Mommy Confessional
Wednesday, November 2, 2011
10/19/2011
It's been a hard struggle this time around. It seems we're doing more fighting with the hospital than Liam is getting care. Their just trying to treat him like a normal kid and pretend he doesn't have CDH. It's B.S.. They just keep shouving food down him, putting him in pain. He spends all night during his continuos feeds fussy and cranky. I spend that time holding him and comforting him. He vommited again tonight. We were only half through his feed when he lost it. It looked like old curddled milk, even the PCT comitted that it looked wrong. That was arpund 4:30pm. His doctors here at Childrens never came in to talk to us. We can't get any doctor to sit down and talk to us to brainstorm or come up with a game plan. They wanted to discharge us today but we refused to let them after he vommited last night. We told them that we weren't taking him home until he was on full feeds and held them down for 24 hours. Suddenly after that converstation they were forcing 70mls down him when he was only taking 60mls before. They're trying to rush us out and not fix the problem that Liam has. I've been arguing with Justin over what I think is best for his health care. We're trying to do everything we can to do whats in the best interest for Liam and sometimes that means comprimissing. I aggreed to let Valley Childrens try to fix Liam. Now were trying to figure out what our next move is. We've talked to the charge nurse, on call doctor and a social worker tonight about our concerns and it seems were wasting our breathe. I pray tomarrow will yeild more answers and a solution. Liam is in God's hands and I pray that God leads us to make the decisions that are right for him. To think this all started because Liam cought a cold while at UCSF. I think thats why it's been a hard decision to make on wether or not to take him back there. Please keep Liam in your prayers.
10/18/2011
9:00pm We were on our way out the door but Liam threw up his 7pm feed. He was doing so well. His feedings were up to 60mls and we were starting the night time continuos feeds. We were all so excited about going home. Now we have to wait and find out if we still get too. His cough is alot better and he seems to be doing better. All except this one incident.Still praying because it's in God's hands.
10/17/2011
Liam had his upper GI today. It was pretty neat to watch. It was just like the foral test only they make you drink this contrast stuff that allows them to see it travel through the body. Liam's stomach is flipped but it's "normal" for CDH kids. He does not have malrotated bowels but dows have reflux or what they kept called gurd. You could actually watch as the contract splashed up into the esophagus. I wish I would have recorded it. Valley Childrens will keep him for a few more days to get him eating normally again then release him. We think we will be out of here on wensday. They already uped his dose of Reglan to maximun dosage and theres no much else they can do for him. We just have pray that he will be ok. Last night was very long. We went and picked up Buggie around 8pm, didn't het back to the hospital until midnight then everytime Liam would finnaly fall asleep a nurse or pct would come in and mess with him and walk out. I didn't get to fall asleep until around 5:45am when Justin woke up and took over. I slept until 9am then took a 2 hour nap this afternoon. I hope its not as bad tonight. It'll probably be worse since that ditzy nurse is back tonight.
10/16/2011
It's been a long day, last night was a long night. I'm tired and just want to go home. I miss my daughter. It's not fair for her that whenever we have to take Liam to the hospital she looses both her parents. I'm sick of hospitals. The four of us should be able to always stay together. I know this won't be Liam's last stay in a hospital but I pray it will be for atleast a year. Liam is hanging in there. He still only being fed 1 oz every 2 hours but is holding it down. I'm assuming taking him off the iron drops helped but its not the cure. He has an upper GI tomarrow. I'm hoping for the best and best would be an answer and then being able to go home. The worst would be that they have no idea whats going on with him. This hospital is so boring. It's nothing like UCSF where there is always something to do. Here you're in the middle of nowhere with nothing to occupy your mind.
