It is official, we are out of the PICU and now in room 409. It was almost 9:30 pm before we got everything up here, so unpacking will have to wait until the morning. There are major benefits to our new room!! We have our own bathroom, fridge and a real door! Other benefits include Kade being off of the heart and oxygen monitor! The only tube he has left is his Broviac line that was placed on Tuesday. The line is used mostly for nutritional needs, but can also be used for other meds if needed and blood draws. Currently all meds that Kade takes are oral. He is still adjusting to having formula in his tummy, but he has kept meds down! He had a total of 1 oz over a 30 minute time frame tonight and kept it down for over an hour now. He is resting comfortably right now, so I guess I should also!
Good night and thanks for all of your prayers and support!!
Thursday, July 9, 2009
Thursday Morning (7-9)
Kade and daddy had some play time last night as we were working on his motor skills. He got a mobile for his crib, and he enjoyed playing with it for a little while. Here is a little video on him trying his hardest to reach out for it slap it.
Kade had a hard time resting during the morning hours. His nurse said that he would not rest for more than 45 minutes at any one time. He got to spend a lot of time in the arms of many wonderful and caring nurses. He finally slept for about 2 hours early this morning after they gave him a small bottle of pedialyte. He truly missed his bottle!!
When surgery stopped by this morning he was a really mad little man. They said to give him whatever he wants. Since he is very happy when he has the bottle, They have decided to remove the feeding tube from his nose and let him have a bottle to eat with. Just small amounts to start with and we'll plan to work up from there. Soon after that the doctors rounds started, Kade waited until we all stepped out of the room and then decided to remove the tube from his nose on his own. He is very strong minded. About 30 minutes later we settled Kade in Mommy's arms and gave him a bottle. Enjoy the video of the moment. "Milk in a bottle. Simple but beautiful"
Kade had a hard time resting during the morning hours. His nurse said that he would not rest for more than 45 minutes at any one time. He got to spend a lot of time in the arms of many wonderful and caring nurses. He finally slept for about 2 hours early this morning after they gave him a small bottle of pedialyte. He truly missed his bottle!!
When surgery stopped by this morning he was a really mad little man. They said to give him whatever he wants. Since he is very happy when he has the bottle, They have decided to remove the feeding tube from his nose and let him have a bottle to eat with. Just small amounts to start with and we'll plan to work up from there. Soon after that the doctors rounds started, Kade waited until we all stepped out of the room and then decided to remove the tube from his nose on his own. He is very strong minded. About 30 minutes later we settled Kade in Mommy's arms and gave him a bottle. Enjoy the video of the moment. "Milk in a bottle. Simple but beautiful"
Wednesday, July 8, 2009
Wednesday Night (7-8)
Kade had a busy day today. He was wide awake for most of the morning, and we found out that he loves to watch Baby Einstein. He took a nap around 12 and then physical therapy stopped by to work with him. They were happy to see Kade move his arm and legs as much as he does. He gets pretty mad at times and swings those arms like crazy. I think he is very frustrated because the last thing he remembers was being able to hold his own bottle, feed himself finger foods, and crawl. Kade now has no control of motion when he swings his arms. He ends up hitting him self in the face or the leg most of the time. At least he keeps moving and trying.
I was able to get him to smile this afternoon by making silly sounds and faces. He even started to laugh. It was another huge step for him and us.
I was able to get him to smile this afternoon by making silly sounds and faces. He even started to laugh. It was another huge step for him and us.
Wednesday Morning (7-8)
Happy 11 month Birthday Kade!!
Today also marks 1 month since Kade's original surgery in Lincoln. One month ago we could not have imagined what was about to unfold, the truth is always stranger than fiction.
Our days in the PICU are now limited. During rounds this morning, the doctor mentioned that we could move to a regular floor possibly as early as tomorrow. This is exciting news for us. We are also a little anxious, as we will not have the "cloud of care" we have here in the PICU. Mostly we will miss all of the wonderful Drs and Nurses that we have grown to know and love. One nurse mentioned that they will look at room 207 as "Kade's room" for a long time after we are gone. They will certainly miss their "Kader" as much as we will miss them.
