Monkey See, Monkey Do

Liam woke up friday morning sick, just like Lanie had the day before. Lanie woke up perfectly fine. Lanie recouvered from her sickness in 24 hours. Today is day 3 for Liam. We are doing all we can to keep him home. Nausia meds are given every 6 hours. This morning we had to start him on pedialyte. Hopefully Liam will be able to handle feeds later. We thought giving pedialyte would reset his system, maybe help flush out the sickness. He has continued to retch and vommit the same as on formula. We know its not the formula, just a stomach bug. Tomarrow he goes to the pediatrician and hopefully we can figure something out to help him. We dont want our family torn apart so soon after we just got it back together. Its stressful and depressing.

Home Again

Yesterday late afternoon, Liam was suprisingly discharged. The doctor said he was gaining weight on 24 cal Neocate Jr and saw no other reasons to keep him. We are very happy to be home ofcourse but there are a few unresolved issues. They never did the test to find out if this was a metabolic issue or a GI issue. He tolerated to their liking so they kicked him. I hope that doesnt come back to bite us in the rear. Liams enjoyed being able to roll around on the floor and play with all his toys and laugh at the cat and his sister. Today Lanie is being confined to her room because out of nowhere, with no warning she just starting vommiting. After getting her cleaned up I sent her to her room to rest, then had to clean up the mess all over the kitchen. That was around noon. As of 5:08p she hasnt been able to hold down medicine or even water. Only good news is that she isnt running a fever. Hopefully this is just a 24 hour bug. Were going to give her some 7up in hopes that it will settle her stomach. If she holds that down shes gettiing chicken broth. Please say a prayer that she gets better soon and that Liam doesnt catch whatever it is she has. Thank you everyone.
 

Shooting For Liam Fundraisers

Shooting for Liam had several fundraisers going right now.

1) UpperCase Living Party
Our good friend Cecile Phillips is an UpperCase Living consultant and she has opened up a party for benefit Shooting for Liam. UpperCase Living has great products.
Just visit her site http://cphillips.uppercaseliving.net
Click on Products
Click on Associated with Open House
Then Choose "Shooting For Liam"
A portion of your purchase will be donated to Shooting For Liam to help spread CDH awareness.

2) Awareness Bracelets
We are selling rubber teal bracelets embossed to say "SHOOTING FOR LIAM CDH AWARENESS". They are $6 each and free shipping. We are accepting PayPal only for these. Please allow 3 weeks for delivery. Just email shootingforliam@yahoo.com with your order and we will sent you a PayPal invoice.

3) Our good friend Cecile Phillips is also selling 4x6 car decals featuring a teal ribbon and says CDH. She will be donating $2 for every decal sold to Shooting for Liam. Each decal cost $16 and includes tax, shipping and handling. To order message her on her facebook page http://www.facebook.com/cecile.phillips.3

4) We are still asking for donations of teethers for the Teethers for Teethies drive to benefit children at Childrens Hospital Central CA. Donations will be dropped off on October 17th. If your interested in donating please email shootingforliam@yahoo.com

Taking Time

After finding out this morninhs news that not only was Liam not up to their calorie goal, but not even on a JR formula and would not be going home for several days, I had to face my anxiety, anger and pain. I took a few breaths and realized I wasn't being rational. After reacessing the situation I came to the conclusion that I needed clean clothes and a break from the hospital. I have been giving advice to other families that theh need to take time for themselves but I couldn't ever bring myself to do it. Be proud of me because it was hard on me. I took the 45 min drive home, thankfully I still had my MIL's car, and I did laundry, gathered more food and a blanket. I spent time with my daughter and husband, then they drove me back to drop me off. I stole a million hugs from lanie and told her a trillion times how much I loved her. Got to hold my cat and feel him purr. He sat in the window with a sad face as we backed out of tge drive. We even spent 2 hours at the hospital as a family just laughing and playing. Liam had really missed his daddy and sister. I was gone a total of 5 1/2 hours. I fought the urge to call and check in every 5 min. I knew theyd tell me he was fine even if he was upset anyway. It was a much needed break and I brought a blanket because if i have to sleep on a hard as rock 1ft wide couch pull out, atleast id have comforts of home with my own blanket. My spirits have been lifted. This morning my status said that today was a good day and I made it a good day <3