10/15/2011
11:30am The doctor came in this morning and we talked to him about Liam's meds and what happened last night with the nurse. He agreed that it was not at the nurses discretion and that he will be talking to her supervisor because that cannot go without consequence. We also talked to him about the fact that they were doubling the dose of Reglan. He said the GI doctor suggested doing so in hopes that it would help move things along. I explaned how I had been under the impression that Liams Reglan was already maxed out. He said it wasn't that this dose of .08mls is the max. We explained how we thought we DCed everything and were confussed at to why all of a sudden that wasn't the case. No one has been talking to us, explaining the plan or anything. We're sitting here in the dark. That was the problem we are having with them and why we feel they're not doing everything they could be. So now we have a sort of plan. Were giving Liam his meds and going to start to slowly feed him. Last night he only got a dose of Ranitidine and it instantly hurt his stomach. This morning he got Ranitidine, Iron and Vit D and it took about 5 min for it to start hurting. Thats a good sign that things are getting better but also that the problem is not his stomach but intestines.We're praying everything goes fine on monday with his upper GI and maybe get some answers. These nurses and doctors act like we have no clue whats going on and that we're just two dumb parents. They forget that we've been doing this since his birth and we were trained very well by UCSF on our sons condition. Childrens Hospital does not like to actually fill you in on the plan with your child. They're used to the kind of parents that just hand over their kids, say fix them and don't care how or whatt the problem was. so they're taken back by our need to know approach.
1:52pm The pediatric doctor came in and talked to us about his plan for Liam. It's the same as everyone elses but he actually was willing to talk to us about everything. We are starting feeds with 1oz of pedialyte every 2 hours for today and if we feel comfortable that he's doing good with that we can advance him to 1oz formula every 2 hours. He also DCed the Iron because he said Iron drops are very heavy and hard on the gut and he thinks it will help Liam not to on them. I have been trying to get him off the Iron for a month now saying I thought it was too much on him . The doctor did check Liams hemogloban before making the decision so it was an educated decision. I am very happy with this doctor and how he is handleing the situation.
2:15pm Just gave Liam his first feeding of 1oz pedialyte. He didn't cry at all. I never thought that I would be so happy over the smallest things before Liam. Now we just wait to see if he can hold it down. Sending up a prayer that he does.
7:00pm Liam has had 3 feedings now of 1oz pedialyte. He's held now every bit of it and hasn't been too fussy. We're thinking of trying 1oz of formula next to see how that goes. This is all so nerve racking and stressful. Memories of what I've seen Liam go through threaten to flood my mind and overwhealm me. Everytime I close my eyes I cant help but see images of Liam in ICN flash through my mind.It's the same concept as when a war vetran comes home, post tramatic stress syndrom. I know some people think it couldn't be that bad but you don't know how bad it is unless you go through it yourself. The sounds of monitors beeping might as well be granades going off. My heart starts beating really fast and I start sweating and the images start spilling out of the dark closet I tried to lock them away in. I guess the best way to deal with this issue would be to face it head on. Talk about it and hopefully learn to accept. I hate hospitals. I hate the smell, the lights, the beeping monitors. I hate that I feel trapped when I'm at a hospital. Thats probably all I can handle for now. They say you have to take it in baby steps. I know other parents that are going through this very thing after having a child in the hospital and someone needs to make a group for parents with PTSD after having a hospitalized child.
1:52pm The pediatric doctor came in and talked to us about his plan for Liam. It's the same as everyone elses but he actually was willing to talk to us about everything. We are starting feeds with 1oz of pedialyte every 2 hours for today and if we feel comfortable that he's doing good with that we can advance him to 1oz formula every 2 hours. He also DCed the Iron because he said Iron drops are very heavy and hard on the gut and he thinks it will help Liam not to on them. I have been trying to get him off the Iron for a month now saying I thought it was too much on him . The doctor did check Liams hemogloban before making the decision so it was an educated decision. I am very happy with this doctor and how he is handleing the situation.
2:15pm Just gave Liam his first feeding of 1oz pedialyte. He didn't cry at all. I never thought that I would be so happy over the smallest things before Liam. Now we just wait to see if he can hold it down. Sending up a prayer that he does.
