The normal everyday life in Holland...
Last week started off with a few clinic visits to the pediatrician for bladder problems, a bad cough and the usuall breathing difficulties that accompany that, and a strep test . After a prescription for steroids and antibiotics, and few days resting at home Deklin's cough and respiratory issues were good as new (kind of). We Scheduled an ultrasound for his bladder and kidneys, and his strep test was negative. Wednesday his GJ-tube coiled again so first thing Thursday morning we headed down to Madison to have that changed. Deklin was already scheduled for an MRI on Friday so we spent the night at Ronald McDonald house Thursday night.
 |
| After his MRI, still a little loopy. |
The good things Holland has to offer...
Over the last 4 (almost 5) years I have met some wonderful people, who like myself have unexpectedly found themselves navigating through the streets of Holland. This weekend Deklin and I got to spend the weekend with one of those families. Deklin had so much fun playing with K and Z. K and Deklin are the same age and are both tube fed, have many of the same allergies/ restictions with food, and get along really well. The mommies spent the weekend chatting, sewing, venting, comparing stories, and not getting nearly enough sleep. It is wonderful for the boys (and mommies) to have someone to play with who is just like them.
 |
| The boys |
We planned to head home Sunday, but Deklin's tube had other plans...It coiled again. So we spent one more night at our friends house and headed in to the hospital Monday morning. (Deklin's tube has to be replaced in IR and they aren't there on the evenings and weekends. He wasn't dehydrated and was keeping down some fluids so we waited until Monday morning) We went in through the ER because that is usually the quickest way to get his tube changed and he had an ultrasound scheduled for later that day at our local peds office. His GI doc came in to see us in the ER and told me that we could not replace his GJ anymore. Because of Deklin's anatomy any GJ that we put in is highly likely to coil at some point, and we can't keep changing them every few days/weeks. We are currently in the process of switching Deklin's GI care from Madison to Milwaukee, so Madison GI wanted to consult with Milwaukee on what the plan should be. The plan ended up being to admit Deklin to the GI floor in Milwaukee and that is where we have been since Monday. We were supposed to be flying to Arizona on Saturday but it looks like we are going to have to reschedule our trip.
 |
| Trying to play the PS3 |
The plan....
We are hoping to be able to transition Deklin back to G-tube feeds. With Deklin's history of aspiration there is some concern about transitioning back to G feeds, so we have been running tests and making sure it is safe to transition him back to G feeds first. The plan is to medicate him with anti-nausea and pain meds for the first 24-48 hours as we try to slowly work our way up on his feeds. Right now he is running at 30ml and hour and he needs to be able to tolerate 55ml and hour before he can be discharged. The plan is to continue going up 5ml every 2 hours until we reach 55. Deklin has had some discomfort, nausea, and vomiting, but we are hoping over the next few days his tummy will adjust to having food in it again and all of that will subside. If the G feeds fail we do have a couple of other plans in mind, but we will cross that bridge if we come to it.
 |
| But I'm not tired mom |
The good new is we've had time to complete his 335 piece Power Rangers Lego set.
No comments:
Post a Comment