Hospital Admittance #13 Day #8

Today Liam and I cuddled, rolled the ball back and forth, watched Thomas the train and laughed our booties off. We started feeling "normal" like we werent in a hospital when the PCT came in to take vitals and crush our fantasy. We actually had 5 min of normal bliss and it was amazing. We met a new doctor today. Depending on how the specialist want to do things we may or may not be released from our jail cell (hehehe). This evening we did have a bump in the road. Liam had a 10 min retching session yhen a few hours later a poopy diaper where the poo was pure water. Dont know what to think of this. Is it wrong of me to hope that we can figure all this out as outpatient? I havent complained out being here but I gotta say, i only have enough clean clothes for maybe 2 days, 3 max. I dont even have body spray with me to spray down the dirty clothes if i had no choice but to wear them. You gotta admit the fact that weve been here 8 days and i stioo have sone clean clothes is pretty good planning and packing on mu end. Only thing I left behind that im finding it really hard to go without is lanie. Maybe I should have packed her instead lol. I know we didnt get any real answers, but ive learned to deal with that. I did however come up with the idea that maybe because of his hiatal hernia sliding moving tye nissen above his diaphragm that maybe it moves up and down irritating him and causing tue retching. When I asked the doc she said it was very possible. Atleast we have an idea of what it could be. Sent from Yahoo! Mail on Android

Metabolic issues

Had a great visit with Aunt Rose, Uncle Cliff, Pastor Mark, Lanie, Kayla, laura, Andy, and Bella today. We needed the break. Liams food allergy test came back negative. No allergies to lactose or anything else. After talking to GI they came to the conclusion that this is a metabolic issue. Now the metabolic specialist are being called in to consult and come up with an idea. Prayfully they will find it soon. Sent from Yahoo! Mail on Android

Todays Picc line procedure

It took and hour and 50 min and 5 tries to get liams picc in. She had to use a neonatal, usually used in newborn to age 3months. Liam has alot of scar tissue and other issues that were preventing her fron getting in the picc. Her last shot was a neonatal. She said that its now documented that a picc will not work for Liam after thus one comes out. In the future he has to have a medi-port. She told me to refuse peripheral ivs and piccs because it was just torture on him. She also said that if the docs try to say no and fight it I am to request a patient rep. Liams arm is sore. We are also experiencing problems with the picc. Because of the scar tissue and veins and the tiny size of the picc it gets occludded quite often causing tge machine to go haywire. After a short time it resolves itself. We also have to go at a very slow rate,only 26mls per hr, because of the size and they cant do blood draws fron it because its smaller than a blood cell and scrambles the blood. Essentially its only working half assed at best. And because it goes so far in, my fear is what wiol happen when and if it stops working. The internal end is right above the heart. Liam was really cranky for a few hours after he woke uo from anethesia but finnaly gave in and fell asleep. They also started the 3rd new formula at quarter strength 10mls per hr. 26mls of iv fluids per hr isnt enough to keep little lamb properly hydrated. I am frustrated and feel like that was a waste that they should have done something thats going ti work but atleast I now have documentation to prove a medi-port is what Liam needs.