7:00pm Liam has had 3 feedings now of 1oz pedialyte. He's held now every bit of it and hasn't been too fussy. We're thinking of trying 1oz of formula next to see how that goes. This is all so nerve racking and stressful. Memories of what I've seen Liam go through threaten to flood my mind and overwhealm me. Everytime I close my eyes I cant help but see images of Liam in ICN flash through my mind.It's the same concept as when a war vetran comes home, post tramatic stress syndrom. I know some people think it couldn't be that bad but you don't know how bad it is unless you go through it yourself. The sounds of monitors beeping might as well be granades going off. My heart starts beating really fast and I start sweating and the images start spilling out of the dark closet I tried to lock them away in. I guess the best way to deal with this issue would be to face it head on. Talk about it and hopefully learn to accept. I hate hospitals. I hate the smell, the lights, the beeping monitors. I hate that I feel trapped when I'm at a hospital. Thats probably all I can handle for now. They say you have to take it in baby steps. I know other parents that are going through this very thing after having a child in the hospital and someone needs to make a group for parents with PTSD after having a hospitalized child.
10/14/2011
All test results and cultures are in NO viruses flu rsv or phemonia. If their is a blockage they dont see it. Getting another xray today to see if he reherniated. Please pray. Liam hasnt eaten in days and is on IV fluid just for dehydration, no calleries. Liam is loosing weight cant afford to be doing so. He sleeps most of the day and night because he has no energy. We dont know whats going to happen.
12:30 pm The doctors here at childrens has decided to do an Upper GI. Hopefully that will yeild some answers as to what is going on with Liam. They're also talking of starting TPN because their not wanting him to loose too much weight. Liam is still cranky and in pain. The doctors here decided to treat this like it has nothing to do with CDH until the see otherwise. Im not too sure how I feel about that. I understand that this could have nothing to do with CDH but I also know other CDH babies that are having similar symptons. Unfortunately there have yet to be answers for those babies. Im tired and Im crabby. I havent gotten much sleep since sunday night. I'm not giving up and I refuse to let anyone else give up on Liam. There are more test they want to run if this test shows nothing. I just pray to God that we can get passed this hurddle. I know that there will be more hurddles to come but we can only jump over one at a time.
2:10pm It's been 5 days since Liam has been able to hold food down. Childrens only has him on IV fluid (saline) for dehydration. They don't want to put him on lipids or TPN until after the do the upper GI. If he doesn't get the upper GI until monday that will be 8 days with nothing. He's already lost almost a pound. He weighted 4.48kg this morning, 8lbs 13oz. When we brought him in he was 9lbs 5oz I believe. A different doctor came in to talk to us that will be following Liam through the weekend and next week. He said he won't let Liam's weight loss get critical. What he thinks is critical and what I think is critical is on different ends of the spectrum.
7:00pm Been doing research all afternoon and talking to other parents with cherubs. It sounds like there are a few possibilities. He could have a bowel obstruction, reherniated or malrotated bowels. Yes childrens is saying its not an obstruction but I don't believe them because they keep saying "everything looks good but his anatomy is so jumbled up that we really don't know". I have posted his xray from today on a few sites asking anyone to take a look and let me know if it looks like their kids. I've also emailed the xray to several doctors and surgeons and am waiting their response. I'm uncomfortable at this hospital and don't really trust their diagnosis. I think it all boils down to the fact that they don't answer question affectively, they say "I don't know" alot and theyre going to let my son go 8 days without any callories or nutrition. Im having to make a huge decision on weather or not to have him transfered.
