Yesterday the nurses removed Caeden's drainage tube from his side. It was so nice to be able to hold him without this big bulky tube in the way. The only wires left connected to Caeden and the machine were the wires that take his heart rate and oxygen level. Therefore, we asked the nurse if we could remove the sensors and hold him by the bedside and she agreed to that and we absolutely loved it.
Also, yesterday they finally weighed and measured Caeden. He weighed 8.5 lbs and was 22 inches long. It confirmed our suspicions that he had grown while in the hospital.
We were finally discharged from the hospital today around 3:00 pm! We were so excited and couldn't wait to get back home. On the way home we had to pick up some medicine for Caeden from the pharmacy. A home care nurse will be coming to our house tomorrow morning to help administer the antibiotic through his Broviac central line. Also, the nurse will show us how to take care of the central line because these are prone to infections and can be very serious if it gets infected.
By the way, there was a funny story that occurred a couple of days ago that we have yet to post about. I was sound asleep and Denae had gotten up to feed Caeden. Denae decided to change Caeden's diaper before feeding him and proceeded to do so. I was immediately awoken when I heard Denae scream and gasp which caused me to jump out of bed. My first thought was that Denae had dropped Caeden on the floor. However, I heard Denae start to laugh shortly thereafter. Denae informed me that Caeden had started to pee on her which startled her because this was the first time that he had done so. I have experienced this more than once because I think Caeden likes to pee on his Dad. In the end everything was okay and I went back to bed and Denae proceeded to feed Caeden.
Thursday, January 28, 2010
Monday, January 25, 2010
Eating & Sleeping
Caeden has been back to his schedule of eating and sleeping. He is improving every day and looking better each day. It appears that he has grown while in the hospital. Denae and I have noticed that he has gotten longer and his legs are a little chubby now.
Dr. Lemon stopped by today and said that Wednesday will be the last day of the steroid that they are giving Caeden. Also, they should be able to remove the drain tube from his side on Wednesday. The drainage has slowed down so that is a good sign and shows that he is healing up well. If all goes well we should be able to go home Thursday or Friday. The day that we will be released will be the first blood draw that Caeden will have had since the surgery. They will measure his bilirubin levels but Dr. Lemon informed us that Caeden's levels will still be a little high because it will take longer to thin out the bilirubin.
Dr. Lemon stopped by today and said that Wednesday will be the last day of the steroid that they are giving Caeden. Also, they should be able to remove the drain tube from his side on Wednesday. The drainage has slowed down so that is a good sign and shows that he is healing up well. If all goes well we should be able to go home Thursday or Friday. The day that we will be released will be the first blood draw that Caeden will have had since the surgery. They will measure his bilirubin levels but Dr. Lemon informed us that Caeden's levels will still be a little high because it will take longer to thin out the bilirubin.
Saturday, January 23, 2010
Refreshed
Well, by the graciousness of Denae's parents Denae and I were able to get a good nights rest at home. Scott & Sue arrived at the hospital around 9:30 pm and stayed the night with Caeden. We were able to get rested up and come back to the hospital around 7:30 am. The report was that Caeden did great last night and he was held the whole time which I'm sure he loved.
We had an interesting day with some excitement from the room next to us. The parents started yelling and cursing at each other and the nurse had to threaten to call security if the mom did not leave. The mom ended up leaving on her own accord and then everything calmed down.
Today was a great day because we were able to start feeding Caeden breast milk. He sucked down the first bottle around 5:30 pm and you could tell that he was loving being able to eat again. We can now feed him every three hours and get him back to a routine again. Dr. Lemon will be back on Monday so we should find out how much longer we will have to stay in the hospital.
We had an interesting day with some excitement from the room next to us. The parents started yelling and cursing at each other and the nurse had to threaten to call security if the mom did not leave. The mom ended up leaving on her own accord and then everything calmed down.
Today was a great day because we were able to start feeding Caeden breast milk. He sucked down the first bottle around 5:30 pm and you could tell that he was loving being able to eat again. We can now feed him every three hours and get him back to a routine again. Dr. Lemon will be back on Monday so we should find out how much longer we will have to stay in the hospital.
