We keep getting hit with new issues left and right with Liam's health. Yesterday he had blisters on his face. It turned out to be contact dermititus. They put some cream on it and it was almost gone by morning. Yesterday we had to lower his feeds from 24ml's per hour to 16ml's per hour because he wasn't tolerating the feeds. His heart rate and respitory rate were too high all night long the night before. We had put him back on oxygen that night and it didn't take care of the problem so yesterday morning we lowered the feeds and within hours his heart rate and respitory rate went back to normal. We started mylacon drops and tylanol to help with gas and pain. This morning the specialist came in and gave us more news. They said the radiologist looked at Liam's xray and it appears his left lung (repair side) was stretched out during his repair surgery. Thats not good. It's also the reason his left lung appears twice the size of his right lung when his left lung was his underdeveloped lung. I had asked that question many times since seeing his xrays here at Childrens. Now theyre trying to get ahold of Liam's xrays and CT from USCSF so they don't have to do another one. Theyre hoping the CT and xrays will help explain why and how this happened. Just when I think things are looking up, things go down hill. I'm really struggling with this whole situation. I know God only chooses strong parents for these babies, but the blow is still harsh. They say the first year is full of hard times. Struggles and hospital stays. Then after the first year things are supposed to be more "normal". We're only 3 1/2 months into this. If I'm struggling this much, I can only imagine how Liam feels. It's so hard being here at a hospital 24-7. So very depressing. I won't leave Liam alone for more than I absolutely have too. I feel like I have to be here with him. Going home for a day or two just isn't an option in my book. Home feels so empty without him there. It's hard having two kids when one is in the hospital. It's harder to choose who to be with knowing that the other one will be alone. I know Lanie is not alone but I know she needs me. She doesn't get near enough of my attention as she deserves. No matter what I do it feels like I can't win for trying. ......
The pulmanologist came in and she basically wanted to know if we planned to follow up with them or UCSF. I told her if we could follow up with them we will. She said ok because they were having issues with UCSF wanting to release Liam's medical records even though I signed the paperwork so she wanted to order a CT scan but refuse to do so if were just going to be following up with UCSF. Waiting for her to come back now to let me know. She wanted to know what the plan was for Liams high right side so I told her the plan was it had to be repaired. I also told her that Dr Jones said she could repaire it here at Children's. so our plan was to do it here. I just pray we can start having good news soon.
Mommy Confessional
Wednesday, November 2, 2011
10/29/2011
Liam is healing from his surgery. There were no complications. His lung did partially colapse yesterday but has since start re-inflating. He hasn't needed morphone since the night after surgery and has only been needing 1 dose of tylanol every 12-14 hours so far. I am very proud of him for being such a strong little boy. He was moved out of PICU today. Liam has slept most the day away again but he needs to to heal. He has only woken up to cry when his diaper was dirty or he felt hungry. Crying for food is an improvement already. It was like music to my ears. He hadn't been crying fo food lately because it hurt his belly everytime he ate. They're slowly weaning him off the oxygen/ We need to completly wean him off oxygen, get full feeds going and learn how to care for the Gtube as well as put one in ourselves before he will be released. We're looking at 5 days min unless they really try to rush him out. We refuse to let them rush him out the door though. I want to know that when we take Liam home that we will be staying home for while before we have to see another hospital again. .
10/26/2011
Liam is going in for surgery tomarrow around 1pm. He is getting a G-tube and a Nessen Fundoplication. Hopefully this will fix the problem and Liam will be able to hold down his foods. He got his first dose of Biotin tonight for his Biotinidase Deficiency and will continue to get it until we get the results back from his test. Theyre going to intubate Liam for surgery. Im not sure how Im going to react seeing a breathing tube in my son again. Too many memories of UCSF ICN. If they have problems excubating Liam then he will have to have it for a few days. It can also take up to 4 hours if there isnt any complications in surgery. If theres not a lot of scar tissue they will be able to do surgery laproscopically. Thats what Im hoping for. Praying little Liam is strong enough to survive this. Hes a fighter, even if he is weaker right now. All I want is for my baby boy to be good. I want him fixed. I want to take him home and enjoy the holidays without having to be in a hospital. Im trying really hard not to worry. I have no idea what Im going to do with myself for 4 hours while Liam is in surgery. I know right out of surgery I wont be able to hold him and that going to be hard. Im trying to keep myself from sleeping in the rocking chair all night with Liam in my arms. He needs a really good nights sleep so he can be strong. Were not exactly sure how much longer were going to be here. We know at least a week. I miss my cats, my house, my couch and my bed. You would think that this would get easier over time but its not. It seems to get worse with every taste of having my son home. I pray to God that we wont have to spend Thanksgiving or Christmas in the hospital. I know things could always be worse. Please pray for Liam.
