7 MONTHS OLD

It's hard to believe now that Caeden is 7 months old! Caeden has been doing great and is a healthy little boy! Denae and I have had so much fun with him and enjoy spending every minute we can with him.

We thought we would give everyone an update on what we have been doing the past couple of months.

Caeden got dedicated to the church on Mother's day. Caeden gave his mom a shirt with his hand print on it that says, "World's Best Mommy!"

For Father's day, my Mom and Denae took Caeden to get professional pictures taken. They came out great. Denae and Caeden made a collage of pictures and framed it so that I could take it to work with me and hang it up on the wall.

Also, we started feeding Caeden baby food and just started feeding him the 2nd stage of baby food. He has liked most of everything except green beans. His dirty diapers have started to have some strong smells and we have been told that it only gets worse from here on out.

Caeden has been healthy ever since he got his Broviac tube out. He is still a very happy baby and loves to smile and laugh. He is turning over from his back to his stomach and vice versa. He looks as if he could start crawling soon. Caeden can also sit up on his own. We give him a bath every night and he just loves to sit and relax in the warm water.

Unfortunately, Denae will be heading back to work on August 12th to start teaching again. This is going to be a hard transition for us. Thankfully, we have family that is able to take care of Caeden during the day so that we don't have to take him to daycare. Denae's mom will be the main one taking care of Caeden. My mom will be taking time off as much as she can to help out as well.

We have had an incredible amount of support with Caeden and his health issues. Everyone has been great including all of the staff at Double Eagle and Dennis Chavez Elementary Schools. One of the parents of Denae's students started a donation account for Caeden's medical bills. The account is at Wells Fargo Bank. Anyone wishing to donate to Caeden's fund can go to any Wells Fargo bank nationwide and write a check in his name and it will deposited into his account.

No More Broviac!

Caeden had his Broviac central line removed on Thursday. He still had one day of antibiotics left so they put in an IV so we could finish the antibiotics. The reason they removed it when they did is because if it wasn't Thursday then it would have been the end of May before they could have removed it.

We were able to stay in the room when they removed Caeden's line. It was a very quick procedure and they gave Caeden a local anesthetic only. They put a patch over the hole and said we could remove it on Saturday. We went back Friday afternoon to the hospital so they could remove the IV.

It is so nice to not have to worry about the central line anymore. Denae and I are looking forward to giving Caeden his first REAL bath! We have only been able to give him sponge baths up to this point because of his line. When we give Caeden his first bath I think we will just let him play in the water for as long as he wants because I am sure he is gonna love it.

Caeden has been doing great and developing quite the personality! He is a very happy baby and smiles all the time. We looked forward to him staying healthy and spending quality time with him at home.

Home Once Again

We were released from the hospital on Monday. We are giving Caeden antibiotics from home three times a day. Caeden has been doing really well and all of us are thrilled to be at home and sleeping in our own beds. Denae is able to get Caeden to giggle out load by kissing his neck and it is very cute to hear. He is back to himself and is a happy little guy.

We go back on Monday to see Dr. Mcloughlin for a follow-up appointment. She will probably have the nurses draw some blood to see where his levels are at and to make sure that they have continued to go down. On Tuesday, we will be taking Caeden to the pediatrician to get his 2 month shots. We are a little behind on his shots due to the multiple hospital stays and him being sick. We are a little nervous for Caeden to get his 2 month shots because they typically cause a fever and I am sure he will be fussy for a day or two.

Easter & Hospital

Caeden was able to be home for his first Easter. We were released from the hospital on Good Friday. The Easter bunny made a surprise visit to see Caeden in the hospital. We spent Easter Sunday with both sides of the family and had a great time. It was so nice to be home once again and be with family. We were able to get all of the cousins together from the Hauquitz's side and take pictures in their matching outfits. Caeden got some new outfits from the Easter bunny which was very exciting.

Unfortunately, on Tuesday morning Caeden got a low grade fever. We went in and saw the doctor, they took some more blood tests and sent us home. We came back the next day so they could repeat the blood tests. Caeden still had a low grade fever on Wednesday night. He was very fussy and not his usual self. We contacted our pediatrician on Wednesday night and scheduled an appointment on Thursday morning. We wanted to rule out any basic or common sicknesses. The pediatrician tested him for strep throat and looked him over. The strep throat test came out negative however his fever had gone up to 100.9. Therefore, our pediatrician sent us back to UNM hospital. We were admitted in the hospital on Thursday night due to his elevated levels from the blood tests. They started him on the same antibiotics that he has previously been on. On Friday morning Dr. McLoughlin started him on a different antibiotic that is more specific to treat cholangitis. She feels that the last time he got cholangitis it was not fully cured. We will hopefully be released in a couple of days and can administer the antiobiotics at home. Caeden will be on this antibiotic three times a day for three weeks.