Not much is planned for today, just rest and to get his feeds increased. We were able to give him a little water from a bottle, which he thoroughly enjoyed!! He also had a good bath this morning. Kade is resting comfortably right now, when he wakes we will begin physical therapy.
Thanks to everyone for keeping up with the blog.
Today also marks 1 month since Kade's original surgery in Lincoln. One month ago we could not have imagined what was about to unfold, the truth is always stranger than fiction.
Our days in the PICU are now limited. During rounds this morning, the doctor mentioned that we could move to a regular floor possibly as early as tomorrow. This is exciting news for us. We are also a little anxious, as we will not have the "cloud of care" we have here in the PICU. Mostly we will miss all of the wonderful Drs and Nurses that we have grown to know and love. One nurse mentioned that they will look at room 207 as "Kade's room" for a long time after we are gone. They will certainly miss their "Kader" as much as we will miss them.
Not much is planned for today, just rest and to get his feeds increased. We were able to give him a little water from a bottle, which he thoroughly enjoyed!! He also had a good bath this morning. Kade is resting comfortably right now, when he wakes we will begin physical therapy.
Thanks to everyone for keeping up with the blog.
Tuesday, July 7, 2009
Tuesday Afternoon (7-7)
Kade was able to keep off the vent after surgery. He was quite the handful from what we hear. He decided after he woke up to take the feeding tube out of his nose. He also took off his colostomy bag twice. So they decided it may be a good idea to keep 2 nurses with him in the recovery area until they handed him back to us. It's good that he is a fighter, but putting the tube back in will not be enjoyable for him.
He is resting now and will hopefully stay that way for awhile.
He is resting now and will hopefully stay that way for awhile.
Tuesday Morning (7-7)
Kade is currently in the OR to have a Broviac line inserted. A Broviac line is similar to a Central line, except it tunnels under the skin and can last longer with out posing as many infection risks. We will most likely go home with the line in place. They will need to put him under and back on a ventilator for the procedure. We pray that he comes off of the ventilator when they are done without problems. He has been doing very well breathing, so they do not anticipate him having trouble. The whole procedure will probably take a little over an hour.
Kade has been in good spirits these last couple of days. Withdrawal has not been as intense as it was last week when the drugs were initially turned off. The Drs have found the right combo if strength and frequency of the Methadone/Adavan.
We get to hold Kade pretty much whenever we want, and are able to do it without assistance! He has also taken a liking to Baby Einstein videos, we will watch as many as he wants!
We pray that Kade tolerates todays procedure well, and it is quick to get back on the right path of healing and recovery.
****Update from surgery****
The surgeon just stopped by and made the comment "He should know by now that nothing with Kade is going to be easy". Lucky he said it with a smile so we knew things were OK.
He was able to get the line in and where it needs to be, but Kade's skin is very thin from being so sick. So thin that he couldn't get any stitches to hold. Everything is being held together using steri strips.
They are taking the old line out now and they they will let him wake up a little and try to take him off the vent.
Kade has been in good spirits these last couple of days. Withdrawal has not been as intense as it was last week when the drugs were initially turned off. The Drs have found the right combo if strength and frequency of the Methadone/Adavan.
We get to hold Kade pretty much whenever we want, and are able to do it without assistance! He has also taken a liking to Baby Einstein videos, we will watch as many as he wants!
We pray that Kade tolerates todays procedure well, and it is quick to get back on the right path of healing and recovery.
****Update from surgery****
The surgeon just stopped by and made the comment "He should know by now that nothing with Kade is going to be easy". Lucky he said it with a smile so we knew things were OK.
He was able to get the line in and where it needs to be, but Kade's skin is very thin from being so sick. So thin that he couldn't get any stitches to hold. Everything is being held together using steri strips.
They are taking the old line out now and they they will let him wake up a little and try to take him off the vent.
Monday, July 6, 2009
Monday Morning (7-06)
Hi all,
Sorry we didn't update yesterday, Hanna and Grandma Ruth were down. We enjoyed our time together, playing hide-n-go-seek and coloring.