10/24/2011
Ok we were misinformed it wasnt cystic fibrosis that Liam was positive for at birth like we were lead to believe. His retest for it was neg :) What Liam had at birth was called Biotinidase deficiency. Its very rare. Only 1 of every 110,000 births.Biotinidase deficiency is an inherited metabolic disorder of biotin (vitamin B) recycling that leads to multiple carboxylase deficiencies. The mos...t common early symptoms include seizure activity of various types (myoclonic, grand mal, and focal or infantile spasms) and hypotonia. Other early symptoms include breathing problems (tachypnea, hyperventilation, stridor, apnea), skin rashes and alopecia. Later developmental delays, speech problems, ataxia, and vision and hearing problems may occur. Less frequent findings include feeding difficulties, vomiting/diarrhea, fungal infections, hepatomegaly and splenomegaly. This disorder is inherited in an autosomal recessive pattern. As an autosomal recessive disorder, the parents of a child with biotinidase deficiency are unaffected, healthy carriers of the condition and have one normal gene and one abnormal gene. With each pregnancy, carrier parents have a 25 percent chance of having a child with two copies of the abnormal gene, which results in biotinidase deficiency. Carrier parents have a 50 percent chance of having a child who is an unaffected carrier and a 25 percent chance of having an unaffected, non-carrier child. These risks hold true for each pregnancy. All siblings of infants diagnosed with biotinidase deficiency should be tested. Biotinidase is an essential enzyme that liberates biotin from proteins in foods for utilization by the body. It also enables the body to recycle biotin, which is necessary for proper functioning of carboxylase enzymes. Without biotinidase to release free biotin, the ability of the body to alter fats and to metabolize proteins and carbohydrates is impaired. Complications including metabolic acidosis, coma and death can occur unless supplements of biotin are provided.
The good news is that this is something that can be treated with meds. Yes if he is still positive then he will have to take them for the rest of his life. We will have to have Lanie tested for it because they say all simblings need to be tested because if one kid has it its possible another has it as well. He will also have to see a geneticist regularly. I feel better with this diagnosis than with cystic fibrosis. No Im not happy but it is what it is. Ive done some research and Im sure theres more to it than what I've read online. Childrens hospital is waiting on paperwork they need from UCSF before they can re-test Liam. Apparently we are about 2 days over due in retesting Liam but they didn't know about it and we didn't either. The doctor found all this out when he finnaly got ahold of the results of Liam newborn screaning test. Theyre going to talk to the surgeons and hopefully this test wont delay Liams surgery. Were hoping to keep things on track.
On a good note, Liam had some visitors tonight. His Tia, Uncle, Cousins, and Auntie Jolene came to visit It was a great visit and I got some pretty cool pics :)
The good news is that this is something that can be treated with meds. Yes if he is still positive then he will have to take them for the rest of his life. We will have to have Lanie tested for it because they say all simblings need to be tested because if one kid has it its possible another has it as well. He will also have to see a geneticist regularly. I feel better with this diagnosis than with cystic fibrosis. No Im not happy but it is what it is. Ive done some research and Im sure theres more to it than what I've read online. Childrens hospital is waiting on paperwork they need from UCSF before they can re-test Liam. Apparently we are about 2 days over due in retesting Liam but they didn't know about it and we didn't either. The doctor found all this out when he finnaly got ahold of the results of Liam newborn screaning test. Theyre going to talk to the surgeons and hopefully this test wont delay Liams surgery. Were hoping to keep things on track.
