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.
Monday, January 17, 2011
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
Saturday, December 18, 2010
Getting ready for Christmas
It is great to be excited about Christmas again. Last year we pretty much skipped Christmas - it was not a happy time. Jack had been home just over a month, but Luke was still in the hospital. Flu season was in full swing, the hospital had extra precautions because of swine flu, and Jack was not allowed to see Luke in the hospital. We took him up anyway and had a plan to quickly get them together, but it did not work. All we wanted was one family picture of our first Christmas. The boys didn't have to touch or be close at all - we just wanted one picture with the four of us... We didn't do much celebrating last year and didn't decorate at all - no tree, no lights, nothing.
This Christmas season has been so much better. The boys are into everything, crawling and climbing everywhere and screaming a lot, but at least they are both home and we can celebrate our first Christmas together as a family. We have been listening to some Christmas music and watching a lot of the Grinch and Christmas Carol movies (Muppets Christmas Carol, Flinstones Christmas Carol and Mickey's Christmas Carol). Our Christmas tree is surrounded by a metal baby gate to keep boys and dog from attacking the tree or snooping around the presents.
Jack checking out the presents under the tree
Trying to figure out how to get in there
Jack is getting more teeth and is very grumpy most afternoons. He rarely stays still or wants to cuddle, but sometimes he will now
Two crazy boys playing around after their baths today
Here are a few videos:
Luke dancing while listening to Taylor Swift. We were watching the live music from the 2010 NFL Kickoff season-opening game in New Orleans, and the boys liked it!
Jack and Lily playing on the floor
Luke playing with Lily's toy
Jack and Luke playing with Lily. Luke is not very excited and just wants to chew on his oxygen tubing...
This Christmas season has been so much better. The boys are into everything, crawling and climbing everywhere and screaming a lot, but at least they are both home and we can celebrate our first Christmas together as a family. We have been listening to some Christmas music and watching a lot of the Grinch and Christmas Carol movies (Muppets Christmas Carol, Flinstones Christmas Carol and Mickey's Christmas Carol). Our Christmas tree is surrounded by a metal baby gate to keep boys and dog from attacking the tree or snooping around the presents.
Jack checking out the presents under the tree
Trying to figure out how to get in there
Jack is getting more teeth and is very grumpy most afternoons. He rarely stays still or wants to cuddle, but sometimes he will now
Two crazy boys playing around after their baths today
Here are a few videos:
Luke dancing while listening to Taylor Swift. We were watching the live music from the 2010 NFL Kickoff season-opening game in New Orleans, and the boys liked it!
Jack and Lily playing on the floor
Luke playing with Lily's toy
Jack and Luke playing with Lily. Luke is not very excited and just wants to chew on his oxygen tubing...
Thursday, December 9, 2010
Update on Luke and the past month
It's been a very busy, long and tiring past few weeks and almost a month since the last update. Community Connections' A Royal Night Out was a huge success - the second annual event almost doubled in size and doubled the money raised! The day after that, we flew to Charlotte to spend the week of Thanksgiving with family in South Carolina. The boys traveled well and we had a great time - it just took them a few days to get back into their normal routine once we were back home.
Last week Jack and Luke had the second half of their one-year shots. Luke did well and only cried until the shots were done. Jack's leg must have been asleep, because all he did was stare at the nurse with a serious face - no crying, not even a frown... In the past two weeks, Luke has had three appointments at the hospital. The first was at the audiology clinic to retest his hearing. He failed one test before coming home in January (not uncommon for babies on a lot of oxygen like he was) and this appointment has been set since the spring. Luke did fine and they just want to see him in another year to check one more time.
Tuesday Luke went to the pulmonary clinic for a 1-month followup. After his hospitalization in October, Luke was on oxygen all day and night. Last month the pulmonary clinic had us discontinue daytime oxygen and only use it at night. Luke has continued to grow slowly but steadily until now. He lost weight this past month - dropped from 5.8kg to 5.6kg. Luke is now back on oxygen all the time and we expect it to continue at least through the winter.
