Giving Up Is NOT An Option

I want nothing more than to eat away my aggravation an frustration right now. I'm even ashame to admit that I have given in because the emotions are just too overwhelming. I wish I could say feeding thereapy went well but the fact is it didn't. Liam started drinking te beginning of May, then the next day he was admitted to Childrens because he it sick. And he refused to drink after that and still does. After he eats he sounds junky and its everytime he eats, but worse with some foods than others. They start feeding him at thereapy and a few bites into it he sounds horribly congested. They notice it too so I tell them it happens everytime he eats. We start talking about it and they think he's "silently" refluxing. At first one of the OTs throws out stop feeding him and even she hated the idea. I told her it wasn't an option and that's the reason were having such a hard time getting him to eat and drink because pulmonologys idea to "fix" this issue when Liam was 6 months olds was to stop feeding him. She said to keep a log of when he does this, how often and which foods are the worst. Of course I was able to answer all those questions for her on the spot. She suggested another swollow study since on his last one over a year ago he refused to eat anything so the only results we got were that he has excellent control. So now when I go to the pediatrician Thursday and the pulmonologist Friday I need to talk to both of them about it. OT also thinks his only working diaphragm is weak and Tireing out easily making these issues worse and why he doesn't want to drink. They suggested a few diaphragm strengthening "excersizes" involving party kazoos and bubbles in hopes they will help. They also want me to use the tick-it stuff. They tried it in tomato juice to a honey consistancy and he ate it. They also think that he's avoiding the honey bear and straws because he's not only been intubated many many times but has been suctioned even more. So now its getting the other doctors and specialist to co-operate and order the test. It's so frustrating. The only appointments I could count on getting only good news was Brightstart and Feeding thereapy. And now I can't even count on Feeding thereapy to be stress free. 

Feeding Therapy and doctors appointments

I had every intentions of updating yesterday after we got home but I was too exhausted. Yesterday seemed to go on and on and never end. We left the house at 1pm to go to feeding therapy in a city 20 min away. Feeding therapy went great. They said I had been doing everything I was supposed to be doing and couldn’t have done anything better than I had. They saw how he puts the Gerber puffs on his tongue then spits them out. They also saw how he takes bites of the mummums then spit of the pieces. They said that it was really good that he understand that its expected and socially acceptable for him to do so. They also thought that the fact that I stuck with it even though it took 5 months of persistence and irritation and dissapointment on my part was amazing and the best thing I could have done. I explained how Liam will undo his tube extensions and feeds to suck the formula out of the tubing and they thought that was amazing. They asked if he did that when he was off alone by himself when he thought no one was watching and the answer was 80% yes that he sometimes does it in front of us as well. So they want me to bring his formula for the next visit and theyre going to put It in a honey bear that has a straw and see what he does. They feel that the reason he doesn’t like to eat is that he has a high pallet and from being intubated and exubated so many times. They feel his mouth is sensitized and that we need to work on desensitizing it but that its very hard work. YEA I KNOW! Ive been at this for 18 months. CCS approved 8 visits, 1 visit per month. After an hour long appointment we then drove in the opposite direction for an hour for a appointment with the pediatrician. Then waited an hour and 20 minutes in a waiting room (thankfully a private room) before getting into an exam room. Liam weighs a whooping 21 lbs 8 oz!! Yay Liam! That’s alittle over 1 pound in less than 4 weeks!! We are very happy with that kind of weight gain. Our ped was very happy to hear that Liam didn’t get really sick when he caught RSV and contributed it to the synagis. I have to agree. We spend 10 minutes with out ped before he left us to wait for the nurse to get Liam’s second set of synagis. We waited for her for half an hour. Then finally it was time to drive 45 minutes back home. So you see why I was exhausted. The stress of trying to make it to the ped from feeding therapy, then having Liam is a place so packed with people who were sick. Horrible! And between everything I was dealing with phone calls to ATC and Pulmanology to arrange for a nurse to come to the house and “teach” me how to flush Liam’s mediport and have the mediport supplies delivered to the home every month. The case worker at Childrens says there was no nurse that could come out in our area so she made an appointment with ATC for me to go there every month. I wasn’t happy with that arrangement and our ped agreed to come to the house ad teach me because he’s done it a million and 1 times. When I called ATC to cancel that appointment and explained why, they said I had to call Pulmanology because they were the ones who wrote the mediport orders. When I did she asked if Liam had Childrens health care for supplies. When I said yes, she said they have a nurse that can come out to our home and teach us. That they have a certain protocal that HAS to be followed and they need to ensure that I’m taught their protocals. I was so estatic to hear that there was a nurse that could come and that they would arrange the monthly delivery. Our ped and I have been trying to arrange all this on our own and its been a pain in the rear end. Problem solved.

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Liam has this new thing where through the night he wakes up crying and screaming when he’s peed his diaper. I have never seen a baby so uncomfortable with a diaper that has alittle pee in it! And it’s only at night! Every 2 hours it seems through the night Im changing his diaper. And almost every night Im getting peed on! Im so sick of being peed on lol. I think Liam gets a kick out of it or something.

Besides his new night time routine he has started retching again and sometimes even vomiting. Several times I find myself rubbing his back to soothe him until he’s stopped. So now I get to play around with the timing of his Erythromycin again switching it back to 4 times through the night instead of day…..again. Hoping that solves this issue.

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Miss Lanie is going through that stage where she makes huge messes but doesn’t want to clean them up. So for the last few days she’s been having to spend A LOT of time just cleaning her room. She leaves her shoes, clothes and toys shrewn through the house and Im having to constantly tell her to pick her stuff up. It’s been so hard to keep up on everything with two kids making such huge messes. Hoping this stage will be over soon. Ive also warned her that if she can’t keep her room clean and take care of her toys than she doesn’t need a birthday party. Nor will she need presents.

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1/08 Liam relaxing on mommy watching cartoons

 

1/08 relaxing on mommy watching cartoons

 

1/08 Say cheese Lanie! lol

 

 

 

A Year Ago Today...

A year ago today, we were sitting in NICU getting ready for another try at excubating Liam. Liam has failed being excubated several times prior to this but we kept faith. We knew that there was a chance he still wouldn't fly but we were prepaired. This was the process, the journey, full of ups and downs.

And today....

Liam spends his days surrounded by those who love him. We never get enough of having him here with us. Even when all the breathing treatments and meds and other needs make me feel exhausted, I look at him and his smile fills my heart with satisfaction and content. His big sister wakes up every morning, goes into his room and tells him 'good morning'. She loves trying to teach him new things and "showing him how to play with his toys".

I also have super GREAT news to announce. Its been exactly..................

  9 WEEKS SINCE LIAMS LAST HOSPITAL STAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is the longest stent we've ever had him home!!!! Next weeks it'll be 2 1/2 months!!!!! THANK YOU JESUS!!! And thank you everyone who has been praying for our little lamb. We hope that you will continue to keep him in your prayers.

Liam still has his cold but he's doing really good. Our next little journey will be with physical therapy, feeding therapy and OT. He needs alot of prayers and help in these areas.