Just got an update on Luke's surgery tomorrow. They now plan to start around 10:30am instead of noon.
Wednesday, January 19, 2011
Surgery for Luke tomorrow
Luke is getting his feeding tube tomorrow. I just called to get the details for the surgery. They want us there at 7am, but the surgery isn't scheduled until around noon. Lots of wasted time if you ask me...
Since he is on thickened feeds and can't do any clear liquids without problems, he can't eat anything after 2am tomorrow. We will have one HUNGRY and MAD little boy in the morning. At least I'm used to all the screaming and can tune it out pretty well. For everyone else in the waiting room tomorrow morning - too bad...
Since he is on thickened feeds and can't do any clear liquids without problems, he can't eat anything after 2am tomorrow. We will have one HUNGRY and MAD little boy in the morning. At least I'm used to all the screaming and can tune it out pretty well. For everyone else in the waiting room tomorrow morning - too bad...
Monday, January 17, 2011
Luke's surgery is scheduled
Luke will have surgery sometime Thursday at Arkansas Children's Hospital to get his feeding tube. We won't know the exact time until we call Wednesday afternoon and get all the instructions. He should have to stay one night and hopefully will be home on Friday.
Sunday, January 16, 2011
Luke is feeling much better
We were discharged from the hospital late Friday afternoon and were so glad that it was not a long stay. It was nice to know exactly what he needed and that sped things up and kept him from having to stay so long like he did in October.
We will continue to do updraft breathing treatments at home and have some other stronger medicine at home now for when he gets sick next time. It's too early for the doctors to call it asthma, but his "reactive airway disease" and "chronic lung disease" mean that he has bad asthma which we can only hope he eventually outgrows.
He should be having his surgery for the feeding tube very quickly - the surgery clinic should call us tomorrow and he could have it done this week. It's fast, but at least it will be done quickly and he can start to really gain weight. We'll update when we have it scheduled.
We will continue to do updraft breathing treatments at home and have some other stronger medicine at home now for when he gets sick next time. It's too early for the doctors to call it asthma, but his "reactive airway disease" and "chronic lung disease" mean that he has bad asthma which we can only hope he eventually outgrows.
He should be having his surgery for the feeding tube very quickly - the surgery clinic should call us tomorrow and he could have it done this week. It's fast, but at least it will be done quickly and he can start to really gain weight. We'll update when we have it scheduled.
Thursday, January 13, 2011
Luke is in the hospital again
Jack just gets no love. He is doing great, growing well, eating more and more, and is learning a few new words and sounds. He will put his left hand to his mouth - sign language for "eat" - but that's all he knows right now. It helps to keep him from screaming all the time, but that's all he does all day (because it seems like he is hungry all the time).
Luke had his appointment yesterday with the Medical Home clinic at the hospital. Even though he was sick for about a week around Christmas, he did gain some weight. He is gaining about 7 grams a day, which is better than the 5-grams/day that he had been averaging. This puts him in the range of normal weight gain for babies his age. It's still not enough, though - he needs 10-12 grams/day to do any catch-up.
It's not something we want to do, but we are ready for Luke to get a feeding tube. His speech development has dropped off compared to Jack (not saying or learning as many words) and continued delays can turn into big problems if he is not saying sentences and ready to start reading by school time... We have to have a consult with the surgeon and an upper-GI exam to check his esophagus and stomach, but normally the surgery will happen in 4-6 weeks.
Luke decided he misses the hospital too much - he had a very bad night and this morning we took him to the emergency room. When he really gets sick, he goes downhill fast. Last night at dinnertime he began wheezing and coughing a lot. At bedtime he had a breathing treatment, but needed two more to get through the night. By the morning he could not eat and was really having trouble breathing - our treatments and suction machine were still not enough to help.
He was admitted this morning and Rachel just left to go home and get some sleep. Luke is doing much better after the hospital's deep suction and much stronger breathing treatments. The symptoms are the same as his last hospitalization in October, but since we caught it fast and know exactly what he needs, we hope to only be here another day or two.
Luke had his appointment yesterday with the Medical Home clinic at the hospital. Even though he was sick for about a week around Christmas, he did gain some weight. He is gaining about 7 grams a day, which is better than the 5-grams/day that he had been averaging. This puts him in the range of normal weight gain for babies his age. It's still not enough, though - he needs 10-12 grams/day to do any catch-up.
It's not something we want to do, but we are ready for Luke to get a feeding tube. His speech development has dropped off compared to Jack (not saying or learning as many words) and continued delays can turn into big problems if he is not saying sentences and ready to start reading by school time... We have to have a consult with the surgeon and an upper-GI exam to check his esophagus and stomach, but normally the surgery will happen in 4-6 weeks.
Luke decided he misses the hospital too much - he had a very bad night and this morning we took him to the emergency room. When he really gets sick, he goes downhill fast. Last night at dinnertime he began wheezing and coughing a lot. At bedtime he had a breathing treatment, but needed two more to get through the night. By the morning he could not eat and was really having trouble breathing - our treatments and suction machine were still not enough to help.
He was admitted this morning and Rachel just left to go home and get some sleep. Luke is doing much better after the hospital's deep suction and much stronger breathing treatments. The symptoms are the same as his last hospitalization in October, but since we caught it fast and know exactly what he needs, we hope to only be here another day or two.
Friday, December 24, 2010
Tomorrow is Christmas! It's practically here!
The Grinch made a visit to our house this week. It started on Sunday when Rachel woke up with a bad cold. Monday Luke got the stomach bug and spent the next two days throwing up everywhere on everything. Jack was only bad on Tuesday, and I had it all day on Wednesday. Laundry has been going constantly (I'll spare all the details) and it's been a very hard week. It takes all I have to keep up with the boys during normal times when they're healthy - things are so much worse when they're sick...
The good news is we're all almost better. The boys have been extra tired, extra cranky and extra cuddly all week, but they're eating better now and starting to get back to normal. Jack just woke up, so my time is running out. Here are some pictures and videos:
Jack playing with Luke's oxygen tubing
Luke getting into the Christmas spirit
Jack just wanted to get it off his head...
But soon he forgot about it and was off to start some trouble
He pulls up on Luke's oxygen machine and will turn the knobs and adjust the settings
On Wednesday, both boys were so tired they fell asleep while playing
And now two videos:
Jack trying to lick the Christmas tree
Jack wants presents
Thursday, December 23, 2010
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