10:25pm Severely irritated. The night nurse came in to give Liam Ranitidine. I told her that I was told we DCed all meds as of last night. She told me and I quote "Oh no it's at the nurse's discretion". I just stared at her. You don't put a nurse in charge of deciding weather or not a baby needs meds. The doctors needs to make that decision then its up to the parents to agree and disagree.Then she proceded to tell me that starting tomarrow they will be starting the Reglan and doubling the dose to .8ml's 3 times a day. That is sooooo not happening in my book. It was my understanding when we were in UCSF that Liam already had the max dose for his size and thats .4ml's. I refuse to let them overdose myy child on meds because their too stupid to ask UCSF for help. I let her give Liam a dose of Ranitidine this evening just to see if his tummy was still hurting. That will be the last dose until we figure out what's wrong with him.Justin and I don't see eye to eye on everything but we deffinately agree about his meds, Why would you put meds that prevent reflux into a babies stomach that one isnt eating anything and two water even hurts him. We have a list of questions we want answered as soon as the doctor comes to see us tomarrow.
12:30 pm The doctors here at childrens has decided to do an Upper GI. Hopefully that will yeild some answers as to what is going on with Liam. They're also talking of starting TPN because their not wanting him to loose too much weight. Liam is still cranky and in pain. The doctors here decided to treat this like it has nothing to do with CDH until the see otherwise. Im not too sure how I feel about that. I understand that this could have nothing to do with CDH but I also know other CDH babies that are having similar symptons. Unfortunately there have yet to be answers for those babies. Im tired and Im crabby. I havent gotten much sleep since sunday night. I'm not giving up and I refuse to let anyone else give up on Liam. There are more test they want to run if this test shows nothing. I just pray to God that we can get passed this hurddle. I know that there will be more hurddles to come but we can only jump over one at a time.
2:10pm It's been 5 days since Liam has been able to hold food down. Childrens only has him on IV fluid (saline) for dehydration. They don't want to put him on lipids or TPN until after the do the upper GI. If he doesn't get the upper GI until monday that will be 8 days with nothing. He's already lost almost a pound. He weighted 4.48kg this morning, 8lbs 13oz. When we brought him in he was 9lbs 5oz I believe. A different doctor came in to talk to us that will be following Liam through the weekend and next week. He said he won't let Liam's weight loss get critical. What he thinks is critical and what I think is critical is on different ends of the spectrum.
7:00pm Been doing research all afternoon and talking to other parents with cherubs. It sounds like there are a few possibilities. He could have a bowel obstruction, reherniated or malrotated bowels. Yes childrens is saying its not an obstruction but I don't believe them because they keep saying "everything looks good but his anatomy is so jumbled up that we really don't know". I have posted his xray from today on a few sites asking anyone to take a look and let me know if it looks like their kids. I've also emailed the xray to several doctors and surgeons and am waiting their response. I'm uncomfortable at this hospital and don't really trust their diagnosis. I think it all boils down to the fact that they don't answer question affectively, they say "I don't know" alot and theyre going to let my son go 8 days without any callories or nutrition. Im having to make a huge decision on weather or not to have him transfered.
10:25pm Severely irritated. The night nurse came in to give Liam Ranitidine. I told her that I was told we DCed all meds as of last night. She told me and I quote "Oh no it's at the nurse's discretion". I just stared at her. You don't put a nurse in charge of deciding weather or not a baby needs meds. The doctors needs to make that decision then its up to the parents to agree and disagree.Then she proceded to tell me that starting tomarrow they will be starting the Reglan and doubling the dose to .8ml's 3 times a day. That is sooooo not happening in my book. It was my understanding when we were in UCSF that Liam already had the max dose for his size and thats .4ml's. I refuse to let them overdose myy child on meds because their too stupid to ask UCSF for help. I let her give Liam a dose of Ranitidine this evening just to see if his tummy was still hurting. That will be the last dose until we figure out what's wrong with him.Justin and I don't see eye to eye on everything but we deffinately agree about his meds, Why would you put meds that prevent reflux into a babies stomach that one isnt eating anything and two water even hurts him. We have a list of questions we want answered as soon as the doctor comes to see us tomarrow.
Subscribe to:
Posts (Atom)