On a good note, Liam had some visitors tonight. His Tia, Uncle, Cousins, and Auntie Jolene came to visit It was a great visit and I got some pretty cool pics :)
10/23/2011
Just talked to the surgeon. They want to run some test before they do surgery. Another ECO of his heart, blood work, re-test for cystic fibrosis since he was positive at birth and a few studies on his lungs and airway. They said they'll try to do it microscopically but if theres too much scartissue theyll have to open him up. They might have to re-intubate him and she said it could be hard to excabate him so he might stay on it for awhile. Itll be hard to see but they have to do what they have to do. They just want all the ducks in a row and have no suprises like hyper tention or anything else. :( They said they might have to put off the surgery for 2 weeks if he is still sick. The first time I got to see my son he was intubated. It was the image that poped into my head when the surgeon mentioned it as a possibility. I felt like we were taking atleast 3 steps back just with his respitory problems. If it came down to intubating Liam and having him crash suddenly during surgery its an obvious choice. Situations like this just don't help my PTSD. I know I need to be strong for Liam and for Lanie and for Justin so I have to keep it together. I know eventually we will get to the point that this will all just seem like it was a nightmare. It feels like a dream that we even had him home, like it didn't even happen. We were blessed that we got to take him home though. We are blessed to have every day we have with him. Liam is a fighter and he will fight to the very end. The statistics for people with cystic fibrosis suck. They're life expactantcy is 30-40 years and 95% of males with cystic fibrosis are infertile. Then again there's no telling how long a CDH baby will live. Theres no reason to think they can't live a long happy life but there are too many unknowns. Again Liam is a fighter and it doesn't matter what he has. He won't give up and neither will we. We will love him his entire life and hopefully, if God willing he will outlive us. I am happy we have answers. I am happy we have a "solution". With the world of technology these days theres no reason to think the worst. I know that we're going to celebrate everyday and every smile. We're going to make sure he lives as normal as a life he can and that he is happy and painless. I know I will continue to tell his story in hopes that it helps someone else and get out awareness. Being a mother of a baby with Congenital Diaphragmatic Hernia has changed everything for me. It's not an easy road. It's a long, hard, dark road we have ahead of us but Liam's smile gives me the light I need to see the end.
10/22/2011
I find myself completely pissed off. We just found out from Liams specialist doctor at Childrens Hospital that in her conversation with UCSF Pedi-Surg that UCSF said they thought he needed a Gtube that they were going to talk to us about it on our next CDH clinic in November. Basically they werent going to give us a heads-up; they were just going to ambush us. The doctors I thought I had an open communication and good relationship with and were supposed to trust. I feel like that trust has been broken. We told them several times before they released Liam the last time to do whatever they had to do to fix Liam so we didnt have to put him through this again. They just went ahead and released him already suspecting that he needed a Gtube. What makes it worse is that if they would have just kept Liam 2 more days then this would have already been done. We wouldnt have wasted 10 days at Childrens trying to figure out what was wrong. With a critically ill infant you dont have time. Liam was already way under weight and length that he is failure to thrive. Liam doesnt have any weight he can loose. I feel like Liam is a guinea pig for UCSF that they just want him for research and instead of doing whatever they had to to make him better theyre experimenting instead of jumping straight to the problem solver. Keep in mind I absolutely love UCSF. They know what their doing, they know his case. My problem is with the communication. All Ive asked over and over again was that they keep us updated and they do whatever they have to fix him. So maybe Im not mad but more disappointed. We also found out today that Liam needs a fundoplication. They take the top of the stomach and wrap it around the esophagus to keep him from being able to reflux his food. Theyre going to do this the same time they do the Gtube procedure that way they only have to put him out once and only recover once. I know its whats best for him. I know he needs it. Ive done the research and talked to the doctors. The mommy in me just wants to cuddle him close and cry with him. The analytical part of me wants to hand him over and say fix him. Its a good thing he can have the best of both because not only do I get to cuddle him and love him but I get to make them fix him.
About fundoplication:
In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter. The esophageal hiatus is also narrowed down by sutures to prevent or treat concurrent hiatal hernia, in which the fundus slides up through the enlarged esophageal hiatus of the diaphragm.
In a Nissen fundoplication, also called a complete fundoplication, the fundus is wrapped all the way 360 degrees around the esophagus. In contrast, surgery for achalasia is generally accompanied by either a Dor or Toupet partial fundoplication, which is less likely than a Nissen wrap to aggravate the dysphagia that characterizes achalasia. In a Dor (anterior) fundoplication, the fundus is laid over the top of the esophagus; while in a Toupet (posterior) fundoplication, the fundus is wrapped around the back of the esophagus.