Kade is more alert than ever. His eyes are opening more and he is staying awake for longer periods at a time. He whimpers and cries a lot from pain and withdrawal. Holding him seems to help both him and us. One of the doctors made the comment yesterday that he is not suffering from a lack of love. Pretty sure that will never be an issue for him! Kade is still getting small amounts of formula, which he continues having a problem keeping down at times. We think that its mostly do to an issue with mucus build up from his nose and lungs that he can't clear on his own. He does a good job coughing but the little guy can't clear his throat like you or I.
He hasn't been running much of a fever these days which is another good sign. We are hopeful that we will move out of the ICU within the next few days. Woo Hoo!! They have finally turned off the last IV drip of pain med this morning. They have been cutting back in it the last few days. Needless to say, last night was a rough night for Kade. Not a lot of sleep for him and he was really hard to console. He will continue to get medications for pain and withdrawals via oral treatments.
He will need to keep a IV line in his body for now. Since he is still only getting small amounts of food in his tummy they need to supplement other fluids for now as well. In order to do this they need to put a different IV line in. The one he has currently is in this groin. Since Kade is using diapers and getting changed frequently there is a higher chance for infection. Surgery will be placing a Broviac line in him sometime over the next few days. Hopefully this will be the last time a line needs to be put in his body.
Kade's tummy looked good enough today for them to remove the drainage pump that had taken the place of the wound-vac about 2 weeks ago. This pump was removing a fair amount of fluid for him on a daily basis, but started to slow down considerably about 3 days ago. So he has one less opening in his body right now.
Besides working with neurology this week, we will also be working with physical therapy as well. Kade has lost the ability to do the normal everyday things from being in a hospital bed for (I really hate saying this now) a month. One of the first things we will be working on is seeing how well he can swallow. It's hard to believe that we will be going that far back, but at least we can relive all his firsts again. The doctors here feel that after we leave Children's, Kade will be spending some time at Madonna in Lincoln.
Thank you again for keeping Kade in your hearts.
Sorry we didn't update yesterday, Hanna and Grandma Ruth were down. We enjoyed our time together, playing hide-n-go-seek and coloring.
Kade is more alert than ever. His eyes are opening more and he is staying awake for longer periods at a time. He whimpers and cries a lot from pain and withdrawal. Holding him seems to help both him and us. One of the doctors made the comment yesterday that he is not suffering from a lack of love. Pretty sure that will never be an issue for him! Kade is still getting small amounts of formula, which he continues having a problem keeping down at times. We think that its mostly do to an issue with mucus build up from his nose and lungs that he can't clear on his own. He does a good job coughing but the little guy can't clear his throat like you or I.
He hasn't been running much of a fever these days which is another good sign. We are hopeful that we will move out of the ICU within the next few days. Woo Hoo!! They have finally turned off the last IV drip of pain med this morning. They have been cutting back in it the last few days. Needless to say, last night was a rough night for Kade. Not a lot of sleep for him and he was really hard to console. He will continue to get medications for pain and withdrawals via oral treatments.
He will need to keep a IV line in his body for now. Since he is still only getting small amounts of food in his tummy they need to supplement other fluids for now as well. In order to do this they need to put a different IV line in. The one he has currently is in this groin. Since Kade is using diapers and getting changed frequently there is a higher chance for infection. Surgery will be placing a Broviac line in him sometime over the next few days. Hopefully this will be the last time a line needs to be put in his body.
Kade's tummy looked good enough today for them to remove the drainage pump that had taken the place of the wound-vac about 2 weeks ago. This pump was removing a fair amount of fluid for him on a daily basis, but started to slow down considerably about 3 days ago. So he has one less opening in his body right now.
Besides working with neurology this week, we will also be working with physical therapy as well. Kade has lost the ability to do the normal everyday things from being in a hospital bed for (I really hate saying this now) a month. One of the first things we will be working on is seeing how well he can swallow. It's hard to believe that we will be going that far back, but at least we can relive all his firsts again. The doctors here feel that after we leave Children's, Kade will be spending some time at Madonna in Lincoln.
Thank you again for keeping Kade in your hearts.
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