Friday, January 22, 2010
Freedom from Tubes
Denae and I did not get much sleep last night because Caeden was very active and fussy. We took turns getting up with him throughout the night and we figured that he probably was in a little bit of pain. We asked the nurse about adjusting his pain medicine and so the nurse called the anesthesiologist and they came up and gave him some additional pain medicine.
Dr. Mcloughlin and Dr. Lemon came by to check on Caeden today and felt that he was doing good. The anesthesiologist removed the epidural today and shortly thereafter the nurse removed the NG tube from Caeden's nose. The nurse also removed both IV's from his hands. We had to wait 4 hours before the nurse could remove Caeden's catheter. Once they removed most of the tubes we were able to give Caeden his first sponge bath since the surgery. We had to give him his bath on the bed and we just put towels underneath him. He is now a clean baby and smells good.
Dr. Mcloughlin and Dr. Lemon came by to check on Caeden today and felt that he was doing good. The anesthesiologist removed the epidural today and shortly thereafter the nurse removed the NG tube from Caeden's nose. The nurse also removed both IV's from his hands. We had to wait 4 hours before the nurse could remove Caeden's catheter. Once they removed most of the tubes we were able to give Caeden his first sponge bath since the surgery. We had to give him his bath on the bed and we just put towels underneath him. He is now a clean baby and smells good.
Thursday, January 21, 2010
Moved to Pediatric Specialty Unit
We were awoken at 4 a.m. this morning with the nurse tapping Denae's shoulder saying that we had to move. Denae and I popped up out of bed thinking that something was wrong and that something had gone wrong with Caeden. However, the nurse assured us that everything was ok and that she was just telling us that they were going to move us to a new room on the 6th floor and that we had an hour to get ready to move. The charge nurse came in about a half hour later and said the plans had changed and we wouldn't be moving after all.
We eventually fell back asleep and then were awoken once again when Caeden started crying and then the alarms on the monitor started going off. I hopped up and went to check on Caeden and he had pulled the tube almost completely out of his nose. He was even able to pull the tape off of his check that was holding the tube in place.
They ended up finally moving us up to the sixth floor in the pediatric specialties unit. When we left the intensive care unit all of the nurses were very sad to see him go. He was a popular little guy with all of the nurses and they couldn't stop talking about him and how cute he his (blessings that he got from his Dad). We now have our own private room with our own shower and bathroom which is very nice.
Caeden has done very well today and we have started to see signs that he is getting back to his old self. We were able to hold him several times today which was a lot of fun and I think Caeden enjoyed it as well. He was talking a little bit in the afternoon today and he also had a couple of smiles. He has been awake most of the afternoon and had his first poopy diaper in three days. This is a very good sign because it means that his small intestines are starting to recover and work again. Caeden will start being fed through an IV tonight and should be able to go back to breast milk in a couple of days.
We eventually fell back asleep and then were awoken once again when Caeden started crying and then the alarms on the monitor started going off. I hopped up and went to check on Caeden and he had pulled the tube almost completely out of his nose. He was even able to pull the tape off of his check that was holding the tube in place.
They ended up finally moving us up to the sixth floor in the pediatric specialties unit. When we left the intensive care unit all of the nurses were very sad to see him go. He was a popular little guy with all of the nurses and they couldn't stop talking about him and how cute he his (blessings that he got from his Dad). We now have our own private room with our own shower and bathroom which is very nice.
Caeden has done very well today and we have started to see signs that he is getting back to his old self. We were able to hold him several times today which was a lot of fun and I think Caeden enjoyed it as well. He was talking a little bit in the afternoon today and he also had a couple of smiles. He has been awake most of the afternoon and had his first poopy diaper in three days. This is a very good sign because it means that his small intestines are starting to recover and work again. Caeden will start being fed through an IV tonight and should be able to go back to breast milk in a couple of days.
Wednesday, January 20, 2010
Day after surgery
Caeden did well his first night in the PICU. After surgery Caeden was wide awake and very calm. He had a respiratory tube in his mouth when he came out of surgery. However, he let everyone know that he did not like the breathing tube and decided to push it out of his mouth.