Due to our multiple hospital stays we have gotten to know many of the nurses in the general pediatric unit as well as the specialty pediatric unit. Everybody loves Caeden and now they all fight to get Caeden as a patient and take care of him. When we walk into the unit everybody acknowledges us and says hi. All of the nurses can't believe how big he has gotten and they enjoy seeing him get older and grow.

Home Again

The results came back from the biopsy yesterday afternoon and Caeden does not have Cholangitis. The doctor said his liver looked good.

Therefore, we were discharged from the hospital. We set up an appointment with Dr. Lemon for Thursday 04/08 to schedule the removal of Caeden's Broviac central line. Since the biopsy results didn't show anything the doctors are directing their attention to the central line as the source of Caeden's fevers. We hope and pray that Caeden can stay healthy long enough to get his line out.

Update

We have fallen behind on posting recently be we have finally gotten around to giving everyone an update.

We were admitted into the hospital on Wednesday 03/17 because Caeden had a fever. Caeden had gotten the Synegis shot for RSV on Monday when the home care nurse came to change the dressing around the Broviac. Caeden got the fever on Tuesday and we were told that he might get a low grade fever due to the shot. He hadn't gotten any better by Wednesday and we actually had a follow up appointment with Dr. McLoughlin on that day. Our Doctor told us that the Synegis shot shouldn't cause a fever and she immediately admitted us. They did multiple blood tests and blood cultures but nothing showed an infection. Therefore, the doctors never found the cause of the fever and we were discharged on Tuesday 03/23.

Caeden was doing great at home until he contracted another fever on Monday 03/29 at 12:30 am. We called the GI doctor on call and he told us to go straight to the emergency room and that he would notify them that we were on our way. Denae and I packed our bags to prepare for another lengthy stay at the hospital and then left for the hospital. We arrived at the ER around 3:00 am. Thankfully, the ER was not busy at all and we got right in and they started giving Caeden antibiotics. They took a blood culture and did a urine test. We were only in the ER for about two hours and then they moved us up to the sixth floor in the Pediatric Specialty Care Unit. Once again they took multiple blood tests and nothing showed up. The blood cultures aren't growing any bacteria either. Our doctor is frustrated because she does not know what is wrong and why Caeden keeps getting fevers.

Therefore, Dr. McLoughlin scheduled to do a liver biopsy today. She is hoping that by doing this operation it will provide her with some answers. We had to go down to ultrasound around 11 this morning so that they could mark the exact spot where Dr. Mcloughlin needed to insert the needle. This step is crucial so that there won't be any main blood vessels that are in the way that could be punctured which would cause internal bleeding. We took Caeden down to the OR at about 12:30 and they took him in for the liver biopsy. We were able to go back to the recovery room around 1:30. Caeden could not eat for another 4 hours after the biopsy due to the risk of bleeding which made it a hard 4 hours. However, Caeden did really well and was a trooper. When 5:30 came around Caeden sucked down a bottle and was much happier.

We should hear some results tomorrow from the biopsy and find out what the next step is. We will post again once we have more news.

FREEDOM!

We finally were discharged from the hospital after 3 weeks! Denae, Caeden and I were so excited when we got released at around 10:00 am. We had developed some very good relationships with some of the nurses at the hospital and they all cheered when we walked out. The nurses were sad to say goodbye but also very happy that we were being discharged. They all said they were going to miss Caeden. Denae and I learned that our son is already starting to flirt with the girls!

Caeden was originally admitted into the hospital with a line infection and then this past Monday we found out that he had developed a condition called cholangitis. He is on an antibiotic called Zosyn. We have to administer this three times a day over a period of about 30 minutes each time. After his 14th day of treatment we will discontinue the antibiotic and hopefully he will not have to go back on any antibiotics any time soon.

Thank You all for all of your continued support and prayers through this very difficult time. Everyone has helped us stay positive throughout this and while in the hospital. Caeden only looked sick when he had his fevers and other than that you would never be able to tell that he has this progressive liver disease.

Denae and I were able to see Caeden's personality prosper while in the hospital. He has become very active and loves to lie on his back. He likes to move his legs and arms really fast. When he wakes up in the morning he is always very happy and loves to smile. He has the biggest smile!

Still in the Hospital

Last week after Caeden's initial fever he started to get better and was doing really well. The blood cultures that they drew on Monday 02/15 took until Friday 02/19 to show a bacteria called micrococcus growing. There was also another type of bacteria that grew from that culture but we do not know the name of that bacteria. Therefore, it confirmed that Caeden had a central line infection. The Doctors put him on an antibiotic called vancomycin to get rid of the infection. He was also put on another antiobiotic call cephalexin. We were going to be released from the hospital Friday morning (02/26) because then he would have finished a full 10 day treatment of antibiotics.

