We're home

[Jimmysmom]

Hi

We got home from the hospital on Saturday, and Jimmy's spine surgery was a success. It will take about 4-5 weeks for it to heal so we have to be very careful when moving him. Good news is that shortly after surgery we were able to come down on his vent settings.

The doctors at Georgetown and the nurses were great, the RT's on the other hand were the pits. It didn't take long for us to ask the docs if we could suction Jimmy when he needed it as most of the time the RT's acted as if they were being inconvienced. The RT had never heard about trach care and didn't seem to have a clue to as what we were talking about. In fact one night at bedtime when I did trach care the RT that was on overnight took out the drainage sponge that I had put on. I asked him why and said that by using those pads around the trach was a bad idea and would irritate the stoma. I set him straight on that one. After awhile they put Jimmy back on his home vent. The RT set up the circuit and was about to put it back on Jimmy when I asked her if she had done a vent check, she said that they didn't bother with that, she said she knew how to hook up a vent. I did the check then and explained that we do one everytime we put on a new circuit. One more example, a RT came in one night just as Jimmy was trying to go to sleep. This was the first time he had worked with us. He was checking over Jimmy's settings and then told us that our LMV alarm that was set at .1 was too low and very dangerous that it ought to be set at least 1.3 I explained to him that at night if its not set at .1 that because of his leak it will alarm all night. He said he would be down in his office and to page him if we had problems. As soon as Jimmy went to sleep it went off so I went ahead and knocked it back down as I was the one that wanted to get some sleep that night.

Once again thanks for everyone's prayers before the surgery, I'm certain they were answered.

Thanks

Anne, mom to Jimmy (4) Infantile Axonal Neuropathy, trach,vent dependent, g-tube and now very straight.

[Jacks Mum]

Ann, Great ot hear Jimmy's surgery went well. and the vent settings are able to come down too

It must of been hard being in hospital with the nurses who have different opinions then your own, it can be quite hard.
We have a care plan for Jack in hospital so all the cares we do with Jack are outlines and how they are done, some with photos so there is no confusion.

Take care
Jessica

[Jimmysmom]

That's a good idea, did you have any help coming up with the care plan, or did you docs just sign off on it? Jimmy's dev. ped. wrote a letter to the docs on the PICU outlining everything about him (amount of feeds and times, size of trach and vent settings, medications and dosing schedules,all the things we would tell them but with a docs signature behind it. It didn't help much as instead of giving him his senakot every night they upped the dosage and just gave it when he got constipated. He's been on this for three years now and as long as we give it every night we don't have many bouts with constipation.

Why do they feel the need to change everything? His regular docs have been working with him for three years to get everything sorted out so now in a matter of days they know enough about Jimmy to make all of these changes.

Its just very frustrating.

Take care

Anne, mom to Jimmy (4) Infantile Axonal Neuropathy, trach, vent dependent, g-tube and now spinal fusion with growth rods. ( A very straight little boy )