Acidic blood/dehydration/non-tollerance/mediport

Liams having a bad day. He stopped tollerating the new formula we started last night this morning. He was off fluids for only 4 hours but hes already dehydrated and lathargic. His urine started smelling like poop. I just talked to the doctor and its worse than I thought. Liams blood is turning acidic causeing the lathargia and the quickening dehydration The doctor is doing a urine culture, stool culture and blood gas. His blood is thick. He is getting a picc line since hes impossible to get an iv in. The plan for the rest of today is to start iv fluids and stick with pedialyte. Tomarrow if hes feeling better, theyll try another formula. Soy based. Between all this, the coughing and sneezing that started this morning id say this is a food allergy. If his test is negative and it turns out as only an intollrrance than I dont want to know what an allergic reaction does to liam. 9pm Theyre going to try to put a picc line in tomarrow at 2p. The picc line nurse asked me if I was holding up the process of getting Liam a medi-port. I said heaven no that Ive been fighting for one. She said she had reviewed liams case and hes better suited for a medi-port but the doctors are saying no. I teared up and said ive been arguing for one that I knew he needed one. She said the problem with kids getting poked all the time is not only that their veins blow but the scar tissue. I already know he has a ton of scar tissue because they commented on that this morning during blood draw. She said she will use ultrasound to look but doubts she find anything. She also said she would note on his chart that if he come back within a month that she refuses to do a picc that he needs a medi-port. Shes frustrated and see hows frustrated I am. Then around 7:45p Liam woke up retching and crying. Hes on pedialyte only and we have to work through it until he gets a picc line tomarrow for iv fluids. Im praying this is just a remainder from Liams bad reaction to the formula. I cant explain to you exactly how frustrating all this is. Its like a mountain just fell in our way. Things happen for a reason though. We dont always understand why and without faith we feel completly lost and dissoriented. I do feel lost in the dark right now but Im keeping faith. Or trying my darndest too. That light at the end of the tunnel, i cant see it but i believe its there. Poem by me witten 5/16/12 Stuck in a maze Cant find a way out Every turn is a dead end No way out in sight The rules dont apply In this labrynth of our lives No true path to follow No guide books have been written No clues to solve the mystery Its confussing and frustrating Infuriating and cruel Our lives are no longer our own Never will we be the same as before I wrote that when I had Liam up at UCSF. He had been medi-vacced from Childrens there because everyone thought he needed his right diaphragm repaired. When he got there they were baffled. Liam recouvered quickly only to make a downward spirl a few days later. This is when he was sent home on oxygen. I was told by the surgical team, the CDH specialist, that Liam was a mystery. That he didnt even fit into the CDH "normal" and they didnt know what to make of him. I was used to hearing that from regular doctors, but felt the specialists should know. I was completly upset and lost. I felt that if they didnt know what to do, no one would. Since then Liam has continued to baffle the doctors. He suddenly stops tollerating feeds, or meds even after months. He gets sick without a cause they can find. He keeps the doctors on their toes. What baffles them the most is Liams ability to smile when they feel he shouldnt be able too. Its taken awhile for many doctors to realize that Liams smile is decieving. That when he stops smiling hes worse than they would ever ley a kid get. CDH leads us on this crazy journey that test us at every turn. Problem is with most CDHers, CDH is only the begining of their problems. CDH can accur by itself or more commonly in association with another defect. We have yet to figure out all of Liams so called defects, we might not ever know. To us Liam is Liam. Our little lamb with a grin that melts hearts. One day the suffering will end. We wont ever laugh when looking backing on this, but maybe we will understand better. Sent from Yahoo! Mail on Android

Pergatory

Id like to say things are going great but the truth is they aren't, that we really have no idea whats going on. We're still waiting for the blood cultures and viral panel. Yesterday we lost Liams IV. The doctor decided to start him on pedialyte instead of searching for another IV. She knows how hard a poke Liam is. Since starting the pedialyte Liam has retched a handfull of times. This morning he was acting like his stomach was hurting. His tube site has been bleeding from new granulation tussue. Yesterday Liams chunky leg got stuck in the crib railing. He was trying yo play with the IV pole and stuck his leg out past him knee and got stuck. Props to him for not crying or freaking out. When I couldnt get it out I got the nurse. When she couldnt get it out she ran out for help, asking for lotion. 10 people came running into the room. 8 of them doctors. With the aide of barrier cream we got Liams let unstuck. I didnt freak out because Liam gets stuck in the crib at home all the time. All we have to do is pry the bars just alittle and it comes right out. His crib at home is wood though and the one here is metal. I was starting to think theyd have to call the fire department to cut him out. An hour later after we cuddled and played, I returned him to his crib for him to try it two more times. After that the nurse tracked down a exersaucer for him. Per doctor orders he also went around butt naked for an hour and a half. He had a diaper rash and felt it needed to be aired out before we used anything. Ofcourse Liam was tired and I had to rock him to sleep, butt naked, praying he wouldn't pee or poop on me. It was trouble brewing Im telling you. After he fell asleep I put him in his crib, no diaper, and covered his tooshie with a blanket. I dont know about you, but in this day and age I feel awkward letting my son go around where everyone can see everything. I guess you can call me super catious. I want to keep my kids protected. When the doctor came in yesterday, she started worrying about me. Said I looked even more tired than I need when we were here last week. She asked if I was getting enough sleep, 8-12 hours she asked and atleast 4 hours straight. She didnt like hearing that Im lucky to get 4-6 hours a night with 2 hours straight max. She actually thought I was a single parent. I said I wasnt but I am the only one who takes care of his needs. So I guess when I get home I will have to enlist help, atleast until ai catch up on sleep or maybe just a few times a week. Im going to have to write a manual on how to take care of Liam. I have to laugh. Kids dont come with manuals. I guess Liam is going to be the first. Im praying that today his blood cultures and viral panel will be back. Its been hard this past 14 months. Ive watched Liam grow up in a hospital and have missed out on my daughter growing up. We are trying to raise money to buy 2 small notebook computers with webcams so that we can skype as a family. Liam needs his daddy and sister. I need to see my daughter. They need to be able to see us. Same with the rest of the family. My neice set up a fundraiser for us so hopefully one day we can make that happen. http://www.gofundme.com/17hb54 Sent from Yahoo! Mail on Android