Since February, Luke has had monthly visits to the high-risk newborn clinic at the hospital. They have kept a close watch on his growth and development, but the doctors have been very conservative and at times slow to act when we have brought up concerns. During Luke's hospitalization in October, the pulmonary team let us know about the Medical Home Clinic at the hospital. It is a place for kids with chronic medical conditions that need the services of multiple clinics at the hospital (Luke has seen newborn, eye, audiology, radiology, and pulmonary clinics and has had two hospitalizations since being home). They will help coordinate multiple appointments by making sure they are scheduled the same day. It should be a big help and will let us squeeze things into one day instead of making three visits like we have these last two weeks.
Yesterday was Luke's first visit to the medical home clinic. Rachel was working but was able to leave her unit and be with us for most of the visit. The doctor and nurse were great and will be very proactive with his care plan. While we are excited about the change, it was not a good day. We have known since the spring that if Luke does not gain enough weight consistently, the last resort is a feeding tube.
All year long, the newborn clinic has tweaked his "recipe" and increased the calories of his formula each month. They were concerned about his slow growth curve, but his growth has been proportionate (weight, length and head circumference) - that is no longer the case. If babies are not getting enough calories, slower head growth is the first sign, followed by slowed development. Yesterday's measurements showed that Luke's head growth is no longer following his length and weight.
Luke is eating all that he can/will right now, but the doctor thinks it is only about 60-70% of the calories he needs. Babies need to gain about 20 grams per day for normal growth and Luke's best average has only been around 7 grams. The doctor is giving him one more chance until the next appointment - we are adding more calories to his formula and Luke is also starting Reglan. We do not have a date for his next visit, but it should be in 4-6 weeks.
Last week Jack and Luke had the second half of their one-year shots. Luke did well and only cried until the shots were done. Jack's leg must have been asleep, because all he did was stare at the nurse with a serious face - no crying, not even a frown... In the past two weeks, Luke has had three appointments at the hospital. The first was at the audiology clinic to retest his hearing. He failed one test before coming home in January (not uncommon for babies on a lot of oxygen like he was) and this appointment has been set since the spring. Luke did fine and they just want to see him in another year to check one more time.
Tuesday Luke went to the pulmonary clinic for a 1-month followup. After his hospitalization in October, Luke was on oxygen all day and night. Last month the pulmonary clinic had us discontinue daytime oxygen and only use it at night. Luke has continued to grow slowly but steadily until now. He lost weight this past month - dropped from 5.8kg to 5.6kg. Luke is now back on oxygen all the time and we expect it to continue at least through the winter.
Since February, Luke has had monthly visits to the high-risk newborn clinic at the hospital. They have kept a close watch on his growth and development, but the doctors have been very conservative and at times slow to act when we have brought up concerns. During Luke's hospitalization in October, the pulmonary team let us know about the Medical Home Clinic at the hospital. It is a place for kids with chronic medical conditions that need the services of multiple clinics at the hospital (Luke has seen newborn, eye, audiology, radiology, and pulmonary clinics and has had two hospitalizations since being home). They will help coordinate multiple appointments by making sure they are scheduled the same day. It should be a big help and will let us squeeze things into one day instead of making three visits like we have these last two weeks.
Yesterday was Luke's first visit to the medical home clinic. Rachel was working but was able to leave her unit and be with us for most of the visit. The doctor and nurse were great and will be very proactive with his care plan. While we are excited about the change, it was not a good day. We have known since the spring that if Luke does not gain enough weight consistently, the last resort is a feeding tube.
All year long, the newborn clinic has tweaked his "recipe" and increased the calories of his formula each month. They were concerned about his slow growth curve, but his growth has been proportionate (weight, length and head circumference) - that is no longer the case. If babies are not getting enough calories, slower head growth is the first sign, followed by slowed development. Yesterday's measurements showed that Luke's head growth is no longer following his length and weight.
Luke is eating all that he can/will right now, but the doctor thinks it is only about 60-70% of the calories he needs. Babies need to gain about 20 grams per day for normal growth and Luke's best average has only been around 7 grams. The doctor is giving him one more chance until the next appointment - we are adding more calories to his formula and Luke is also starting Reglan. We do not have a date for his next visit, but it should be in 4-6 weeks.
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