The procedure is now routinely performed laparoscopically. When used to alleviate gastroesophageal reflux symptoms in patients with delayed gastric emptying, it is frequently combined with modification of the pylorus via pyloromyotomy or pyloroplasty.
The mortality rate is less than 1% which is the best odds Liam has encountered in his life. I am still very scared because I know how fast things can go wrong. I am trusting in God that he will be right there with Liam every step of the way and keep things on track. I am still requesting prayers for Liam. I am a firm believer that prayer works and there is never too much prayer. Please find it in your hearts to just send up a little prayer for Liam.
About fundoplication:
In a fundoplication, the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter. The esophageal hiatus is also narrowed down by sutures to prevent or treat concurrent hiatal hernia, in which the fundus slides up through the enlarged esophageal hiatus of the diaphragm.
In a Nissen fundoplication, also called a complete fundoplication, the fundus is wrapped all the way 360 degrees around the esophagus. In contrast, surgery for achalasia is generally accompanied by either a Dor or Toupet partial fundoplication, which is less likely than a Nissen wrap to aggravate the dysphagia that characterizes achalasia. In a Dor (anterior) fundoplication, the fundus is laid over the top of the esophagus; while in a Toupet (posterior) fundoplication, the fundus is wrapped around the back of the esophagus.
The procedure is now routinely performed laparoscopically. When used to alleviate gastroesophageal reflux symptoms in patients with delayed gastric emptying, it is frequently combined with modification of the pylorus via pyloromyotomy or pyloroplasty.
The mortality rate is less than 1% which is the best odds Liam has encountered in his life. I am still very scared because I know how fast things can go wrong. I am trusting in God that he will be right there with Liam every step of the way and keep things on track. I am still requesting prayers for Liam. I am a firm believer that prayer works and there is never too much prayer. Please find it in your hearts to just send up a little prayer for Liam.
10/21/2011
Childrens's Hospital doctors consulted with UCSF Surgeons and they decided Liam needs a Gtube. A Gtube has the same concept as an ngtube. it goes straight to the stomach. The difference is it is surgically inserted through the abdomen wall into the stomach. The reason were doing this and not sticking with the ngtube is because with the ngtube there is a chance of his tube migrating up and slipping back down and going into the lungs. That would be very bad because then his feedings go into the lungs drowning him. He needs to be on continuos feeds 20 hours out of 24 hours in the day because of his gastritous and reflux. Its alot safer and allows us to give him the callories and volume he needs to grow. Please pray for Liam he will be having surgery sometime next week. We thank you all for your prayers and support.
************
Dear Santa,
Its been a rough year and I feel Ive been good. Everything seems to be breaking around me. My truck, my dryer and my son (to some extent) are just a few examples. I feel Ive handled it all very well so I should be rewarded. Santa this year for Christmas I just want something that works. If I could choose one thing to work I would without a doubt or second thought choose my son. I will gladly forfeit all future Christmas, birthday, mothers day, anniversary and any other gifts for the rest of my life for this one gift. Being said, I feel that such a selfless act should not go without reward and feel I should be able to choose that reward. I choose my son. I dont need any fancy wrapping, no bows, or streamers. No bling or glitter. I dont even need it to be under the tree when I wake up Christmas morning. So please Santa, just this once, grant me my wish.
-Liams Mommy
P.S.
If I promise to be good every year would you find a cure and answers to CDH?
************
Dear Santa,
Its been a rough year and I feel Ive been good. Everything seems to be breaking around me. My truck, my dryer and my son (to some extent) are just a few examples. I feel Ive handled it all very well so I should be rewarded. Santa this year for Christmas I just want something that works. If I could choose one thing to work I would without a doubt or second thought choose my son. I will gladly forfeit all future Christmas, birthday, mothers day, anniversary and any other gifts for the rest of my life for this one gift. Being said, I feel that such a selfless act should not go without reward and feel I should be able to choose that reward. I choose my son. I dont need any fancy wrapping, no bows, or streamers. No bling or glitter. I dont even need it to be under the tree when I wake up Christmas morning. So please Santa, just this once, grant me my wish.
-Liams Mommy
P.S.
If I promise to be good every year would you find a cure and answers to CDH?
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