I wish I may, I wish I might....

So many bad things seem to keep happening. Im sitting here in Liams hospital room thinking that if only I had my computer with me I could get alot of work done spreading CDH awareness. If only I didnt have to leave it with Justin. If only I had one of those tiny computers I could just put in my backpack. One with a webcam so I could skype with my family. If only the yukon wasnt broke down again. If only Liam would stop getting sick. If only theyd finnaly give Liam a mediport so he didnt have to be tortured for IV access every few days. If only I didnt have to watch my son grow up in a hospital surrounded by misery and pain. If only I could be there to watch my daughter grow up. If only my heart would stop breaking. Theres all these love and loss songs but where are the ones that depicts a family torn apart and a mothers breaking heart? I know Im strong because Im still here at Liams side. I cried while talking to my aunt today. The last time I cried talking to her was when I called her after Liam was born and flown to UCSF. I thought how come she is more like a mother to me than my own mother? How could she care more than my own mother? It made me resent my mother that much more. Theres a black spot where she used to be. When I needed her the most she wasnt there. When I was laying there in that hospital bed scared, hurting, broken hearted and lost she was nowhere. Unreachable. Untouchable. Shes been that way for years now and most of my life. Never there when I needed her. I really really needed her when Liam was born. I needed her today, for whatever reason my heart was broken more at the reminder she couldnt care less. If I had one chance to talk to her, I'd tell her I resent her for not being there and for walking away. That when I think of her I feel contempt. The only example she set was how not to be. When it all seems too much I remember think of her actions and it makes me more determined to be everything she wasnt. So I guess I can thank her for that, and only that. Star light Star bright I wish I may I wish I might Have the wish I wish tonight...... The strength to keep fighting when I feel weak and broken The will to carry on when things look bleak and weary The patients to endue the long lasting battle The faith to believe that there is a light at the end of the tunnel The ability to mend my broken heart Sent from Yahoo! Mail on Android

12 days in 5 days out and back again

Liam was discharged on tuesday after 12 days in the hospital. He had pneumonia, a hiatal hernia and we found out he refluxes over 60 times in a 24 hour period. A normal person refluxes 13-19 times and 45 is required high. Liams surgeon Jones decided the risk of surgery out weighed the benefits so Liams hiatal hernia was left untouched. After 12 days he was discharged and considered free of pneumonia. After only 5 days at home I had to bring Liam back to Childrens hospital ER. Liam isnt tollerating feeds and he has been running a fever since yesterday morning. This morning when I went to change the diaper I had used to vent Liams Gtube into, there was dark brown vommit. His xrays look good, no signs of pneumonia or bowel obstruction. His blood work so far only shows dehydration. Theyre going to do a viral panel on his as well. After 4 pokes, they were able to get an IV into Liams right temple. If it blows we're screwed. The nurses in ER were begging for a mediport just as much as I was and suggested I talk to his surgeon about it. Please keep pur family in your prayers. Lanie is having a hard time. Before I left I had got one of those record-a-story books for her called "Guess how much i miss you". I read the book recording my voice then at the end sang her night night song. My husband has told me she has been clinging to it life a lifesaver since I left. I also bought one for Liam and had sissy tell her own version on the story so that Liam can hear her whenever be wants. Life is hard having a CDHer. I am forced to watch my son grow up in a hospital and I am missing my daughter grow up. This is why Im dedicated to spreading awareness. http://www.facebook.com/ShootingForLiam Sent from Yahoo! Mail on Android

We're here for you...

