This is everything that we HAVE to bring with us when we take Kai out of the house. The only place he is allowed to go right now is to his doctors appointments, but believe me, even if we could take him elsewhere, it is so difficult that it really isn't worth it. Babies require a lot of stuff as it is, now mulitply it. We have to bring his monitor, his oxygen, his suction machine, his feeding bag, emergency trach and g-tube bags, his medical documents, then there is Kai himself and the carrier, plus all the other baby essentials such as diapers, wipes, extra clothes, extra food, etc (and that is just the bare minimum).
It is very stressful taking Kai out of the house. It is a process, and we always seem to have to pull over while we are driving to suction him. He also has a knack of knocking the oxygen and HME (trach nose) off so he can't breathe and his oxygen saturation dips into the 70's (it needs to be 90 or higher).
I admit, there are times when I literally feel trapped in the condo. Not only that, but trapped in the living room. You see, with a normal, healthy baby, you can leave the baby's side and go into another room, but with Kai, he has to be within your line of sight at all times. I can't even take take a shower. For one, he can't cry or make sounds with a trach, so you have no idea if or when he is in distress. Two, with the trach if he spits up (which he does, just like regular babies) the spit up has a high chance of going into his trach and getting into his lungs and he could aspirate and die. Three, he has mucus build-up just like we do, but because of his trach, he can't just swallow it away (which is why we have to suction him), and so it builds up and can block the trach opening and again kill him because he can't breathe. Trust me, it happens so fast. We have had to do an emergency change of the trach a few times now and it is literally within seconds that things can go from being just fine to critical. Four, we can't just leave him with a babysitter so we can go out. We have to train someone who is willing to take on the responsibility of such a child. There have been times when I have been super excited just to get out of the house and go to Wal-Mart. Work has been a welcome relief. Five, when he wriggles and moves himself around, he often moves the trach mask (the blue tube that covers his trach) off and then his oxygen saturation levels drop below 90. Six, he is not very portable, even in the house, so he can go as far as his tubing allows, which is less than six feet.
To make things even worse, there is a real possibility that we won't have the night nurse anymore because Kai is doing so well. In order to have the nursing, you have to have a certain number of points. The more points you have the more need there is for a nurse. Kai is fairly low maintenance where special needs kids are concerned. He needs less than ten suctions per 24 hr period on average, whereas some kids need to be suctioned several times an hour. He is on bolus feedings (where he is fed a certain amount, we are up to 75 ml) every three hours, whereas many kids with g-tubes are on continuous feedings (meaning that they always have food being pumped into them). The list goes on. Honestly, I don't know how we would do it without the nurse. J and I have talked about taking shifts during the night. We talked with Kai's primary nurse and she said that she doesn't know how we would do it either because there is too much to be done and watched for to have us do it on a 24 hour basis. We need to be able to sleep.
We are praying that we will be able to keep the nursing, at least for another 60 days (nursing is approved in 60 day cycles). It is hard enough with the night respite hours, I don't know how we would be able to make it work without those eight hours.
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