He tried falling asleep but wasn't able to because he was in a little pain. The anesthesiologist made an adjustment to his epidural and his pain medicine. After they made the adjustment he was much more comfortable and able to fall asleep. Caeden has slept for most of the day today but has been awake a couple of times for a short period. We found out today that Caeden is allergic to the tape that they use in the hospital. He is allergic to the clear tape and the white tape that they use. His skin is red and irritated wherever the tape has been. Caeden's face is a little puffy from the IV fluid that he has been receiving but should subside in a few days.
We spoke with Dr. Lemon (Surgeon) and Dr. Mcloughlin (GI) today and they both said that he looked good and was doing well. They felt that he could be moved out of intensive care today. However, there were no available beds so we will most likely be staying in the PICU another night. Hopefully tomorrow there will be a room available for us.
He tried falling asleep but wasn't able to because he was in a little pain. The anesthesiologist made an adjustment to his epidural and his pain medicine. After they made the adjustment he was much more comfortable and able to fall asleep. Caeden has slept for most of the day today but has been awake a couple of times for a short period. We found out today that Caeden is allergic to the tape that they use in the hospital. He is allergic to the clear tape and the white tape that they use. His skin is red and irritated wherever the tape has been. Caeden's face is a little puffy from the IV fluid that he has been receiving but should subside in a few days.
We spoke with Dr. Lemon (Surgeon) and Dr. Mcloughlin (GI) today and they both said that he looked good and was doing well. They felt that he could be moved out of intensive care today. However, there were no available beds so we will most likely be staying in the PICU another night. Hopefully tomorrow there will be a room available for us.
Tuesday, January 19, 2010
PICU
Caeden's surgery went well and he will be staying in the Pediatric Intensive Care Unit tonight. The surgery lasted approximately 6 hours. The doctor tried to insert the dye into Caeden's gallbladder but his gallbladder was shriveled up from scar tissue. The doctor went ahead and removed his gallbladder for this reason.
Dr. Lemon said that he had a little trouble inserting his Broviac Central Line so that lengthened the surgery a little bit. The Broviac Central Line is basically a catheter that is inserted into the jugular vein of the neck and comes out through his chest. This line will be used to administer antibiotics for six weeks after the surgery. In addition, this line will be used to draw blood to monitor his health and recovery. Caeden will have the Broviac Central Line for many months and could be kept in for an entire year.
We will be in the hospital with Caeden for at least a week but could be up to 2 weeks. It all depends on how he is progressing. Caeden is being feed intravenously through the Broviac central line and will be fed this way for 3-4 days. At that point he should be able to go back to eating breast milk. He has a 6 inch incision along his abdomen where the surgery occured.
Dr. Lemon said that he had a little trouble inserting his Broviac Central Line so that lengthened the surgery a little bit. The Broviac Central Line is basically a catheter that is inserted into the jugular vein of the neck and comes out through his chest. This line will be used to administer antibiotics for six weeks after the surgery. In addition, this line will be used to draw blood to monitor his health and recovery. Caeden will have the Broviac Central Line for many months and could be kept in for an entire year.
We will be in the hospital with Caeden for at least a week but could be up to 2 weeks. It all depends on how he is progressing. Caeden is being feed intravenously through the Broviac central line and will be fed this way for 3-4 days. At that point he should be able to go back to eating breast milk. He has a 6 inch incision along his abdomen where the surgery occured.
Still in Surgery
Caeden is still in surgery and should be out around 4:00 p.m.. The nurse called us an hour into the surgery and said that the dye did not travel like they wanted. Therefore, the Doctor started the Kasai procedure which means that Caeden has Biliary Atresia.
Caeden will be in the hospital for 7-10 days and will eventually need a liver transplant.
We will post again once he is out of surgery and have more details.
Caeden will be in the hospital for 7-10 days and will eventually need a liver transplant.
We will post again once he is out of surgery and have more details.
Monday, January 18, 2010
Caeden's Surgery Scheduled For 10:50 a.m.
Caeden will have surgery at 10:50 a.m.. We will arrive at the hospital at 9:50 a.m. tomorrow and they expect to start the surgery about an hour later.