Caeden had a visit from his grandparents on Thursday (02/25) evening and was doing good until right before the grandparents left. He seemed warm so we checked his temperature and he had a fever. We informed the nurses and then put a cold cloth on his forehead to see if that would help reduce his fever. Caeden was given Tylenol around 8 pm to help with the fever but that didn't help at all. He was very fussy and then we noticed that he started to shake and quiver so we notified the nurse. The nurse was calm but seemed concerned when we told her that so she left the room to call the pediatrician that was on call. The pediatrician showed up very soon after that to check him out. Caeden's heart rate was elevated and was in the 220's where the normal range should be about 140. His blood pressure was high and also his pulse rate. The pediatrician ordered the nurse to bring in a couple bags of fluid to give him right away. Then the pediatrician walked out without saying anything. The nurse informed us that they called the rapid response team from the PICU(Pediatric Intensive Care Unit). In a matter of about 5 minutes we had 9 people in our room. It consisted of nurses, charge nurses, and the attending physician and resident physician.

Denae and I realized how serious this was and how sick Caeden was. Caeden's temperature was over 103 degrees and he had a look that they call modeled. This means that his color has changed and that his veins are very evident. They gave Caeden 80 cc of fluid directly into his broviac thru an enormous syringe. The attending physician said if his condition didn't improve very quickly then they were going to move us down to the intensive care unit. They gave Caeden more Tylenol as well and also put him on a different antibiotic. The concern was that he had a yeast/fungus infection. They drew another blood culture as well. His condition improved but it took awhile for his fever to break. This was one of the scariest things that Denae and I have ever been through.

Thankfully, Caeden has been doing well since then and hasn't had another fever. He has slowly been getting back to his normal eating consumption. The blood cultures so far have come out negative. The Doctor's are considering removing his central line due to the infections he has gotten but are weighing the pros and cons of this. If the culture ends up showing a yeast/fungus infection then they will definately remove his central line because it is too dangerous to leave it in.

Back in the Hospital

Monday morning at 3:30 a.m. Caeden woke up because he was hungry and when Denae picked Caeden up he felt really warm. Denae took Caeden's temperature and it was 103 degrees. Denae still fed Caeden and then woke me up to tell me. Caeden was bundled up all night so we thought that maybe he was warm because of that (wishful thinking). Therefore, we took the blanket off and unzipped his outfit to see if his temperature would go down. However, that didn't help so we decided to head to the emergency room at UNMH.

We arrived at the emergency room and were seen right away. They took blood from his broviac and also poked him and took blood from his hand while putting an IV in. Then they did a chest X-ray and a lumbar puncture to rule out meningitis. Both of the blood cultures take 24 hours for an initial report to see if bacteria grows and a full 72 hours for a full report. They were trying to get us a room in the general pediatrics department but the hospital was packed. This resulted in us being in the ER for 14 hours while waiting for a room. Finally, we were transferred to a room at 10:30 pm.

Caeden has been put on a stronger antiobiotic than what we were giving him at home. The first report on the blood culture was negative which was great news. However, at 2:30 this morning the nurse informed us that the blood culture from Caeden's Broviac came back positive and he has an infection which was what caused the fever. He has a staff infection in his central line.

We spoke with Dr. Mcloughlin this morning and she said that she needs to give the blood culture another 24 hours to see exactly what kind of bacteria grows so that she can narrow the infection down to something specific. Once she knows this information she will know how to treat the infection. We will probably be in the hospital for at least another couple of days but it is hard to know the extent of our stay at this point.

Caeden has been doing really well since his last fever. He has been eating very well and has been smiling and talking a bunch. He is a pretty resilient little guy.

Caeden at Home

Well, it has been awhile since we have posted but we have been trying to get settled back at home. We now have a home care nurse that comes once a week to change Caeden's cap on his Broviac and also the dressing (tape & gauze) around the tube where it enters through his chest.

Denae has to give Caeden quite a few different types of medicine throughout the day. He has a total of 5 medicines that we have to give him. One of the medicines has to be given 4 times a day and a couple of the others are twice a day. Denae has been very good at administering these medicines. It has been a challenge for her due to the fact that she has to do it by herself during the day because I am at work.

We have seen Dr. Mcloughlin (GI) and Dr. Lemon (Surgeon) since we have been out of the hospital. They were both very satisfied and happy with Caeden's recovery. They took blood at our appointment and we found out after wards from the nurse that his bilirubin levels have come down drastically and now are in the normal range. The only concern from Dr. Mcloughlin was Caeden's weight. Caeden had not gained any weight since leaving the hospital. His weight just before we left the hospital was 8lbs 5oz. However, Denae went to the pediatrician today and his weight as of today was 9lbs 1oz. This was great news and means that we shouldn't need to supplement his diet at all with formula.

We go back to Dr. Mcloughlin next Wednesday and will keep everyone updated on his progress.

Home Sweet Home

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.

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.

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.

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.

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.

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.

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.

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'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.

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.

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.

Birth Day