,000+ (per unit!) part of the bill, and his second insurance should have taken care of the $100 copay (per shot and he gets two shots per unit), but they are saying that for the month of December (and
just December) that he was on a different insurance. We haven't switched insurances or made any changes--nor were we told that he would be switched temporarily and that we would need to get preapproval through that other insurance for December. We have tried to appeal it and done all we could, but we have to pay the copay for the shots in December because they are denying the claim. We have preapproval for all the other shots, which makes absolutely no sense to me, but they are not budging.
What a messed up system. Long story short, we are working with insurance to get his pulse/ox machine replaced. We got a new doctor order and since we have switched primary insurance since the order of the first machine, we have been told that we
might get approval for the new machine--it has to do with the fact that the new insurance hasn't paid for the machine previously. While we wait, however, we are without a working machine, which means we are guessing on Kai's oxygen levels, which can be dangerous. Too much oxygen is just as damaging as too little oxygen. Luckily, Kai has been fairly stable with the amount of oxygen that he needs.
Kai himself has been doing really well. He is getting so big! It is hard to believe that he started out at just over three pounds! He is up to 26 pounds and has huge hands and feet. I think that he will be tall. Thankfully, he hasn't picked up the sickness (yet anyway) that we have been passing around here. It has been almost of month of sickness here. Zuri picked it up from preschool, passed it to me, I passed it to J, then she picked up another cold, and it is going around. I will be so glad when we are all healthy again.
Developmentally, Kai is still at a three to five month old range. He will smile when we smile at him, which is new. I love it! He is so full of love and is just so cuddly. All we need to do is pick him up and hold him to calm him down when he is upset. He will snuggle against us and bury his face into our chest. It is the sweetest thing. He has also been cuddling blankets more. Sometimes all he needs to go to sleep is his blanket. He will take it, bring it up to his face, roll to his side and fall right to sleep with his fingers in his mouth.
Kai still cannot hold up his head, roll onto his tummy, or grab his toes. He is vocal, but does not form anything resembling words, nor does he consistently track toys or objects. However, he is aware of the world, and is just go-with-the-flow.
I was thinking about that the other day, actually. I am so grateful that Kai has such an easy going temperament. Every day I haul him around, stick him in the car, give him a bath (yes--daily, he gets very stinky without a bath every day), and although we have a routine, he is constantly being picked up, maneuvered, and shifted around. Unless he is tired, he doesn't care at all. How hard it must be for parents (especially parents of special needs children) to have kids who cannot tolerate change! I have been very blessed with children who are able to adapt to change well. We have had to learn to be pretty structured, but things happen, such as moving, hospitalizations, new school routines, and more. With all that Kai goes through during the day, it really is nice that he doesn't get fussy very often; it makes my day a little bit easier.