We hope and pray that God will work one of his miracles tomorrow and that Dr. Lemon will find the dye to travel through the bile duct to Caeden's liver and small intestine.
Please pray for Caeden and the Doctor's that will be performing the surgery.
We hope and pray that God will work one of his miracles tomorrow and that Dr. Lemon will find the dye to travel through the bile duct to Caeden's liver and small intestine.
Please pray for Caeden and the Doctor's that will be performing the surgery.
Wednesday, January 13, 2010
Surgery Scheduled for Tuesday 01/19
The results from the liver biopsy confirmed that bilirubin is stuck in his liver and not able to escape. Also, there is some scarring in the liver but the doctor doesn't know the extent of it. We met with the surgeon (Dr. Lemon) today and have surgery scheduled for Tuesday 01/19 and Caeden will be the first surgery of the day.
The surgeon explained the surgery to us and the different possiblities of what he might find. The Surgeon will make an incision just below the ribcage and insert a catheter into the gallbladder if the gallbladder exists. It is possible that the gallbladder has been damaged by scar tissue which makes the gallbladder shrink and dissappear. However, if the gallbladder exists he will inject a dye that he hopes will flow from the gallbladder to the liver and down to the intestine. If the dye flows like it should then the surgeon will not proceed any further because Caeden's condition can be treated by medicine. This is known to be called Biliary Hypoplasia.
If the dye does not flow from the gallbladder to the liver and through the bile duct to the small intestine then there is a blockage of the bile ducts. This means that Caeden has what is called Biliary Artresia. If this is the case then the surgeon will take the small intestine and connect it to the liver. This would extend the surgery to a 4-5 hour surgery. During the surgery the surgeon would also insert a catheter into the neck vein which would have a connection point in the chest to administer medicine that he will have to take for six weeks after the surgery. Caeden would have to stay in the hospital for 7-10 days to recover. The full recovery would be about 2 months. Also, if Biliary Artresia is the prognosis then this procedure would only work for an extended period of time. He will eventually need a liver transplant.
We will keep everyone updated as soon as we know more information.
The surgeon explained the surgery to us and the different possiblities of what he might find. The Surgeon will make an incision just below the ribcage and insert a catheter into the gallbladder if the gallbladder exists. It is possible that the gallbladder has been damaged by scar tissue which makes the gallbladder shrink and dissappear. However, if the gallbladder exists he will inject a dye that he hopes will flow from the gallbladder to the liver and down to the intestine. If the dye flows like it should then the surgeon will not proceed any further because Caeden's condition can be treated by medicine. This is known to be called Biliary Hypoplasia.
If the dye does not flow from the gallbladder to the liver and through the bile duct to the small intestine then there is a blockage of the bile ducts. This means that Caeden has what is called Biliary Artresia. If this is the case then the surgeon will take the small intestine and connect it to the liver. This would extend the surgery to a 4-5 hour surgery. During the surgery the surgeon would also insert a catheter into the neck vein which would have a connection point in the chest to administer medicine that he will have to take for six weeks after the surgery. Caeden would have to stay in the hospital for 7-10 days to recover. The full recovery would be about 2 months. Also, if Biliary Artresia is the prognosis then this procedure would only work for an extended period of time. He will eventually need a liver transplant.
We will keep everyone updated as soon as we know more information.
Tuesday, January 12, 2010
Biopsy Results
Hello Everyone,
We decided to start a blog to make it a little easier to keep everyone updated on the status of Caeden.
We will be meeting with Dr. McLoughlin tomorrow 1/13 at 11:30 to find out the results of the liver biopsy. We should also be able to schedule a time to meet the surgeon and maybe get a better idea of when the surgery might be.
We decided to start a blog to make it a little easier to keep everyone updated on the status of Caeden.
We will be meeting with Dr. McLoughlin tomorrow 1/13 at 11:30 to find out the results of the liver biopsy. We should also be able to schedule a time to meet the surgeon and maybe get a better idea of when the surgery might be.
Monday, January 11, 2010
Subscribe to:
Posts (Atom)