Life with a CDHer is hard and trying. It's a journey not everyone is cut out to make. Expect the unexpected and the impossible. Liam's life has been full of unexpected's and impossibilities. For instance Liam was discharged after pneumonia and a hiatal hernia landed him in the hospital for 12 days just to return 5 days later with a complete different laundry list of symptoms. Its not the first time this has happened. This will be Liam's 12th hospitalization in his 14 months of life. Some CDHers go home from NICU and hardly ever see a hospital other than checkups and others have frequent visitor "rewards" making the hospital their home away from home. You can't determine how well your CDHer is going to do based on their defect. Liam's CDH was small and they were able to close up the hernia with his own diaphragm tissue requiring no patch. His stay in NICU was also short for a CDHer, only 48 days. I know tbe irony of saying only, because to me it felt like forever. Now since his discharge he has been in and out of the hospital with only 6 weeks straight at home. Your journey with your CDHer will be unique, frustrating, even uplifting. You learn to stay strong and positive even in the midst of darkness and sorrow. Remember that tears dont make you weak, they are an outlet to our over bearing emotions. Shooting For Liam is dedicated to helping families affected by CDH so if you need a place to vent our a shoulder to cry on, we're here for you. If you have questions but want to remain anonymous you can message or email us shootingforliam@yahoo.com

Stay 11 Day 11

Liam is on day 11 of his 11th hospital stay since he was born almost 14 months ago. He was admitted for pneumonia due to aspiration. While here at Children's they found he has a hiatal hernia and are saying they think its related to his CDH. Weve done lots of test. Today hes having a ph probe and this test will determine weather or not he has surgery or gets to go home. Praying for the best.

At it again...

As you know last friday Liam pulled out his GJtube and our Grandpa Beames passed away. Well things have been hectic since then. I spent 3days and 3nights working on a memorial video, we went to the viewing, funeral, and memorial. Liam was fine until thursday night at midnight. He suddenly stopped tollerating feeds and meds. He vommited several times and at 3:30a on friday he asperated. I called and got him back on the rooster to have his GJtube replaced later that day. When Grandma and I got Liam there it was confirmed that Liam asperated and was already suffering the effects. Our GI saw no choice but to continue with the surgery even though he thought chances of Liam tollerating excibation was slim. I understood the risks and agreed fearing there was no other choice. The plan had been to keep Liam overnight for observation. After surgery, our GI came to talk to us in the waiting room. He said everything went great and the excibated him no problem so they decided just to watch him in recouvery for a few hours to watch for fever. The fear was that Liam asperating would turn to pneumonia. If he was fine then we could take him home. The nurse in recouvery didnt understand his orders and released Liam after barely 30min even though I protested. After our hour drive home I take him immediatley to his room and check for a fever. He had spikesld to 102.2 and was in respitory distress. I called our ped and explained the situation. He tokd me to give 4mls of tylanol and 4mls of motron and would call me right back. Half hour later when he called back Liams temp was 101.6, his breathes per minutes 63 and he had started desatting. Our ped told us our GI was furious that his orders werent followed. I was instructed to call 911 and take an ambulance to Kaweah Delta where they would stabalize him and the transfer to childrens. We reached Kaweah at 7:30ish añd then the transfering ambulance picked us up at 11p and we arrived at Children's shortly after midnight. This is where we have been since. Liam has pnuemonia due to asperation. Since weve beeb here he has vommited and asperated twice, making his condition worse. He's on his third IV which is on its last leg. Today they did an upper GI and learned Liams Nissen is above his diaphragm and very thin, not the way it should be. They also learned he now has a sliding Hiatal Hernia. This is why he is vommiting. The opening is bigger than it should be because of the hernia. Feeds have been put on hold as well as any meds he doesnt absolutely need. Other doctors ae being consulted as we speak. The outcome will be the same, liam needs surgery to fix this. The question is when? Do they wait until his lungs are better and keep him on IV fluids only until then? That could be days and no feeds is only going to cause more respitory issues because it takes Liam alot of callories to breathe. But in going ahead with the surgery they risk not being able to excubate him and having to send hin to ICU until his lungs can fly again on their own. Where does that leave me? Honestly I dont care about me. I have the yukon here now so I can make a bed in the back and camp out. Im outdoors kinda girl anyway. Im asking that you say a prayer for little Lamb, that he stay strong and that God guides the doctors hands. Liams doing his best to smile his way through this and to win the nurses hearts. If you would like to send him an ecard or message you can send it to cherubliam@yahoo.com As always Liam loves hearing from those who are praying for him. Sent from Yahoo! Mail on Android